Recently I shared The Five Stages of Loss of Gluten in a friend’s gluten-free living series that she hosted for Celiac Awareness Month. The following post on Grieving Gluten is a slight revision—but very important revision—of my original post based on some valuable input from another friend, Heather (formerly of Gluten-Free Cat).
If you’re gluten free, did you experience The Five Stages of Loss of Gluten after your diagnosis? Many people admit they have gone through these stages. As a celiac/gluten intolerance support group leader, I see my members go through these stages. Readers email me and tell me they have gone through (or are going through) them and yes, I experienced them to some degree myself.
Dr. Elisabeth Kübler-Ross, a psychiatrist, shared her Kübler-Ross Model, commonly known as The Five Stages Of Grief, in her book On Death and Dying. She developed this model after working with more than 500 dying patients. Kübler-Ross concluded that folks coping with grief and loss go through five distinct stages.
It’s important to note that she stated that not every individual who experiences such loss will go through all five stages or even go through them in the same order if they do. Individuals are unique and so are their responses to loss.
Kübler-Ross concluded that some individuals may simply get stuck in a stage. She also said that individuals could go back and forth between stages, experiencing a “roller coaster” effect, before they completely work through all the stages and “move on.”
Over time, the stages have been applied to other areas of life besides grief due to loss of a loved one … loss of a limb, loss of a job, or any other major life disappointment or trauma. In my experience, these stages really apply to many life challenges. Let’s talk about how they apply to a diagnosis of celiac/gluten intolerance/non-celiac gluten sensitivity and the loss of gluten, an ingredient that is, in fact, a huge part of the Standard American Diet.
The Five Stages of Grieving Gluten
“No, this is not the right diagnosis. Who ever heard of gluten anyway? Isn’t that what those stars give up when they are trying to lose 20 pounds? I have to give up wheat, rye, barley, and oats? But I eat McCann’s oats … they’re so healthy for you, and now they say they’re “contaminated”! Contaminated? Who uses that word? Bring out the white HAZMAT suits. Geez. Gluten simply cannot be the cause of my issues. This diagnosis is wrong.”
“I’ve had no medical problems at all other than my skin issues or bathroom problems, but everyone in my family has those. I can control them with my prescriptions. I think I’ll go to another doctor.”
“I’ve had anemia (or insert other symptoms/conditions, like osteoporosis, depression, and more) for years; it runs in my family.”
“How can taking gluten out of my diet fix these issues? It just doesn’t make sense. I’ve never had a food allergy or food intolerance in my entire life.”
“I didn’t react to foods like pizza and baked goodies when I was pregnant. If I am gluten intolerant, how is that possible? I don’t think this doctor is right. The test results must be wrong.”
“Pretty much everyone else I know can eat whatever they want. Why should I have to give up pizza, beer, sandwiches, and cookies?”
“This is a screwed up diagnosis.”
“Patti says it could be worse. She says that I could have cancer instead. At least my condition is treatable by diet, she says. Yeah, right. That’s easy for her to say. She can still eat whatever she wants.”
“Eating gluten free is impossible unless one just stays home and eats crappy packaged gluten-free food all the time!”
“I’ve been living with a diagnosis of IBS for 20 years and all along it’s been gluten! Not once was gluten suggested as the cause of my problems. I was even referred to a psychiatrist. That doctor really needs to know she was wrong!”
“I’ve been eating gluten this long. I’ll just eat whatever I want over the weekend and start on Monday.”
“My granddaughter’s wedding is next month. It would be wrong for me not to enjoy that cake with the rest of the family. A piece of cake can’t kill me. I’ll go back to eating gluten free after Jill’s wedding.”
“I’ll just have a tiny bite of Mary’s order of Tiramisu this one time when we all go out to dinner at Angelo’s, and then I’ll be 100% gluten free from that point on.”
“There’s nothing I can eat if I go out. I’ll just stay home. This life SUCKS.”
“This is worse than anything I could have imagined. My life will never be the same again.”
“I have now become a social outcast. None of my friends, or even my family, want to deal with my food issues.”
Kubler-Ross says this is the time that the person understands that the situation is real; it’s not going to change. She states that the individual gets very quiet and disconnects from others. The tendency is for their loved ones to try to cheer them up, but individuals in this stage should be mostly left alone. If they come to you, you can be supportive and hopeful, but otherwise, let them grieve.
“Okay, this is going to be okay. I can still eat steak and lobster when we go out for my birthday every year.”
“Barbara made some flourless peanut butter cookies for me that tasted great. She said they were so easy. I can make those for myself any time.”
“Wine is gluten free!”
“I can still go on the beach trip with the girls. I’ll bring some of my own food and help them choose meals that are naturally gluten free. I can even be the grill chef to make sure my food is kept gluten free.”
“I’m really starting to feel much better. I actually think that my doctor got it right this time!”
This is the stage where Kubler-Ross says the person comes to terms with the loss. They can “move on.”
In the first iteration of the original of this post, I shared a mix of feelings under “Acceptance” … “okay, I can deal” and “this is going to be okay” type sentiments to statements showing some excitement about being gluten free. However, after I submitted my post, the ending didn’t feel quite right. Heather came to the rescue with the following comment that included her experience and her personal “take” on the stages:
1. Denial: I have no symptoms! Why would I spend $450 to get tested?
2. Anger: Why does this have to be genetic?
3. Bargaining: NO bargaining at all. I completely intended to have a cookie after 30 days of gf living just to prove the diagnosis as wrong. But I felt SOOOOO much better with gf eating and had a few accidental glutenings that put me out. I realized I could never intentionally hurt my body and eat gluten again.
4. Depression: Oh, the things I will never eat again. Sniff. (Um, no. SOB!)
5. Acceptance: Can we rename this as EMBRACEMENT? My life is so much richer after my diagnosis!!!
My reply to Heather was that I didn’t feel we needed to replace Acceptance with Embracement. Instead, I felt Embracement should actually be the final stage of grieving gluten, a sixth stage for those of us who go gluten free.
The Final Stage of Grieving Gluten
“This list of things I can eat is pretty amazing actually.”
“This is the healthiest I’ve eaten in my life. What a gift it is to go gluten free.”
“I love knowing what is in the food I’m eating.”
“I’m going to share my gluten-free way of living with everyone I know because it’s just fantastic on so many levels!”
“Naturally gluten-free, flourless cookies and cakes are awesome. Plus, crustless pies are amazingly good and so easy to make!”
“I’ve seen so many health issues go away since I’ve gone gluten free, that I’ve forgotten some that I used to experience. It’s incredible. I am so happy to be gluten free now!”
Heather and I at the Gluten-Free and Allergen-Free Expo in May (photo courtesy of Heather)
As far as my own experience with finding out about gluten, I only experienced Denial in the sense that I didn’t get better immediately by going gluten free. It was only when I took other foods out of my diet that I began to improve. Still, it took time. So my Denial was more in the sense of questioning if the total answer had been found for me.
My Anger was real I suppose, but it felt more like being overwhelmed and it didn’t last long, although I did feel anger towards all the doctors who had treated me, taken out organs, etc. and had not correctly identified the source of my problem. Honestly, anger at lack of diagnosis for so many still spurs me on today. I really, really wanted to feel better and knowing there was an answer to my health problems was actually a huge relief for me.
I think I largely skipped Bargaining because I had a transition period. My doctor advised me to eat anything I wanted with gluten in it until I took the gluten sensitivity test and then NO gluten. Period. (Side note: This test is controversial. I later was determined to have celiac genes. I could not be tested for celiac using the “gold standard testing”—celiac blood panel followed by an endoscopy of the small intestine with multiple biopsies taken) as I’d already been eating gluten free. One must be eating gluten to get accurate results on the gold standard testing.)
I squeezed a lot of gluten into what turned out to be 5 days. Then I never knowingly ate gluten again. It’s not that I’m a saint, but again, after a lifetime of medical issues, I wanted to get well as soon as possible. Ironically, another doctor told me that my gluten detoxification was probably far worse because of all the gluten I ate during those 5 days, but I do think that period allowed me to skip the Bargaining phase and for that I am grateful.
I did experience some Depression. I had to come to terms that this was going to be my life and that my favorite gluten-full recipes would not be made again. (Or so I thought; read on.) I was a big baker and my attempts at early gluten-free baking were not successful. I also liked to entertain so I was definitely down until I figured out my gfe approach.
Once I focused on real food and meals that were naturally gluten free, I was definitely in the Acceptance stage. Still, there was something missing. Yes, I was feeling significantly better and I was beyond grateful for that, but I didn’t have that spark for life that I used to have.
Finally, I started baking again. Successfully! I began making flourless and crustless recipes often. I started using a very simple (only two ingredients!) gluten-free flour mix when flour was needed in a recipe. And I found it far superior to the gluten-free flour mixes that I had purchased.
I began converting old family recipes to gluten free and again, I was having great success. Not only was I thrilled, but my family and friends were, too. I was now using only a handful of gluten-free specialty items and my gfe approach was born.
Suddenly living gluten free was not only “doable,” but it was very enjoyable. In fact, it was exciting!
I focused on real, whole foods more than ever. I learned to like new foods. I gained a new love of whole foods that I’d enjoyed previously and learned to prepare them in new ways.
When I went out to eat, I focused on the naturally gluten-free foods I could eat—foods like healthy and delicious salads, perfectly grilled steaks, tasty steamed seafood, a simple baked potato, and safely steamed vegetables. That’s when I really experienced Embracement.
Many of us know that the harder we fight something, the more difficult the situation can become. I, and many others who have embraced gluten-free living, often get very frustrated by the bombardment from the media on how hard the gluten-free diet is.
It’s as if the world is stuck on Stages 2 and 4—Anger and Depression. And to make matters worse, “the world” (the equivalent to the ubiquitous “they,” if you will) is not even eating gluten free, so what do they know? And why do they care so much? But that’s another post.
If you say something long enough, people believe it. And we all know that anything negative seems to grab a lot more attention and get shared much more than “good news” stories. Therefore, many gluten-free folks join in on the chorus of how hard living gluten free is, usually before they’ve given gluten-free living a fair shake so to speak. They don’t move on to focusing on all the fabulous foods one can eat if gluten free. That is unfortunate because it keeps them from eventually reaching the “new,” final stage of Embracement.
The ongoing negative focus by the media was the main driver behind Diane Eblin’s (The WHOLE Gang) 30 Days to Easy Gluten-Free Living—an event she hosted and participated in with 30 other gluten-free bloggers. You can see the complete listing of posts here; you’ll find all of them helpful in working through the stages of loss of gluten.
If you are stuck in one of the earlier phases, read Diane’s series and reach out to the gluten-free community via blogs, Facebook, Twitter, gluten-free forums, your local support groups, and other local and national gluten-free events. The support is there and it’s incredible. Seek out whatever help you need.
Maybe we can start moving past some of these stages here today. Where are you now in the stages of loss of gluten? Will you share your own stages like Heather did above?
Is there any single thing that helped you move from one stage to another? Are you stuck in one stage? Do you know why you’re “stuck”? Do you even feel these stages are valid when applied to living gluten free?
Please share all in the comments. Take that first step so that ultimately you can reach the final stage of Embracement and flourish!
For more discussions on feelings of loss and ideas on moving forward, check out the following posts:
~ They Just Don’t Understand: Dealing with Gluten-Full Friends and Family … Part I: Categorization) and Part II: Strategies for Dealing with Gluten-Full Friends and Family
~ Mary’s post on Feeling of Loss (Gluten-Free Spinner)
~ The Emotional Side of Gluten Free (Gluten-Free Respect
Originally published June 14, 2011; updated January 25, 2023.
fat lazy celiac says
My bargaining stage was a bit different. I had no problem eating and continuing to eat gluten free, but I wanted to be sure it wasn’t psychosomatic. I actually asked my boyfriend to sneak me some gluten to see if I had a reaction! (Thank goodness he was much more level-headed about it – he refused.)
Hi fat lazy celiac–Thanks so much for sharing your experience. We do second guess ourselves on what’s in our heads, don’t we? I know when I start feeling odd after eating out, I usually wonder if I’ve psyched myself out to be ill … at least initially, until my tell tale symptoms manifest. 🙁 Major kudos to your boyfriend for keeping you gluten free and not giving you the “test”! A lot of folks do test themselves though because of that little bit of doubt.
I am definitively between depression and Acceptance. I know that blogging about my experience and the foods I have found that taste good and replace gluten has helped me move more into the Acceptance stage.
Hi Crystal–Welcome to gfe! 🙂 Thank you for sharing your stages. Your blog, Adventures of Gluten Free, is new to me, so I’ll definitely check it out. You make a really great point that sharing your experiences and successes with new gluten-free foods allowing you to move into the Acceptance stage. When we consider all the hardships we face in life, it’s usually becoming knowledgeable and empowering ourselves that makes the biggest difference in being able to handle them. Hope with time that will lead to the Embracement stage for you! Thanks again for commenting, dear.
Sooner Girl says
I really skipped over the first 3 stages. I’ve had a few seconds of frustration that my doctor wouldn’t listen to me years ago, but that’s it. I pretty much jumped right into acceptance, because I could not believe how good I felt when I went GF last year. But I have been dealing with depression over the past couple weeks. I miss the taste of certain things.
I’m glad I saw this article. Makes me not feel so stupid about crying over no more quarter pounders from McDonald’s.
Hi Sooner Girl–It looks like you are new here–welcome! 🙂 What you share is very common I think. That relief to feel so good and have answers and then the sadness that can come after you realize that this is a change for life and certain foods and dishes are off the table … literally. It’s perfectly normal so I’m glad you saw my post, too. It takes some time to realize that you’ll be living better than you ever did before. The quarter pounders at McDonald’s might become In and Out burgers or burgers from Five Guys in a lettuce wrap. So much of it is our thinking about it all. I don’t feel deprived even when others are eating what I used to enjoy, but it took time. But again transitioning to even better, healthier meals to eat can help with that. We can’t go from 0 to 60 mph in 8 seconds though. Try to allow yourself to grieve and then move on. As others have shared, focusing on getting the word out to others can help with that as it takes the focus off one’s self.
I did literally cry the first time I went to buy ice cream and had to have a cup and not a cone. It was absurd, but needed to be done. Food is so deeply imbued with emotion and meaning, and until you have some event that challenges your norms, it’s difficult to understand how deeply it matters and why.
Hi Stephanie–Sorry I missed replying to you earlier … I completely understand what you mean. Food is about more than, well, food. We do learn to get past these changes and celebrate the differences and learn new ways to enjoy old foods and new foods and recipes to enjoy. In the end, it’s good and we don’t feel deprived, but it is a process.
Thanks so much for taking the time to comment! 🙂
Sooner Girl, thanks for posting your comment about McDonald’s! I had to lol at myself because I cried a few tears about not getting to eat their fillet of fish sandwich again. Thanks for letting me know I’m not alone. 🙂
Hi Barbara–I’m not sure if Sooner Girl subscribed to comments, so she might not see yours, but I did want to welcome you to gfe and thank you for taking the time to comment. For so many of us, we grieve the simple pleasures and simple conveniences—so many things we took for granted “before”—initially. Later we might think we were silly, but we are never wrong and never alone in our initial feeling of loss when going gluten free.
Thanks again for sharing!
I can totally relate to these stages. Thankfully, I am into the Embracement stage 🙂
Hi Shari–Great to see you! And woohoo on being in the Embracement stage! It’s not an instant transition as we all know. Thanks for sharing your thoughts!
I’m still stuck in stages 2 & 4 and I was diagnosed in November 2009. I know that I’m still having a hard time with it because I still don’t feel any different from when I first went gluten free. I don’t have any “typical” symptoms if I do accidentally ingest gluten. So I never had a period of feeling really good. I was so sure that the fatigue, acid reflux, and anxiety that have affected me for many years would go away once I went gluten free and it still hasn’t happened. So I think that is why I am stuck. I also don’t have much of a support system with my family and friends and my husband sees the whole thing as a big annoyance. I’m sure those things add in to why I’m still feeling sorry for myself. But I have accepted that this is the way I have to live the rest of my life…I’m just still not happy about it.
Sharon, have you had other things checked, like thyroid? Some of your symptoms could be explained by that. I didn’t have typical symptoms either, so when people say “at least now you probably feel so much better” — well, no, I don’t! I do have a reaction when I accidentally ingest gluten now, though. (It’s only happened once, thank goodness.)
I think my stage is “sulky acceptance.” 😉
Hi @mpv61–It looks like you’re new to gfe–welcome! 🙂 Thanks so much for sharing your story with Sharon (and all of us). Great suggestions and I appreciate you stating your stage. Hope you can move on to the next stage … either embracement or others shared here.
Hi Sharon–It’s always great to see you, dear. Thanks for being so honest about what you have been going through. That’s a long time to go gluten free and not experience any improvement in symptoms. Respectfully, dear, you may need further evaluation as you may have more going on than just celiac disease. Many of the symptoms and conditions that you are experiencing do typically resolve after one goes gluten free. Yes, they can take time to resolve, but not usually that long. Other things to consider are ongoing vitamin and mineral deficiencies (your symptoms are a red flag for those), having additional intolerances (e.g., dairy–a very common one) that are not allowing your body to heal properly, the possibility that you are still getting gluten in some form (not all gluten-free products are truly gluten free and some of us are more sensitive than others; still getting gluten unknowingly is the most common cause of not healing per Dr. Cynthia Rudert), etc.
Family issues can be a challenge for most of us. It’s a topic I plan to discuss in a future post. Some families jump right on board and others are resistant and frankly, not helpful at all. Part can be attributed to ignorance on their part (consider how much you didn’t know and how tolerant were you of others’ food issues before going gluten free; I know I was pretty ignorant myself and not nearly as caring as I should have been). A bigger part is often their own unwillingness to change their habits and foods. And unfortunately whatever the reason behind their actions, the lack of support is very hurtful. I believe that we can combat some of these situations with our own attitudes and approaches though. One of the pluses of the gfe approach is the focus on real food that tastes perfectly normal (and delicious I might add) to everyone, including gluten-full family members. I’m not sure about what gluten-free foods you’ve been eating, but if you use a lot of the gluten-free processed foods, many of them I don’t even want to eat. So I don’t expect others to enjoy them either. And that’s not mentioning how harmful most of them are to our health with their heavily refined and often high glycemic ingredients. So you’re stuck as you said. It’s important to take some of the steps I mentioned to see if you can feel better and move forward. If you’re not feeling any better, it’s hard to do that. Feel free to email me and we can chat more and do look for a follow-up post in the near future, too.
This, too, shall pass … I firmly believe it … big hugs,
Sorry to hear GF hasn’t taken away your complete symptoms. My case was similar and so I did a few extra things, like removing ALL grains from my diet. Apparently my body was responding to all grains like gluten and I really damaged my gut over time. I added probiotics to get my gut bacteria in balance and digestive enzymes to help break my food down and get absorbed. There is hope, it was a 2 1/2 year journey for me and I feel GREAT! For recipe ideas I have turn to Paleo, eating primal like our ancestors. I should also mention I found a naturopathic doctor who does bio-feedback to find my sensitivities.
Much luck to you!
Hi Lori–It looks like you are new here–welcome! 🙂 Thanks so much for sharing your story with Sharon and the rest of us. All the points you’ve made are really good ones. I, too, don’t do well with grains and have been removing them more and more. That can seem more overwhelming to folks than going gluten free, but it’s not that hard after you make a few changes and the results are huge. I agree about probiotics and enzymes as well. Our damaged guts need some real help. Doctors like Dr. Thomas O’Bryan are out there speaking daily on the need to “heal the gut” … simply going gluten free is not enough for many. I have been reading more and more about paleo and primal (just finished reading The Primal Blueprint) and it all makes perfect sense to me. Again, thanks so much for stopping by, telling your story, and encouraging us all!
Same thing for me except I am doing the GAPS diet….and I avoid all processed sugars…corn syrup is worst.
Hoping it won’t take me 2 1/2 years…
How did u find out how much damage was done to your gut…as I am totally depleted in iron and lots of other levels below normal. This blog has given me so much comfort and feeling of support during a time when I need it the most. THANK YOU ALL!…I read every one. 🙂
Gina - The Gluten-free Gourmand says
Embracement: Ha! My diet includes steak and ice cream. Take that!
It was a difficult transition to give up eating everything, but I never felt depressed about it. I did feel depressed when I would somehow start getting symptoms again and not know why. Once I figured out that I wan’t being careful enough, then got myself feeling better for long stretches of time, I was able to really embrace the lifestyle. Thanks for a great reminder that there is a journey to go through and a happy ending!
Heather @Gluten-Free Cat says
Oh my gosh, I’m laughing so hard. I had to read this aloud to the hubby! Take that! 🙂
Heather–Chuckling here … wonder how far we could take Gina’s approach. Maybe a massive listing of foods that we can eat because they are gluten free? That could be a fun “glass half full” post I think! 🙂
Heather @Gluten-Free Cat says
Hee hee! And I have to say, I’ve enjoyed EVERY single comment on this post. You have struck a chord with the gluten-free community. It has been a blessing to read the stories behind the diagnoses. These are REAL people dealing with REAL issues. And your blog is such a safe place to share and be heard. You have such a mission field! Bless you! <3
Hey Heather–Thanks so much! It’s truly wonderful having you as a gfe reader and collaborator! 🙂 Yes, it’s all so real and not an instant enlightenment thing (another great word to go with embracement!). It takes time to go through these stages and just like grief over the loss of anyone or anything, it affects us all differently. Now I must get back to replying to all of these heartfelt comments. I took a few hours out to vist my dad. 🙂
Hi Gina–Yippeee for you! With a blog title like Gluten-Free Gourmand, you’d have to be in the Embracement stage, right? 😉 Steak and ice cream–love it! Yep, that’s the way to look at it. When we look at all we can eat, it definitely makes an ENORMOUS difference and can allow us to do that happy dance finally.
I so appreciate you sharing your experience on still getting some gluten in your early gf days. It’s a problem for many of us as we learn what’s safe and what’s not, even when considering those food products with the “gluten-free” labels.
Thanks again for sharing your story, Gina. Happy endings are indeed the best! Mr. GFE always says “you have to walk through the valleys to appreciate the view from the mountain top” and that sentiment certainly seems appropriate to our gluten-free lives. 😉
I love this diet (although I hate referring to GF as a diet because that’s when I always get the questions about “are you doing it for weight loss?”, “because of a celebrity?”, etc.).
I started on this steak and ice cream way of life at the beginning too. We had a freezer in the garage that was almost purely meat and every kind of ice cream I wanted … and I even ate it for breakfast for at least a few months 🙂 However, I am very happy to say that I moved past those two foods alone with a HUGE thanks to Shirley’s blog. This blog helped me get creative in the kitchen and get into making so many of my own tasty treats that I forget about the rest. I also love sharing these discoveries I make in the kitchen with others that are new to GF … because I remember how hard it was at the beginning.
LOVE this article in general and can’t wait to hear more about the family articles because that’s definitely something that puts me back into the depression stage all over again every once in a while when extended family members (husbands entire family) just don’t get it.
I probably shouldn’t have posted all of this as a reply …. but the ice cream brought me here and I had limited time.
Hi Emily–It’s so good to see you here at gfe again. I am truly touched by your words and thrilled that my blog has been so helpful to you! I think that Gina was being a bit facetious in her comment as she’s an accomplished gf baker and more, even selling her own flour mixes and baking mixes). But it’s true that early on, we do stick to some very basic foods that we know we can eat, even indulgent foods (sometimes due to that entitlement thing … well, if I can’t have that, I can sure as heck have this!). I just love that you are sharing your newfound gf knowledge with others!
Thanks so much for the feedback, dear. I actually did do a two-part series, They Just Don’t Understand: Dealing With Gluten-Full Friends and Family, with the help of many other gluten-free bloggers that many have found tremendously helpful. Read Part I here and Part II here. I’ll update this post to include these links at the end as well.
Last, never feel guilty for posting a long, heartfelt reply here on gfe … I LOVE them! Discussions on these topics are not ones that fit into nice and tidy “character-limited” spaces. 😉
Heather @Gluten-Free Cat says
Shirley, hugs, hugs, hugs! So wonderful to be more than virtual kindred spirits! It’s so cool that we had a chance to meet face to face. The more I read your posts, the more amazed I am that we didn’t meet sooner. You have such a wonderful way of embracing the gluten-free life and helping others see that it’s more than a life sentence. It’s a rich life!
Yet another lovely comment from you, dear–thank you! It would have been wonderful to meet sooner, but I kind of think those things happen when the timing’s right. Glad it was finally! Thank you for showing the richness of gluten-free living on your blog, too. Love it! 🙂
Wendy @ Celiacs in the House says
What a great post. I have to say we all skipped all of the steps when the diagnoses came in. We were all so relieved to have a ‘cure’ and some validation of our symptoms after years of suffering. I think we started through the grief stages this past year when all of us realized that going gluten free was only the first layer of being cured and that other food groups would have to go including all grains and other things that have a cross reactivity. It was also discovering that going gluten free isn’t quite the magic cure we hoped for and that we were so sick and our bodies so damaged that other issues keep popping up. We have also been grieving the last year as we realize that we can’t really eat out and be safe and all have suffered glutening even when we followed the rules. So I guess we are delayed grievers at our house.
Hey there, Wendy–Thanks for sharing your family’s story. Many of us are so relieved to have that diagnosis and a path forward. And similarly many of us don’t have a straightforward path after all. As you’ve shared, it’s much more complicated. We find out over time that eating out can be more of a challenge than we thought due to those “low-level” gluten exposures you’ve previously talked about. More than gluten grains can definitely affect many of us. I still have a pretty long list of “no-no’s” in that dept and suspect “grain free” is actually the route I need to take. I am not completely healed either. That could be due to other intolerances and that damage that’s not easily resolved that you mention. I encourage everyone to watch Dr. Tom O’Bryan’s presentation in regard to that topic. Again, there’s much more than just going gluten free for most of us. Still I think you all are embracers who still have some valid, albeit belated, grief issues. I’m sincerely hoping that complete healing will come for us all. A gluten-free planet might take care of that!
Love this post! my husband was more in denial than I was, but I think we both hung out there a good minute
Hi Cheryl–You say so much in such few words … you awe me! Thanks for the kind feedback and sharing your and your husband’s perspectives. I’d love some stats on how many experience each stage and for how long. That would be interesting, but I suspect it would not tell much on the surface. Everyone’s personal story is what matters the most.
I pretty much skipped Step 3 and went through 1, 2 and 4 simultaneously. I’m now between Stages 5 & 6. I’ve started baking and making more food from scratch and sometimes I do this willingly and sometimes it’s more of a drudgery but that may have to do with my dislike of cooking in general, largely because I’ve never had a particular passion for cooking even when I could have anything I wanted.
Also, there are so many other things that need doing on a day to day basis that I run out time to do those things while also planning meals, shopping for food, cooking and cleaning up after meals. There use to be a lot of convenience foods in my diet that I’ve had to give up (which I realize is probably healthier regardless of the reason for giving them up). When you’re doing this solo, without any family members to lend a helping hand (mine are all half a continent away), it can be daunting.
Let’s just say, it’s a work in progress.
Hi Janet–I think you’re new to gfe–welcome! 🙂 Bravo on reaching Stages 5 & 6. Your point on experiencing some drudgery before with anything you wanted for meals—gf or not—is a good one. I find there are many easy gf meals to prepare with real food, but even I get a bit whiny from time to time. Like you, I did the same before though. The truth is most of the time, it’s just in my brain that cooking dinner will take longer than popping a packaged food into the oven, going out to eat, etc. Once I actually get moving, it takes hardly any time at all and usually the same or far less time than the other options. Having a well-stocked pantry and focusing on the gfe way really helps with all that. Thanks so much for sharing and all the best on your continued progress! Oh, and thanks, too, for providing such helpful info to Tara. You shared so many of my favorites and I’m sure she appreciated it all!
Thanks. I’ve actually been lurking for a while but haven’t commented on your blog before. I believe we sort of met at the Gluten and Allergy Free Expo in Chicago. If I’m not mistaken you were with Heidi when I ran into the two of you in the vendor’s room (I think it was on Friday afternoon just inside the entrance). I was the one with long, blonde hair and glasses wearing the Babylon 5 jacket. It didn’t dawn on me until later who you were (I can be a little slow on the uptake sometimes). I was feeling a little overwhelmed at the time or I would have remembered my manners and introduced myself.
Hey Janet–Of course, I remember you from the Expo! If you’d signed your comment “Janet from the Expo,” I would have known immediately. I sort of feel like we were introduced even if we weren’t properly, so no worries, dear! Yes, I was pal’ing around whenever I could with my buddy, Heidi. 🙂 I know what you mean about overwhelming. It would be nice to press the Pause button occasionally at those types of events and figure out who everyone is and then hit Play again. 😉 Thanks so much for delurking!
I am with you on Embracement being its own stage. Acceptance and Embracement are two different things much like Survivor and Overcomer are (had quite a few debates over that one lol). I think that Acceptance and Survivor are much alike, you are merely living. Whereas with Embracement and Overcomer, you are doing something with it. Moving forward and into that point where you can actually speak up and advocate for yourself and others.
Great post, Shirley. 😀
Hi Debi–You always add clarity to the discussion–thank you! Survivor and Overcomer are great descriptions. Acceptance and Survivor also make me think of the word victim. While we are all victims from time to time (through no fault of our own as is the true definition of the word), it’s best to get out of that role as soon as possible. There is no strength, happiness, etc. in being a victim. I took a class one time called Totally Responsible Person (TRP) and one of the key messages was there can be no victims with the TRP program. Take stock, move on, and thrive.
That was such a great post! 🙂 Thanks so much, it has helped to clarify how I’ve felt over the past few years. My sister was diagnosed with coeliacs a few years before I was, so I had seen her go through almost all of those stages. Because of that, when I was diagnosed, I was determined to embrace the diet and really kick gluten’s butt. I realised that this was the way to get better. Seriously.
But then the depression kicked in. And the anger, mainly at my family and the rest of the world because they could eat fresh bread every day. But I moved on. I accepted it and even embraced it. But then again, I still swing back into the depression sometimes, or anger. I don’t want to, but it’s SO hard! Especially when my family wants to watch a cooking show all about bread. So I end up mourning what could have been, how my life WOULD have been if I wasn’t a coeliac. I used to love baking bread in the oven, I loved baking cakes and muffins too… but now? Hey, I can make them gluten-free! And I even have the energy to function afterwards, yay!
Hi Theresa–Welcome to gfe! It’s so nice to meet you and your blog, G is for Gluten. 🙂 Incidentally, I don’t see an email subscription on your blog, do you have one?
I’m really glad this post was helpful. So many times we REALLY, REALLY want to put on our big girl panties right away and not be vulnerable at all. But we are human. You may find that eventually those other feelings go away. I have ZERO desire for gluten bread, truly don’t care if folks watch cooking shows full of gluten in front of me, eat gluten in front of me, etc. I think removing that stuff completely from one’s diet, even in the form of gf bread and such, for a good while can make one lose any desire for any of it. Others will disagree, but I don’t think you can NOT miss it until you’re not eating it, and again, I even mean the gluten-free bread. Gf bread, rolls, etc. are only an occasional treat for me. I don’t crave them. But of course, we’re all different. I love your ending on learning to cook gluten free goodies and then feeling wonderful afterwards! 🙂
Tina @madame gluten-free vegetarian says
I think my experience was similar to Wendy’s — it was such a relief to finally have an answer to why I was so sick, I didn’t feel angry or depressed. What I didn’t realize at first, was that other food issues would be cropping up once I removed gluten, such as dairy, and a new one, tapioca. I am not confident eating out, no matter how many precautions I’ve taken, I still feel anxious about it. However, I feel a gazillion times better without gluten in my life! It’s worth it. Definitely worth it. — Tina.
Hi Tina–Honestly, I don’t think that many of do very well if we’re hit with all the food intolerances at once. It’s just way too overwhelming. I had a month of gluten free before I went gf/df/sfx2/other grain free for 6 months. Then I eventually added the dairy, sugar, and some grains (like corn) back in. Not a smart move and now years later I’m going back the other way. We need to heed our bodies to heal them. It’s not a picnic from day one to the end, but yes, it’s definitely worth it. Thanks so much for sharing, dear!
Great post, Shirley! I’d say I never really experienced any denial, since I’ve never had a diagnosis–I just knew that along with all my other allergens, I had to give up gluten to get healthy (and am still working on it). I’d say I’m currently in the “Embracement” stage (great addition to the list) and appreciate what eating GF (and sugar free, and egg free, and dairy free, and meat free, and yeast free, etc etc!) has done for my overall health and well-being. I can’t say I’m entirely over the anger, though–it really is sometimes annoying when you’re out with other people and everyone else can choose anything from the menu and all you can have is (undressed) salad. Argh! That’s why it’s often better to stay home and cook your own food! 🙂
Hi Ricki–I think that those who go down a long self-discovery path of sorts may have an easier time of it, or at least may skip a stage or two. The desire to be healthy can be a much stronger force than some of the stages. I think gluten-free vegans probably have it the roughest. Undressed salad is hardly a meal. Then one has to try one’s best at such times to let the anger slip away and focus on the company versus the food. That can be hard indeed, so once back home eating the good, healthy stuff you know is safe … life is good again. I have to say I’ve been amazed at some of the places you have found that can accommodate your diet (and well) though. I do love hearing of those wonderful experiences for you! 🙂
Tia @ Glugle Gluten-Free says
Eh. I was all over the map with this one. I think I jumped straight to Embracement. I had been so sick with crazy things my whole life that I was just happy to have an answer. And the first day I went to Whole Paycheck and saw GF mixes, so I knew I could at least have crappy cake. Better than no cake. I never really felt a sense of loss because I lost the craving for bread and stuff after a couple of weeks. But I had already had all of these rules around addictions because I have so many people on both sides of my family with addictions. You name it, someone or someones is/are addicted. I refused to ever gamble in a casino because I knew I could lose it all, so I wouldn’t start. Same with drinking alone, etc. So, I already had those rules subconsciously around bread. Sam would have to move the basket away after I got one piece.
I did the bargaining a year later when I went to Italy. Since the few times I had accidentally gotten gluten that year it wasn’t too bad, I decided to take the two weeks “off” from my diet. That lasted one week. I was so sick I missed almost a whole day in Florence because I could barely move I was in such pain. Then I found out there is some amazing, naturally gf food in Italy. Way, way better than pizza or pasta.
Oddly enough, I have the anger surface every once in a while when I think about all of my family members that had such a hard time and/or lost their lives way too soon due to gluten. After talking more and more with my mom about the problems of so many family members, I am convinced of who had it. But most are a-typical symptoms. I just get angry because I miss the time I never got with them. Selfish, but I do. I never got to meet my grandmother or my aunt. I don’t remember my uncle. etc.
There’s more, but I won’t take up anymore space. Plus, I am getting all emotional. Now, I’m sad and angry Tia instead of happy joking Tia. I like the latter better. So……
A horse walks into a bar. The bartender says, “Why the long face?” Ba-dump-bump!
xo – Tia 😉
Tia–As some have mentioned to me, there’s definitely a pattern of those who have been the most ill and who are grateful for an answer seeming to have an easier time of it. As you’ve shared, that still doesn’t mean total embracement from day one though. Many have cheated just one single time and found out that it’s so not worth it. I can understand the anger and I don’t think it’s selfish really. I think it’s anger and longing for what might have been. We sooo need folks to get diagnosed in this country! And re: your family history of addictions, did you know that they can be related to gluten, too? Do some checking, but folks like Ron Hoggan have presented data on this in the past. I’m sorry sharing took you down that sad, emotional path. When thinking of family members, it’s easy for me to go there, too. I truly have to not focus on it. There are days with some folks that I never even say the word gluten. Just not productive in any way.
Love your jokes, dearie! Horse jokes are the best … Mr. GFE has a t-shirt with a horse on the front looking puzzled with a beer in front of him. Caption: I said, Hay, Bartender! 😉
I have been GF for 20 years and only had a brief visit to the anger stage. I was so relieved to actually feel better – the diagnosis was a godsend. When I was first diagnosed there were practically no GF products on the market, so creativity became the norm. I think the biggest challenge was having to read labels…the salad dressing aisle used to take 10-15 minutes.
It is so amazing to see so many varieties of GF and DF goodies on grocery shelves! I just saw an ad on television touting GF cereals – what a huge change from decades of searching for non-sawdust like breads and cookies in health food stores! And now some foods are labeled GF – what a miracle.
I am grateful for the diagnosis – saved my life.
Hi Thea–Welcome to gfe! 🙂 I do wonder if those of us who have suffered for so many years don’t win out after all, when it comes to the grieving part, or lack thereof. We all remember those early days and figuring out what we can and can’t have, totally looking at food and recipes in a new way, etc. However, I do think it’s amazing how quickly we can learn to handle it all like second nature. And certainly some more products have made many lives easier.
Thanks for your last sentence, too. I just had a celiac reader tell me that celiac doesn’t kill anyone. I emphatically stated that it does. We don’t need unnecessary deaths from a condition that can be usually completely cured by eating gluten free and healthy.
Thanks again, Thea!
Ina Gawne says
Shirley – what a great post! I was like you and skipped the bargaining phase…did have the anger and depression for sure. Now after 17 years, I am healthier and happier – I love love all gluten free food. The only time there is an issue for me is people who are so unaware, ignorant, nor do they give any concern over the very serious implications of gluten contamination. I still deal with this today with some family members – especially traveling for family reunions. Sigh. I just do my best to get on with it – and do most of the cooking, which I love anyways! 🙂
Hi Ina–Wow, 17 years … you’re a true veteran of the gluten-free diet–bravo, my dear! Love your sentiments and the way you cook gluten free over at Gluten Free Delightfully Delicious! 🙂 You share an ongoing battle for many of us. We try to keep ourselves safe and educate at the same time. Cooking and sharing our food is one of the best approaches, but there are times that these situations get to all of us. We can only hope that as more people get diagnosed that awareness and understanding spread.
Hugs and thanks,
Jocelyn @ Enthusiastic Runner says
I cried when I first found out I had celiac. Now, I feel so much better that I can’t believe I ever cried!!
Hi Jocelyn–Nice to have you here at gfe–welcome! 🙂 Thanks so much for sharing your story. Well, it’s really overwhelming to get the news; it’s a serious disease with effects on all aspects of our lives. But once we realize how “doable” it is and how much better we can feel, our initial shock and other reactions can seem a bit silly or unmerited. But hindsight is always 20/20, right? 😉
Kim (Cook IT Allergy Free) says
This is such an important post. Anyone going gluten-free, or anything-free really, should read this.
My son was so young that he was lucky enough to skip all of the stages and just jump straight to acceptance. His 30 something Celiac Dad however, went painstakingly slow through each phase. And after 3 years of being gluten free has FINALLY FINALLY gotten to the acceptance phase! LOL But, he can honestly say that he has never felt or looked healthier in his life!
Thank you for sharing this with us, Shirley and Heather! I really loved this.
Hi Kim–Thank YOU! I am amazed by the response to this post. I think it all relates to us being complex emotional human beings and the fact that food is so much more than food. Initially that whole idea can make the transition a hard one. Dissecting it a bit and living it can show how it’s really not hard … just very different. You make a great point about the little ones taking to gluten free so well. It’s almost like how youngsters can learn a foreign language so much easier than adults. It just becomes their “norm.” Yippee for husband finally coming to Acceptance stage. To see him and talk to him, you’d think he was at Embracement stage. Heather really helped me out with that part! 🙂
This was an amazing post, Shirley! Thank you for your honesty as well as everyone else that has commented. It is a good feeling to know that my experiences seem to be pretty common among those diagnosed with celiac. It is easy to feel alone in this. We need to keep these common feelings in mind and reach out to newly diagnosed people and let them know about these stages and that there is a light at the end of the tunnel – the embracement stage.
Thanks so much, Cindy! It does feel really good to be validated, doesn’t it? You’re so right about it being easy to feel alone in our gluten-free lives. I agree that we need to reach out to others and we also need to keep doing what all of us are doing here today for ourselves, too … interacting with other gluten-free folks, on blogs, in support groups, community and national events, etc. I have to say that it does feel like a wonderful embracement party when so many of us can get together at conferences, expos, and such. And that’s a truly great thing. 🙂
Tonia C says
This was a great post! I have to say I moved pretty quickly through stages 1-4, I was at rock bottom, which was why I had decided to try going gluten free, I actually HOPED for a terminal diagnosis- I was in so much pain and so fatigued and just absolutely at the end of my rope. Once I was gluten free (and dairy free a few days later) I started to feel better, but I wasn’t truly commited- I had a few times where I wasn’t careful, just lazy or whatever, and each time the reaction was more noticeable and more awful. Within a couple of months I felt so much better, and I’d had a few really bad reactions, it was easy to accept the gluten free, dairy free way of living.
What I hadn’t moved onto was the embracement- and I love that you added it because it is so true. I have been known for my cooking and baking- I even had a catering business for awhile- and it has been very difficult for me to move into cooking a different way. For my family, yes, but not for everyone else. And I’ve been scared to even TRY any yeast bread thing- I loved making homemade bread and rolls and kneading the dough, punching it down….really appreciating a complex dough- gluten free baking isn’t the same, it doesn’t require the same attention and for many that is great news, for me, it has felt like someone took away my “special”. Just this past weekend I dived in- I made cinnamon sticky buns, and they were delicious! My husband is my greatest supporter and my greatest critic so when he gave them a thumbs up I knew I’d had success.
Finally- embracement!! I feel better than I have in years and while my life is taking a different turn than I expected, my “special” isn’t gone- I’m even entertaining the idea of opening a cafe or bed and breakfast that caters to those with food intolerances! 🙂
Hi Tonia–Welcome, my dear. Your story is sobering to say the least. I’m so terribly sorry that you had reached such desperation before going gluten free and dairy free. I think many can identify with your story of incremental progress before really seeing results.
I’ve got great news for you, too. I’ve got a gluten-free, kneadable, yeast bread recipe to share with you. It some from Ali of Whole Life Nutrition Kitchen at nourishingmeals.com. Here’s the link. People are loving this bread, so do give it a try. 🙂 Woohoo on your cinnamon sticky buns, too. I’m all for those and how wonderful that your husband is so supportive (even if he is honest LOL).
Embracement is a wonderful thing for sure. I predict much more success for you and would love to see you reach that dream of serving those who are gluten free with a cafe or B&B (love B&Bs so let me know!). 🙂 I encourage you to also focus on all the recipes that are naturally gluten free for main meals, appetizers, etc. for your family and entertaining. There’s no learning curve and folks enjoy them greatly because they taste like they always have with no textural differences, etc.
Tonia C says
Oooh! Can’t wait to give the bread a try- thank you so much!
Yes, I do entertain with naturally gluten free stuff and I always have to laugh when people come expecting the worst and are given a wonderful meal just like I cooked pre-“special diet” days. The looks of awe and the, “Wait! This is gluten and dairy free?” just crack me up!
Hi Tonia– 🙂 Colleen also recommended the Healthy Breads in Five Minute A Day, too. Many have raved over that like she did, especially the brioche. Can’t wait to hear what you think of Ali’s recipe, too, though. 😉
You sound like you are actually doing really well. I love it when folks don’t believe recipes are gluten free or dairy free! Folks know that about my food by now of course, but they are still putting in their requests for their favorites, they are just gf/df (mostly on the latter).
Can I get the sticky bun recipe please? Thanks
My colonoscopy results were negative, despite GI symptoms, long-term anemia (practically my entire adult life) and IgG antibodies to all gluten-containing grains. I’ve been gluten-free for over six months, and I’m no longer anemic. The thing I hate the most about giving up gluten is the social aspect – it’s hard to go to dinner parties and eat out with friends and family. I hate being the limiting factor for everyone because of my diet restrictions.
Hi Mary–First, thanks for sharing your story on negative test results, but finding health through going gluten free. Second, if you were tested via colonoscopy, that’s not the right test. I’m not at all disputing what you say because others have told me their doctor told them they did not have celiac after a colonoscopy. But celiac simply cannot be diagnosed via a colonoscopy. The gold standard for a celiac diagnosis is blood testing followed by an endoscopy with biopsy of the small intestine. I’m so sorry that you didn’t get proper testing.
Socializing definitely requires some adjustment, but it’s very doable. Like everything else with living gluten free, it does take a different approach from the past though. Scope out situations in advance if possible. See what the gluten-free options are. Eat them, drink them, and enjoy them. Don’t even think about the dishes you can’t eat. Take it all in stride. If you believe it, you can do it! As far as limiting everyone else, there are so many possibilities for dining that really shouldn’t be the case. If family members do have places they’d like to go that you can’t eat anything at, then they can visit those spots when they are off on their own or with other friends and family. You do not need to feel guilty. You may be thinking that this is easier said than done, but once you start living this way, it’s just normal life again.
Sherri Stone says
Great post Shirley! I experienced all of the stages. I craved wheat products and over-ate them for years before my allergy was diagnosed. Back in 2006 my area had a limited selection of GF products and most of them tasted bad – which made the depressed feelings worse. I also would have rants to my husband about the things I missed – but no more.
Thankfully today there are so many great tasting options. I don’t feel like there is anything I’m missing anymore because I have found alternative GF recipes or products to replace them. Total embracement for me now!
Hi Sherri–Thanks so much for the feedback and being willing to share your story with us all! It’s really wonderful that you progressed from a difficult situation to embracement. As you’ve shared, one of the key factors in reaching embracement is finding foods and recipes that you enjoy. Usually it doesn’t even take that many because we’re creatures of habit and tend to eat the same ones over and over. 😉
Great post, Shirley, and I love the addition of stage 6. It’s been so long now I don’t remember all I went through, but I do remember crying. I think I skipped some of the stages though because it was such a relief to have an answer and to start feeling better and being able to function.
It’s important that people understand that grieving is a normal part of going gluten free. Especially when you talk to people who are in the acceptance or embracement stages, you might think you’re not supposed to feel the way you do.
Hi Linda–Thanks! Your experience echoes so many others including my own. We can make peace with the major change in lifestyle a little bit faster because we’re so relieved to have the answer. But as you’ve pointed out, we ALL grieve to some degree. It’s normal and it’s definitely not wrong even if the ultimate goal is to reach the embracement stage.
I am happy to say that we’re in the EMBRACEMENT stage (thanks Heather!). And it’s such a good place to be. This is such an excellent post Shirley. Your statements are so bang-on. We can be so darn negative, can’t we? Change should be seen as evolving and moving forward on your path. We can’t move forward with toxins in our bodies.
Hey Maggie–Yes, yippee for Heather and her identification of the happy dance stage! I was feeling pretty darned good about it before, but I feel even better about this stage with that label. 😉 Humans are, in general, resistant to change. It’s only when we let the resistance go that we can really embrace this lifestyle. 🙂 Great point on the toxins, too. Not only do the folks who continue to eat gluten and cheat continue with the damage, but toxins affect our perceptions, mental health, etc.
Raj @ Flip Cookbook says
Excellent post – and so on the mark! I’m not sure what stage I’m at.. I keep running between acceptance, embracement and frustration (which is I suppose kinda like depression only I’m not sad… just frustrated that things can be so hard)
I have noticed that others (non gluten free-ers) go through these stages too when I try to explain (and enforce) why I’m gluten free.
Hi Raj–Wow, so many great points in your comments–thanks. Frustration is a big factor. Living gluten free can be made easy, but one has to let go of preconceived notions and old routines. Often we make it hard on ourselve because we’re trying to do a one-for-one swap on old habits and foods. Taking a step back and re-evaluating can make a big difference. For example, I’m often asked what I do for food if I’m out and about running errands, etc. and get hungry. Well, often it’s as simple as eating my standby apple and a few walnuts. I don’t feel deprived at all when I do. I am not bored either. I see it as an opportunity to get in a fruit I love and nuts that are super healthy and that I enjoy. “Reframing” our days and routines can make a huge difference.
Very true and great point on others going through these stages, too. Usually we end up repeatedly reassuring them that it’s all okay, that we’re not suffering and doing great! 🙂
Thanks so much for commenting, Raj!
I think this is a brilliant post. Realizing it is true grief is an important connection for me. I was so sick by the time I figured out gluten was the issue, I think I only needed a few moments of grief over the actual food. But I have huge grief that comes from the adjustment to social interactions that involve food. (Shirleys meetings — where I can eat anything — are so healing for me.) Other parties are still misery. I’m no cook so bringing my own stuff is hard. I start out hopeful but end up in the corner with my celery stick getting angry at everyone. I feel like an outcast. Clearly I’m struggling with this part and wondering: How have you, who’ve struggled with this, overcome the problem?
Hey Delise–Thanks so much the feedback, dear. It’s much appreciated. I’m truly touched that so many are finding this post so helpful. So often we think as adults we should be “above” these feelings. We totally empathize with folks who get other serious conditions and diseases, but think we should “man up,” so to speak. But as you well know, when we don’t deal with feelings when we actually have them, we only delay the inevitable or worse have them simmering and disturbing us forever.
There’s a lot of advice on eating socially, but truthfully I don’t follow most of it. For example, I don’t keep protein bars (or any food) stashed in my purse. Some folks tell you to eat ahead of time. I rarely do that, usually only when I know there will be nothing safe to eat. I admit this issue is much more critical for folks with multiple food intolerances. I am a social girl and I choose to be positive. You won’t see me in the corner with a celery stick. Have I only been able to eat from the veggie tray before? Yes, I have, but that’s been a very rare occurence and when it’s happened, I still got a nice glass of wine or a fine cocktail to go with my veggies, I “visited” with folks, and I had a great time. So much is attitude. But there’s usually so much we can eat safely at such functions. Steamed shrimp (make sure they are not steamed in beer … rare, but it happens), salted nuts, pistachios, tortilla chips and salsa, potato chips, hummus and veggies or tortilla chips, are just some of the foods I’ve enjoyed at social functions. You don’t have to eat a lot … it’s only one meal. Most of the time we’re all socializing with the same folks. If it’s at their home, kindly talk to them ahead of time about what they’ll be serving. You’ll be doing it an inquisitive, pleasant way, not in a demanding way, but most folks want to take care of their guests anyway. So, often they’ll chat with you and find out what they could serve to accommodate you. Then they’ll remember and be sure to have those foods/dishes for you at future gatherings, too. Of course, most of the time at these gatherings, you’ll be taking a dish, too. You can take a dish that is filling enough that it could suffice if there were no other dishes you could eat. You can also take a dish that shows others how to feed you easily. If eating out for a social event, that’s even easier. Call ahead. Usually the day of the event, but several hours before, is a good time. Make inquiries on what they are serving. Work with them to get a safe meal. Their aim is to make the their customers happy. Often I’ve gotten a far better meal than the rest of the guests this way. Seriously. Delise, if someone else was telling you they felt like an outcast, what would you advise them to do? “Remove” yourself from the situation a bit and see what makes sense. You’re the same person as before, Delise. You’re just eating differently. There are tons of folks who eat differently. Folks with other food intolerances and allergies, folks with diabetes, folks on special heart-healthy diets, etc. I doubt they feel like social outcasts. They just adapt to what they can eat. Take back your power, Delise. It’s there! Focus on what you can eat, not what you cannot. Maybe I need to do another post on this topic, too, and perhaps we should have a discussion session on it at one of our upcoming meetings. Remember our meetings, too (and thanks for your comment on them). What do we eat at our meetings? Most of what we eat at them is naturally gluten free. Carry these ideas and dishes over to your other social outings.
Big hugs and a little push, too! You are one of the most confident women I know … this is just a momentary annoyance until you get your gf “social sea legs”!
Thank you for the tug (or kick in the butt) out of Stage 2 when it comes to parties. I needed it!You are absolutely right and I’m lucky not to even have mourned the loss of any food. Truly there is no food for which I haven’t found a BETTER gf version. My mother made the best carrot cake I have ever eaten in my life, Sunday for father’s day. This morning my just-turned-14 year old (only one in the family not gluten intolerant) made a gf coffee cake to die for. I just need those “social sea legs” and maybe next time I’ll enlist my daughter/cook to show off her gf recipes! Delise
Hey Delise–Your mother’s carrot cake sounds wonderful and so does your daughter’s coffee cake! 🙂 Once you start thinking the positive way, it will just snowball and the feeling of being deprived at social events will just fade away.
Carol, Simply...Gluten-free says
Great post Shirley. It is so interesting, I really did go through all that. My doctor tells people she had to drag me, kicking and screaming, into the world of gluten free and now I am definately in embracment. Going gluten free has been the best thing for me and not just for my health.
Hi Carol–I remember you talking about the stages you went through when you gave your demo at the Expo. I loved it when you got to the Embracement part. So did the rest of the audience. 🙂 You are a great example of all the terrific things that can come to one who goes gluten free. You have truly flourished and so many have benefitted from you doing so, Carol!
For me it was different and I am Italian so the thought of not eating pasta or bread was shocking but I was so sick I lost 30 lbs in 3 weeks. In the emergency room and ill all the time. So when my new doctors finally got it I was so relieved I wasn’t dying that I went into a mode where I just had to do this, no cheating, no eating gluten. The damage was so bad because I was miss diagnosed for so long (most of my life). It just wasn’t an option for me. Do I get mad yep I still do especially when family members ask me if I want this or that and they know I cant have it. Being gluten free for a year and a half I find gets easier but it is just something I have to do if I want to be here. I loved reading this, thank you.
Hi Debbie–Welcome to gfe! 🙂 I’m excited to check out your website later.
Wow, you did go through a really tough time, like a few others. Going gluten free compared to dying certainly makes folks more ready to give up gluten. I’m not being sarcastic. Folks who have had the worst time before diagnosis do seem much readier to do whatever it takes to get well. And they do it with no complaint.
I agree that family (and friends) factors can be tough. On the one hand, you think how can they forget that I can’t eat that? On the other hand, folks DO NOT truly “get” living gluten free until they are gluten free themselves. I know because I had a friend whose husband had celiac disease. They come to parties of mine and I was so clueless that I made no special accommodations for him other than having potato vodka for him. (Distilled alcohol is now considered gluten free though.) Be patient and keep educating them. Because celiac is genetic, chances are that several of them have the same issus themselves … they just don’t know it yet.
Thanks so much for stopping by and commenting Debbie!
Rainya Mosher says
For me, giving up gluten wasn’t too bad. My husband was the one originally diagnosed, so doing it “for him” made it easier for me. Now I realize my daughter has all the signs (even though she doesn’t have antibodies) so now we do it all together as a family. I don’t have a diagnosis for myself, but do so much better without it that I’m content.
Part of my issue, like others who still struggle, is that gluten alone hasn’t resolved all the issues. I’ve got other foods that I’m still trying to piece together in terms of optimizing my health. The “worst” one that I am still struggling through to acceptance with is dairy. I gave up cow’s milk years ago and love my almond milk now, but miss eating dairy cheese so very much. I’ve gone back and forth with denial and bargaining – “I’ll only eat cheese on my gf pizza once a week.” “Eating a cheese stick for a snack is better than going hungry, right?” “The milk in this delicious European gluten free chocolate bar is like the sixth ingredient… it’ll be fine” – that sort of thing. 🙂
One day at a time! Sharing with my friends and family helps A LOT. I’ve got some great folks who are truly interested in my adventures with food, so it helps keep me motivated. And discovering that vegetables are really our friends after all helped a lot, too!
Hi Rainya–You made a great point, too. So often we can do something more easily for others than ourselves. Plus, when you are doing it for a family member, it makes things easier in many ways because it’s not just you who is eating gluten free and not you who is feeling that you are limiting folks if you cook gluten free. Many don’t have a diagnosis, but realize how much better they feel without gluten. Now you are all well equipped to live gluten free for your daughter, too.
I’m right there with you on the dairy though, especially cheese. It’s not that I miss it terribly all the time. I’ve found wonderful dairy-free dark chocolate, love cooking with coconut milk, and do make most recipes gf/df, but eating out is much easier when you eat dairy. And then once one has done that, dairy seems to creep back in as you said. I know that dairy affects me adversely, too. And then there’s sugar … sigh. We’re all works in progress I think. You’re so right about family and friends who support you and are excited to see what and how you’re doing making a huge difference!
Thanks so much for sharing your experience!
I knew I had celiacs in November 2009. I am still at stage one. I hate the breads and grains. PHYLLIS
Hi phyllis–You and I have had quite a few communications on this topic. Since 2009 is a long time to be in stage one. You might start by writing down all the things that are holding you back and start eliminating them one by one. Many folks just give up breads and grains, even gluten-free ones. There are plenty of healthy grain-free folks. Remember our ancestors didn’t eat grains at all. They tended to die early, but it was more about the dangers of living during that time than it was about their diet. There’s a lot of support for living gluten free and grain free on a number of wonderful blogs. I’d also say that after one goes gluten-free 100% and grain free for a while that the alternative grains and breads will taste completely different and you may even like them. The main point here is to allow yourself to move on and to be open to other possibilities so you can eventually thrive gluten free. 🙂
Best of luck,
Susan Bessette says
Am I the only one? I’ve gone beyond embracement to ENJOYMENT.
I am lacto- and gluten intolerant. I soon took it as a challenge to find wonderful ways to eat (I love to eat)with all the new possibilities. Rather than lament the bread and cheese (okay, I lament cheese) I went on a trip of discovery to find wonderful foods that are non-gluten and non-dairy. and find them I did! My challenge is keeping my weight DOWN.
I love the attention I get. “You poor dear….” to which I enthusiastically lecture, “No! to the contrary!! Let me tell you all the wonderful things I have discovered…..food….tastes…..health….” I am a first class bore.
Gluten/dairy intolerance has made me unique. I derive some of my identity there.
I’ve recently been told I can be treated for allergies and they will go away. I have an appointment for Monday. Think of the relief! Think of the cheese! The shellfish! Ice Cream!!
But there goes my status, my identity. My weight! Right now I don’t eat ice cream because I CAN’T. What happens when I CAN?
What will I talk about at parties? What will make me unique?
So I suggest there is a level beyond embracement into enjoyment. Now there is a choice, will I really choose to lay down the status?
Rainya Mosher says
So agree with you on this! I thoroughly enjoy my gluten free/dairy free “predicament” 95% of the time. It took me a while to get here (a couple years truthfully), but even with a “cure,” I wouldn’t look back. (Okay, maybe if I could eat cheese and butter without issue, I’d look back a little bit!)
Yippee, Susan!! You are a great model for ENJOYING gluten-free living. I think Enjoyment is right there with Embracement! 🙂 I’m looking forward to seeing how you choose to proceed in the future. I’ve loved seeing you learn about new foods, your venture into eating more raw (LOVED that watermelon rind juice you shared at the farmers market on Saturday!), etc. You glow with health and enthusiasm these days, Susan!
Thank you so much for your comments on embracement! In the 18 months since my daughter’s diagnosis I have grown tired of the focus on the negatives. It was hard at first-but we eat well. What was hard was seeing my 18 month old in the hospital losing weight at a dangerous pace, and fearing she had cancer or worse no one would figure out what ailed her. So no, I am not going to complain about the price of GF pasta as my daughter thrives.
Hi Colleen–Welcome to gfe. 🙂 I appreciate you being here and sharing your family’s story. I don’t think any of us dispute that it can be hard at first. It’s just such a shift from the Standard American Diet, but that turns out to be such a good thing. My heart goes out to you on what you experienced with your daughter before diagnosis, Colleen. The folks who keep churning the negativity need to hear those stories or even see them firsthand. In my opinion, the negative media blitz is just another battle we shoudn’t have to fight. Isn’t trying to get folks diagnosed, trying to get labels that really show what’s in our food, etc. enough? It’s almost as if the journalists get paid double per word for all the negative articles.
In closing, I’m so happy your daughter is thriving now! Thanks for sharing the info on the Healthy Breads in Five Minutes a Day book with Phyllis, too. Sometimes it only takes one little tip like that to move us in the right direction!
Phyllis, take Healthy Breads in 5 minutes a day out of the library. The gluten free olive oil bread makes really good pizza-that you can actually rollout – and the gf brioche is fantastic. It makes a beautiful loaf that my parents kept sneaking pieces of, is excellent for French toast and cinnamon rolls.
I think my stages were slightly different… denial, anger, depression, bargaining, then acceptance. I still go back and forth between bargaining and acceptance. I have accepted that I am gluten free, and I don’t find it difficult to eat gluten free. But I still have a few restaurants back in my home town that I want to go to at least one more time and eat my favorite meal (which includes gluten) then I tell myself I’ll be satisfied and will continue with being GF.
Hi Megan–You haven’t been gluten free that long, so I think it’s wonderful that you are at the acceptance stage already. I love that you are now saying it’s not difficult, too. I know you didn’t believe that when I told you when we first talked. As the saying goes, “You’ve come a long way, baby!” You’ve done beautifully, dear.
I get the part about nostalgia for certain restaurants and certain meals though. That’s usually what drives most of us to re-create certain restaurants dishes gluten free. It’s not the same experience with the ease of walking in and ordering the meal, being served, enjoying the ambience, etc., but it can still be good. I know what a hard time you’ve had when getting gluten accidentally so I hope you decide to opt for a knockoff meal that actually eating the gluten.
Peter Bronski says
Hi Shirley… As usual, great post. It’s been very interesting how different people have (or haven’t) gone through the five stages. Like many of the commenters, I don’t think I went through the traditional 5 stages of grief. For me, the progression went something like this:
1. Desperation. Technically, this was my pre-gluten-free days. I’d been pretty sick for a while, and was desperate for answers.
2. Relief. a) I had a diagnosis, and b) I had something to do about it. Eat gluten-free.
3. Embracement. I jumped into GF with both feet first. I wanted to get better, and I wanted to give it my best shot. My early experiences with feeling markedly better just weeks after the diet change reinforced this positive adjustment in my life.
4. Depression coupled with Determination. Did I grieve losing some traditional foods? Sure. But that period was relatively short-lived, and soon replaced by determination to create tasty gluten-free versions of those same foods.
5. Deep Satisfaction. This is different from embracement. I continue to embrace the GF diet, yes. But it has more meaning now. From a food standpoint, from a culinary heritage standpoint, from a health standpoint, I’m deeply satisfied.
Thanks for prompting us all to think about this process!
Hi Pete–Thanks for the very kind words and for offering your slightly different perspective. I love Deep Satisfaction. I think that many of us are actually experiencing that. You’re right … it does go beyond Embracement. I think Deep Satisfaction is the reason I really am not the least bit jealous or concerned when other, non-gluten-free folks enjoy their gluten-full pizza, bread, etc. I am not the least bit interested because I am deeply satisfied where I am right now. Having that label has helped as much as Heather’s Embracement level because I’ve always had a hard time explaining that to folks. Thank you! Who knew that this process could be so complicated or so rewarding in the end? A few more notes … as is evidenced in the comments, many of us have felt desperate and then relieved. That drove us to be determined to make it work for us even if we did experience some depression and frustration. There is sort of a domino of emotions with transitioning to the gluten-free lifestyle. I so appreciate your thoughts, Pete, and I know others will, too!
The one I’ve reached is missing! LIBERATION! I don’t need to use #6 anymore and “pretend” it’s all good, positive, a victory, etc. I can just say “some stuff is better, some is worse – who cares” and not even think about the fact that I’ve an illness 🙂
Hi Rosanna–Welcome to gfe and thanks so much for your perspective! LIBERATION is a great one. When some stuff is worse, it’s not the end of the world, is it? Your comment shows how “freeing” letting go of some of the emotions and even expectations can be. There will be food I’ll never eat again, but I don’t care as you said. It is liberating for sure!
Marisa Voorhees says
Ah, this is wonderful! Thank you for the thoughtful way you laid out the stages. I jumped right in at acceptance and then got hit back with some of the other feelings as my life changed so drastically – quite positively – but still so drastically that when the depression hit it took a little time for me to figure out what was going on…a hair cut sent me into a “Who am I?” moment. Fortunately, I had embraced the lifestyle enough not to get derailed. I’m so much more than what is on my plate (and how my hair looks today)!
Marisa–Welcome, and thank you! 🙂 How poignant your comment is. I bet many can identify with it. Often we charge forward and then are unexpectedly hit with an earlier stage we didn’t really deal with earlier, or one that is surfaced out of the blue. “Who am I?” and the hair cut angst are the perfect metaphor for how going gluten free can throw us into a tailspin. There are definitely identify factors as many have shared. While being a gluten-free blogger, support group leader, etc., put “gluten free” in big labels on me many times, some would be surprised to know that there are days when some folks don’t see that label at all. We are so much more than this “one thing” as you say. 🙂
I think because i feel so much better without gluten and because i had already stopped all MSG and artificial sweetners due to allergies i skipped a bunch of steps. Actually just the past few weeks i’ve been having sort of a depression about the things im missing. My family and inlaws have been ggreat and i usually am fine…. but i miss going to restaraunts and not having to ask for an allergen list. I guess mostly i miss the ” anonimity of an allergy free diner”. I just want to orser a meal and not go through the hassle. I think we skip around through the stages.
Hi susan–Welcome to gfe, and thanks so much for sharing your experience with us. I’ve heard others say that they, too, had started looking more closely at their diet and revamping it to be healthier before going gf. They shared that they felt they had a “leg up,” so to speak, too. I think sometimes delayed depression settles in as we realize we won’t get to enjoy that food, that meal, or that exact same experience again. Others have cited the desire for diner anonymity and the hassle, too. I’ve come to do that so routinely and it takes such a short time that I really don’t give it much thought these days. I guess it takes time to reach that stage on dining out. One thing that makes it easier is finding restaurants and meals we love and tending to opt for those all the time. Even before gf, most folks tend to do that. We’re creatures of habit … mostly. That approach is not as easy on travel, but again, I just do it, without hesitation. I hope that eating out will become easier for you and you’ll find a way to get past missing things. It’s important to acknowlege the feelings before we move on I think.
I was diagnosed with celiac disease and highly allergic to dairy and eggs, it only took an immuniologist to figure it out not my gastro Dr’s. This disease claimed most of my life. I was dx with a clotting disorder due to it, my bones are dying in my left knee and foot. My father and grandfather died of a rare form of sm intestinal cancer, I was later to find out this may have been caused by untreated celiac disease (they both were young). I feel very alone in this process, even though I have the most supportive family. My husband and I were big foodies, and now this, I always had excuses why I got sick every time I ate. Iam so limited on what I can have. So to say the least I’m stuck in stages 1-2 daily. I can’t even eat @ my daughters wedding in 28 days Is there support groups for a freak like me? or books, cookbooks ect..Will I ever get to stage 5
You’re not a freak. There are lots of people who are in the same boat as you. There are a lot of resources available that can help you. Here are just a few suggestions:
This website is from Adventures of a Gluten Free Mom (Heidi Kelly). She’s also gluten, dairy and egg free (and a few other things as well):
The Cook It Allergy Free website has recipes and an app for the iPhone/iPad to help with finding/cooking allergy free foods:
Cybele Pascal had a website (and a couple of cookbooks) on cooking allergy free:
The Living Without magazine which has all sorts of ideas and recipes for multiple food allergies also has a website:
The Sensitive Pantry which features gluten, dairy and egg free recipes:
Allergy Fee Delights that features Gluten-free, dairy-free, soy-free, nut-free, and egg-free cookies and desserts:
Bottom line. You Are Not Alone! Blogger’s websites and Facebook pages will enable you to interact with thousands of others who are just like you.
Hi Tara–Thanks for commenting here on gfe. You’ve been down a very hard road for sure. You can get past this though, and you are most definitely not alone. This weekend I’ll be hosting some gluten-free friends and there are several who are gf/df/ef and I’m happily cooking for them all. Admittedly, there is more of a learning curve at first, but once one learns some tips, it’s doable. And guess what? We’re all foodies! Foodies who are living happily with these multiple food intolerances. 😉 Many fabulous foods and recipes are free of all three ingredients. So it can and will happen for you. I could not provide a better listing than the one Janet shared with you. Do check that out, subscribe to those blogs, those magazines, etc. You are not a freak at all and yes, you will get to stage 5. I bet that you can even eat at your daughter’s wedding. Email me and we’ll talk about some options. Seriously, please do! [email protected]
I think im stuck sort of between anger & acceptance. Im more than willing to share info/ tips with newbies to gf however i deeply resent that i have celiac that wasn’t diagnosed until 30 & after it already robbed me of so many dreams… its not so much that being gf is hard as it is ridiculously expensive & inconvenient. & its not so much that i resent being gf as i do being celiac… i still feel like i lost a dear friend as wheat was THE staple of my diet & i miss the flavors even though i know it was destroying me
Hi erin–It looks like you are new to gfe–welcome. 🙂 I truly appreciate you taking the time to comment and to be so honest. First, I hope you’ll take a look around gfe, particularly at the Recipes and the tip sheets on my side bar with meal ideas, treat ideas, etc. One of the key factors in my approach is that it’s not expensive to eat gfe. My grocery bill is no more than a gluten-full person’s bill. I only buy a handful of gf specialty products, and then not even weekly do I buy those. I focus on real, whole foods and super simple recipes and meals, but ones that still taste wonderful and are healthier, too. I think there are foods and recipes that can provide what you are missing from the wheat. I know what you mean about logically accepting something, but not totally coming on board otherwise. That’s been me with dairy. I also think it’s perfectly normal to feel robbed. I wonder what my own life might have been without certain illnesses and problems caused by gluten. Helping others–as you are also doing–helped me let that feeling go though. If I can’t change my past, I can certainly prevent others from going down the same rough road. Best of luck in letting these feelings go so that you can move on to the embracing gluten free. Please mail me if I can provide more specific help in resolving the “expensive & inconvenient” considerations for you.
Andrea @ Rockin' Gluten-Free says
Shirley, I loved reading this post again. Thanks so much again too for your kind words about my A to Z series and for doing the guest post. I pretty much went from stage 2 – Anger to stage 5 – Acceptance. Once in a while I revert back to stage 2 but then when I stop and think about how sick gluten made me, I get over it very quickly. It is hard being in the Chicago area though with the wonderful deep dish pizza and beef sandwiches. Really crave those sometimes but I know there are some delicious gluten-free alternatives out there.
I also loved Heather’s post too. You both rock!! 🙂
Hey there, Andrea–Thank YOU, dear! If you hadn’t asked me to write your guest post, I wouldn’t have put to paper these thoughts I’ve had for a long time. And Heather wouldn’t have given me the missing piece. Thanks for sharing your own stages, too. The memory of how ill we were certainly keeps most of us sensible about living gluten free. I’m still pushing for a gluten-free planet like Dr. Rodney Ford! Then we could all enjoy the same deep dish pizza and beef sandwiches. 😉
You rock, too … hey wait, that’s actually your name per your blog title, Rockin’ Gluten-Free, and Twitter name, too, so you have to ROCK! LOL Hugs,
Rebecca Siharath says
Hi! I just discovered this post! I am just starting to give up gluten! Upon reading your post I realize I am experiencing the bargaining/depression right now! It’s tough. I keep going back and forth. I was curious if there was a book or program to follow that would make this easier?
Hi Rebecca–It looks like you are new to gfe, too–welcome! 🙂 Even though the transition can be tough, it’s nice to know that these stages are normal, right? I know it doesn’t seem like it right now, but you will get through these stages and move on to other happier stages. At least part of those latter stages will come naturally as you feel better from going gluten free and learn how to handle different situations, how to cook gf, etc.
I don’t know of a specific book or program on losses of gluten. Certainly there are books, blogs, forum, etc. that let you know that you are not alone and offer all kinds of resources, tips, and support. One book that I love in that regard, which I believe is now out of print, is A Personal Touch on Celiac Disease. It can still be purchased used though individuals via Amazon and other re-seller sites though. It is a collection of personal stories and while many are focused on symptoms, others are focused on the emotions of diagnosis and recovery. I am a huge fan of personal stories for helping people get diagnosed and for allowing others to feel validates and not alone. I also really recommend subscribing to blogs that strike a chord with you. You can take a look at my listing here. I have a lot of blogs and sites on my list, but I believe that you can tell by reading one post and taking a quick look if it’s a blog/site that will work for you or not. Some of the blogs are more recipe oriented, whereas others are more personal with lots of interaction between the blogger and readers. And which ones appeal may change over time. For example, once you’re at Stage 6, you may only want to look at gf blogs focused on recipes.
Hope that helps some. Best of luck! Please feel free to shoot me an email with specific questions and check out recipes and tip sheets (50+ things you can eat today, 50 gfe meals, etc.) on my side bar. As in many situations, I think that just “doing it” will help you get through these stages. Often what we feared the most turns out to be much less difficult than we suspected and there are unexpected rewards. Many have said that about going gluten free. But just take it all a little at a time.
Kay Guest says
Today is June 20th and I just read all the comments that you have here. I just want to say to any of the folks who are new to the gluten free diet, go back and carefully study Shirley’s blogs (all her links, recipes and past posts) and I PROMISE that you will find advice, comfort, encouragement and just a downright commonsense approach to the gluten-free life. The gluten-free community on the inter-net is a godsend! I just wish I had it around when I married my gf husband in 1983! Oh, and may I also say that the recipes in ANY of the gf blogs are just GREAT TASTING food, that just HAPPEN to be gluten free!
(Shirley’s Garlic Cheese Biscuits are the best!)
Hi Kay–Well, I have to say your job as the captain of my cheerleaders is still in tact. LOL Seriously, thank so much, dear. I appreciate your belief in me and gfe! You are so right about the gf community online. It’s an amazingly warm and supportive one. We don’t have to be alone in any of our gf challenges … help is only a keystroke or two away.
Big hugs, dear,
Megan @ MAID in Alaska says
This has been on my radar to read all week and I just finally sat down and read it. I am so glad I did. Thank you for taking the time to write it and to share your wisdom and parts of your journey.
I think volley between anger and acceptance. Maybe I’ve finally accepted being GF for myself, but more angry over my children needing be to gluten free? I still find myself saying, “Why my girls? Why them?”
I’m going to print out this post, that way when I’m having one of those emotional days I can pull it, read it, and (hopefully) calm down. LOL.
Sending you hugs from Alaska,
Hi Megan–Great to see you! Thanks so much for taking the time to come back and read and to share your feelings so openly. I appreciate the kind words, too!
I feel many of us share your angst over our children suffering and having to deal with the difficulties of the gluten-free diet. My son is now 23 and living gluten free, dairy free, soy free, and refined sugar free. I truly wish I hadn’t passed my genes on to him, although realistically I know that all benefit from living gluten free. And the fact is that he could have had other issues, non gluten related. I know I can do it, but I’d rather he not struggle. He’s pretty good right now as far as accepting it all, making all his meals, etc., but there have been difficult times for him. None of us want that for our kids. Usually we worry way too much though. (Beth Hillson did a great job sharing her and her son’s story here.) I don’t want to get too philosophical, but I believe all the paths and obstacles we go down make us who we are. My son and I have even had that discussion. When I was worrying and saying how sorry I was, he was telling me that these trials would make him a better person in the end. And he wasn’t focusing on the health aspects at the time.
Glad you found my (and Heather’s) post helpful and I hope it will provide comfort on those tough days in the future. Thanks for the hugs from AK and sending more back to you, dear!
Such an interesting post Shirley – love how you put this into stages. My son was diagnosed with numerous food allergies in Dec 2010. He and I went through a number of these stages – Denial (we did numerous tests, and although there were some differences, many pointed to the same foods), Anger (Everyone else can eat that, why can’t I? It’s not fair!), Depression (Hated eating out, and eating in general became a challenge), Acceptance (once I figured out how to make foods that were allergy free and he liked, and he realized it tasted good), and we’re working on Embracement.
Hi Jeanette–Thanks so much for sharing your experience with your son. You’ve come a long way … now you’re someone whose gluten-free recipes are sought out. 🙂
I’ve only been gluten free for about 11 months. On any given day I still experience any one of those stages except for denial. Actually, the denial I have comes from not completely understanding my labs. My doctor told me I have celiac but the NP saw my labs and seemed surprised she called it that. I at least have gluten sensitivity but I guess it doesn’t matter since the treatment is the same.
I am like Heidi Kelly in that I don’t get an alert from gluten. I don’t get sick and don’t have GI problems. I am like you Shirley (thats my moms name:) in that removing gluten didn’t change how I felt or feel now. I did have an allergy panel done and it came up moderate for dairy. I have greatly reduced my intake but can’t seem to give it up entirely. I have bargained in my head many times especially since I don’t get sick from gluten. I will say though that I have not (knowingly) eaten any gluten since being diagnosed. I do have a host of other health issues as well. I have Hashimoto’s, adrenals are bottomed out, chronic fatigue, unexplained chronic back pain that I’ve been living with for about 8 years (MRI showed nothing. I had a total hysterectomy 3 years ago just shy of my 42nd birthday and am on bio-identical hormones. I get very little sleep. Now I wonder if any of these problems would have happened had I known sooner I shouldn’t be eating gluten.
I’m actually having a harder time right now than say even 6 months ago. For some reason I’m feeling very sorry for myself for the loss of spontaneity with food. Angry that after almost a year of eating gf I feel exactly the same. I’ve even gained weight because I think I’m over-compensating by eating too many gf “treats” to make up for the loss of gluten filled foods that I miss. There are only a handful of restaurants in my area that I will eat at. I hear the grumbles from my kids sometimes because they get tired of eating at the same places. My husband is supportive mostly but I know he doesn’t get it. I think he would understand it more if I actually got sick from eating the taboo foods.
I hate that my children see a mom who never feels good and is always tired. I also feel guilty on those days when I have the pity party over not being able to eat.. whatever. It just seems so petty. My guilt, though, comes from the fact that I have a daughter (18) who was diagnosed with type one diabetes when she was 9. Now that stinks! Talk about losing spontaneity and adapting to a whole new way of life. My dd has done it for 9 years and rarely complains. It’s a daily tight-rope walk living and taking care of someone with this illness.
I apologize for this sounding so depressing. It felt good to get it out though. I really do have a great life that is full of blessings each and every day. I do thank you for your blog and all the others out there. It has helped me in this journey immensely.
Hi Jeri–Welcome to gfe and thanks so much for taking the time to comment. Please don’t apologize for stating how you really feel. That was one of my main intentions of sharing this post … to get folks to air their grievances—literally. I want us all to know that we’re not alone, either in our feelings or our responses (like eating more treats to compensate for what we feel we’ve lost). I want us all to know that our very strong feelings are not weird. Also, I want us to write and chat together to “get these feelings out,” so we can move on as much as possible. You’ve been through a lot, Jeri. Frankly, I don’t like the fact that your NP is disagreeing with your traditional doctor. Celiac is celiac. I can see why you’d be in some denial. I think you need to revisit the specifics on your test results with the original doctor and find out what parameters he used for calling it celiac. The fact is you are paying him to provide your medical care. He needs to explain that so you can see the logic and data behind his diagnosis. Do not be afraid to ask for an appt for him to explain it. Take notes and then see if what your doctor tells you jives with all the other data as authoratative online sources and other resource material. In regard to your other doctor, just like all traditional doctors aren’t well versed in celiac, all NPs are not necessarily experts in celiac either. I’m not saying that either is incorrect, but get your facts so you’ll know. The sleep issue and other continued symptoms speak to vitamin and mineral deficiencies (e.g., magnesium) and indicate something is still wrong, Jeri. Maybe you have some other associated conditions that are coming into play. Perhaps you are still getting some amounts of gluten somewhere (e.g., some products labeled “gluten free” are not always and others may have gluten via cross contamination), too. We all have amazing blessing in our lives, but having them doesn’t mean we need to discount our other woes. It’s not wrong to want to feel well, Jeri. Everyone deserves to feel their best. Don’t give up. You may need to find another doctor or at a minimum be tested for other conditions, vitamin/mineral deficiencies, etc.
I’m glad to have helped some thus far and happy to chat more via email if you’d like. Keep us posted, Jeri. Hugs to you,
I’m definitely going through these steps right now. And I feel so much like Jeri. I don’t have an official diagnosis. For the last few months, I’ve been totally exhausted, and felt bloated and gassy almost all the time. Plus, I get nauseated and dry heave after eating with increasing frequency.
I expected the gassiness to some degree considering I had gastric bypass surgery four years ago, and my gall bladder out almost three years ago. But my sister suggested a couple of months ago that maybe I had a gluten intolerance. I did some research and a lot of the symptoms fit. My doctor refused to test me saying it wasn’t worth testing, and to just go gluten-free. Either it would help or not.
I’ve gotten better, but not enough. I’m now seeing a naturepath, and she’s tested me for food allergies as well as adrenal issues. Over the next month we’ll do some hormone testing too. I get my results in a couple of weeks, and part of me really wants to see something just to have an answer.
But at the same time, I’ve definitely been in denial (two weeks after going gluten-free I didn’t feel any better so I had a gluten-filled weekend and immediately paid the price). I’m definitely alternating between anger and depression. I’ve found myself bargaining, as well. I’m not quite sure I’ve really made it to acceptance yet.
I think my biggest frustration comes from the fact that I just don’t have the energy to cook right now, so we get take out or eat out a lot right now. And so I find myself focusing on what I can’t have rather than what I can have. I wish I had the energy to cook.
Ugh – as I type this, I just had a protein bar about 10 min ago (gluten-free) and I’m totally nauseated and am just waiting to dry heave or throw up to feel some relief. I’m getting to the point where I’m scared to eat. And I need to eat – my gastric bypass caused me to lose too much, and I’m technically underweight right now.
Sorry for making this so long. I just want to get this all figured out and feel better, even if it means living without foods I love. Right now I feel like I’m living without food I love and STILL not feeling better, so what’s the point.
Hi Kathi–It looks like you’re new here at gfe–I’m happy to have you with us. 🙂 I’m so sorry that you are going through such a hard time. You truly have a lot going on. First, the doctor who refused to test you should be reported, but I know that is not your main concern right now. Getting well can take time and when you have any other factors, like your gastric bypass, the recovery may be more challenging. It sounds like your naturopath is pursuing reasonable causes of your ongoing issues. I would also like to refer you and others to this post that my friend, Lauren-Lucille (The Celiac Diva), just shared. She made some really helpful points and others have chimed in on the comments sharing their stories and what made a difference in their recoveries. Not having the energy to cook is tough, but there are many gf options that take little effort and there are ready-to-eat options, too. I suggest that you take a look at my sidebar at gfe’s tip sheets, which includes 50 Foods You Can Eat Today, meal ideas, treat ideas, etc. Don’t make it too difficult. Potatoes baked in the microwave, chicken breasts grilled on the George Foreman, and veggies and/or salad can make for an easy delicious meal. Since you mention you are underweight now, don’t forget about your blender as a meal delivery system, too. Smoothies made with ingredients like bananas and other fruit, coconut milk, yogurt, greens (for when you’re braver perhaps), and protein (like almond flour, chia seeds, etc.) can make wonderful breakfasts and lunches, and even supplement your dinner. Last, it may sound hokey, but make a list of all the foods you can eat and start considering meals and snacks based on those. Once you get going, you’ll see how many possibilities there are and be less likely to focus on what you can’t have. My tip sheets will help with that, too. Email me with any specific questions, dear.
Delise Dickard says
I’m so sorry for your struggle. My doctor also told me that it wasn’t worth the trouble to do the simply Ttg blood test for celiac because I already knew the gluten free diet was helping me. I regret not having pushed for that simple blood test. Several doctors including Dr. Alesseo Fasano say that it is very important to establish whether or not you have Celiac disease before going gluten free. Celiac disease has such a wide variety of symptoms. The most recent research I know about was Fasano’s study in March 2011 (Center for Celiac Research, Univ. of Maryland) that states a whole spectrum of gluten related disorders exist and if you have sensitivity it is good to know where you are on the spectrum. Celiac, according to my reading of the study is an autoimmune disease that initiates damage to the small intestine, where gluten sensitivity is an immune response. But just to confuse us, they an have exactly the same symptoms. Our knowledge of gluten sensitivity without celiac is still extremely limited and most doctors don’t even know it exists. But many of us on this blog do, as well as the many people who are demanding gluten free products. My advice (and I’m not a medical doctor) is to get the simple blood test and then really try the diet. Let the doctors rule out anything else they think might be causing the problem because you may have several issues going on. I just had an upper endoscopy because I was having pain in a specific spot when I would accidently get glutened. As it turns out I do have an ulceration in that spot. It probably hurts when I bloat because it stretches it. The bloating, however, is gluten. The doctor isn’t convinced but I am! Its sad that we have to do so much research on our own but we only get this one body and we’ve got to take care of it. I wish you good health and believe you are on the right path in healng.
Keep us posted, Delise
P.S. I get glutened about 50 percent of the time in cafes that don’t advertise gluten free.
Hey Delise–Thanks so much for replying to Kathi in my absence and sharing your story. While testing is far from perfect, I agree that it’s very important, so I really appreciate your advice on that. Would like to talk to you more about your endoscopy and that ulcerated spot, specifically where is it? Small intestine? I am certain that you are right about it being caused by gluten. For you and others who can’t get proper testing or accurate testing or even testing from one’s doctor, I recommend the MyCeliacID test. I did a post on this testing and my results here. It was very validating for me to have that testing done. Because it’s genetic, one does not have to be eating gluten to take it. Again, it is accurate no matter what one’s diet currently is. We are our own best advocates, that’s for sure. I’m hoping that one day very soon this will change. I appreciate all you are doing to educate your doctors and the public on the real ramifications of celiac/non-celiac gluten sensitivity … diagnosed or not!
Joy at The Liberated Kitchen says
It’s true that the stages of grief apply to so many different life changes, including dietary changes. They don’t always happen in order, though!
I think for some of us, though, the embracing stage comes first. I know it was really easy for me to stick to all our family’s changes for about a year, (strictly gluten-free and the GAPS diet) when the changes I was seeing were dramatic and I was filling my head with all the information I could find.
After a while, though, my health still wasn’t perfect and I started questioning my experience and wondering if I needed to do more, or something different. A gluten challenge sealed the deal, but I think I did need to go through that to really commit for the long term.
We also revisit the stages of grief as we progress. My son definitely went through them in a nicely ordered way, but he seems to cycle back from time to time.
Hi Joy–Much delayed reply, but thanks so much for taking the time to comment on FB and here on your family’s experience with the stages of grieving gluten. Plus, I believe this is your first time commenting, so welcome to gfe! 🙂
You’re right, for some, there is that initial “knowledge is power” and go totally “gung ho” when you have found an answer, something that finally works! And lots of folks do also second guess whether they’ve found the answer, or all of the answer. Cycling back is not unusual either, as there can be various triggers to make you re-evaluate. For example, I have a friend who does wonderfully well living gluten free on a daily basis. However, when she found out recently that she wasn’t invited to a friend’s event and she was certain it was because she was gf and things were just too complicated with her as a guest. My friend felt sadness and anger, and that’s understandable. Sometimes we can let those situations roll off our back; sometimes not so much.
Thanks again for joining in the conversation, Joy. Incidentally, I love the name of your kitchen! 😉
Joy at The Liberated Kitchen says
Thanks for the compliment!
We do all go through these things, don’t we? I know that feeling of people being afraid to accommodate you so they just don’t want to invite you. I try to be really clear that we love to be included and while we appreciate the offer to try and be accommodating I am much more comfortable bringing something for our family. Eventually friends and family get used to it.
Joy–You’re welcome, of course. 🙂 My friend is always willing to bring wonderful food, but not everybody is accepting/accommodating even then. Most friends and family who care about you do adapt and look out for you, but there’s still a minority that does not. Sadly, I hear these stories quite often.
I’m a newbie to Gluten free does anyone know of any support groups in the central Florida area IE: west palm beach or north.I have so many diagnose I am confused.
My diagnosis’s are many and it seems each week just one more is found.how do you possibly cope and keep a smile on your face for the family,I just want to stay in bed and cry I hurt so much.any info would be welcome. Hugs
Toadey, don’t worry about keeping a smile on your face. It’s okay to be sad. Dealing with going gluten-free as well as other health issues is an enormous adjustment.
Your family can’t be supportive if you don’t let them know how you are. Even children can understand that mommy or daddy is sad because a big change has happened.
As for support groups, I Googled the words: celiac support group west palm beach. It looks like there is a Palm Beach County Celiac Support Group and a South Florida Chapter of the Celiac Disease Foundation. Start with http://www.cdfsouthflorida.org
A support group can really help a lot. If you have Celiac Disease and some of your other diagnoses are related, you may even find other people with one or more of your other diagnoses.
Hi again mpv61–Thanks for offering such helpful suggestions to Toady. I’m sure she and others reading will find them very, very helpful.
Hi Toadey–Welcome to gfe. I’m so sorry you are going through so much. Many of us have been where you are right now. I hope you have a really good doctor and are looking at all the ways to heal. It can take a good amount of time to do so. So happy that mpv61 offered you some suggestions. Having others to talk to face to face and knowing that they have been through the same or similar and got better can be very encouraging and helpful. Hope you can participate in one of those! Don’t forget to join us for the gfe virtual support group here on April 3.
Hugs to you,
Chef Laurie Gauguin says
That’s exactly the word I use (right on my homepage)- embrace. There definitely is a mourning process to go through, but then you realize that gluten-free living is the key to getting your health back. And, as we all know, health is one of the most important things in life, and it’s MUCH more important than pizza or bagels!
Embracing your gluten-free diet is about saying yes to your health and well-being. Sometimes it takes a while to get there, but when you do it’s both liberating and empowering.
Hi Laurie–Welcome to gfe! 🙂 How wonderful that you are spreading that message with your services! You’re right … for most of us, it’s not an instantaneous thing, but for many of us embracement can come fairly quickly as we celebrate reclaiming our lives through our health. And you will hear many of us say that we’re eating a greater variety of foods and enjoying food more than ever before!
Thanks so much for taking the time to comment!
Thank you so much for this!!! I am going through the process. I think what I miss most is not having to think so much about what I’m eating. I miss not being AFRAID of food. It gets better I’m sure but I get annoyed at going out to eat and having to examine the menu and explain to each and every waiter what gluten is!!!
Hi Peggy–You are welcome. I’m so happy to have you here at gfe, and I appreciate you taking the time to share your thoughts. Yes, it’s very different at first … really thinking about what we’re putting in our mouths, the specific ingredients, etc. You’ll be surprised at how quickly it become second nature though. The gfe approach, where one focuses on naturally gf food first and foremost, can make the transition much easier and will serve you well for the rest of your life. Be sure to check out my “Getting Started with GFE” section. Just click on the tab under my header and you’ll have printable tip sheets to put to good use. 🙂
Best of luck!
Rebecca Daniels says
Hi! Been gluten free for about a month. I am stuck in Stage Scared. I’m ready to tackle this head on but…
Scared I’m going to spend a whole lot of money, buying food I’ve just recently heard of and gadgets like tortilla press, bread machine, pasta maker, $$$ thinking ditching grains sounds like a good idea to me but what would my family think?
Scared I’m going to live all day in the kitchen and nobody will eat what I’ve cooked.
Scared that I shouldn’t have given all my food away to my friend, because my family is not happy with me right now.
Scared I’ll have to drive 20 miles to another state (yes it’s true) to the healthy grocery store. Or purchase food I’ve never tasted online and pay for shipping, which is not a risk I feel like taking.
Scared this is just the beginning and it won’t be enough and my diet is going to eventually be so limited that I wish it were only gluten free.
Scared of all the doctor visits and getting way too wrapped up in all this. And once again $$$.
Scared I’ll be so preoccupied with planning, cooking, stressing out and trying new recipes, etc… that I won’t have time to enjoy life.
Scared if I don’t do this all the way I’ll feel guilty and wish I did.
Scared I’ll become a food snob. I have seen people like that on the internet in blogs etc… I don’t want to become like some people who act like they are better, smarter and attach a moral aspect to this. I’ve seen so much parent bashing on some sites. People who act better than or that they love their family more etc…
Scared I’ll be isolating my kids even more than I already do. We homeschool and I already deal with enough questions and stares.
Scared about social situations and how we will handle it and how it will affect each person in my family differently. Because it will. How do I help each one deal with it. Do I have to be 100% together emotionally all the time? Because speaking from experience I can’t be 100% “with it” all the time. And my church has more potlucks than any other church on the planet. What used to be a blessing is now, well words can’t describe how it feels. Heartbreaking yeah I think that’s it.
I am not in denial anymore or angry (ok maybe a little bit, because I felt I’ve been lied to my whole life, milk and whole grains are good for you etc…Ever felt like throwing something at the TV during a Hidden valley or Wonderbread, or Campbell’s soup commercial) I am heartboken and it hurts. I am very depressed because I am greiving my mother’s recipes. I know I can change them but that’s not the point it still hurts. I am a good cook everyone says so. I know I can do this but it is like having an identity crisis. I compare it to my husband’s amazing guitar playing. It’s like sombody telling him no more guitar but you can play on banjo all you want! Seriously, are you kidding me? Even though I feel better and symptoms are decreasing I’ve tried to accept it but I am far from embracing it and I know it is fear that has it’s grip on me. God is helping me with that as he does everything else. But any advise is appreciated from those who have traveled this road. I really want “gluten free greatness” in my life. I really do want to be successful. Thanks and sorry this was sooo long.
Often airing one’s fears alone makes a big difference. I hope you’ve found it true after leaving this comment. I know that many will feel much better and ready to move on with their new gluten-free lives after writing their story down. Again, I think you’ve done some of that with this comment. Thank you for being brave enough to share it! I know it takes courage to put one’s self out there like you have. But you know what? You’ve probably spoken for many, many people. So, first, know that you are not alone.
I think you’ve come to the right place by visiting gluten free easily gfe because so many of your worries never enter the picture when living gfe. There’s no way that I was going to do most of the things you’re afraid of, so that’s how my gfe approach was “born.”
First, stop and take a deep breath. This is a lifestyle change, but it’s not a sort of death sentence. Admittedly, it can seem like that at first though. I’m going to give you my take on your comments and concerns.
“Ready to tackle this head on” … if I’d tackled living gluten free head on, I would have thrown away all my recipes and cookbooks, bought tons of gf products, bought lots of gadgets, etc. (all fears you’ve expressed), and that would have been a mistake. You need to give yourself a little time to figure out what exactly living gf means before you tackle it “head on.” You may well find that it’s not a “tackle” at all, but just a divergence down a different path. There will be jarring turns, but most of the path will yield to new and better places once you’ve followed it a while.
Gadgets … I own zero kitchen gadgets. No tortilla press, no bread machine, no pasta maker. I recently got a Vitamix, but that was a gift from dear friends, a bunch of gf food bloggers. I lived just fine with my Oster blender since going gf in June 2003.
“Ditching grains” … “what would my family think” … the key to living gluten free or even grain free successfully is to make foods that don’t contain those ingredients that your family already loves anyway.
“live all day in the kitchen and nobody will eat what I’ve cooked” … I spend almost no time in my kitchen. Dinners that aren’t baked or slow cooked might take 20 to 30 minutes to make at our house. Going back to my previous statement, I go with foods and recipes that my family has always loved. Think of basic dishes to start … chili, barbecued chicken, steamed shrimp,
“Driving 20 miles to the healthy grocery store” and “purchase food I’ve never tasted and pay for shipping” … I buy 95% of my food from the basic grocery store across the street. I live 30 miles from the healthy grocery store and maybe shop there once a month. I focus on eating real food and making dishes using that and I can buy most of that real food at the basic grocery store. As far as purchasing food online, I don’t recommend purchasing anything you have not tried unless your best friend who has your very same taste in food recommends it. 😉 I once ordered a case of gluten-free crackers from a local heath food to get the discount rate. These crackers are very popular, but it turns out that they taste like bird seed to me. Blech, I ate two. Fortunately, I was able to sell them back to the health food store. I didn’t take that risk again, and you don’t have to. But the good news is that one does not have to buy a bunch of gf specialty items. I use about a dozen in total throughout the year. Seriously. When I need to use flour, I make a mix of inexpensive Asian white rice flour and cornstarch, or I use almond flour. Almond flour is pricey, but it’s very good for you and a bag lasts me several months. I occasionally buy tapioca flour and sweet rice flour, both inexpensively from the Asian market. I rarely buy certified gf oats and I occasionally buy quinoa flakes. Those are just some examples. You’ll see tons of recipes on my blog that feature no special ingredients or only one or two special ingredients, and in small amounts. My approach on these ingredients can be seen in my gfe pantry listing and post.
Giving away all your food to your friend … that’s a completely understandable response. In hindsight, there might have been a few things you might have saved, but if these foods involved you cooking gluten-full food, you made the right choice. And IMHO, the sooner your family gets used to a gluten-free kitchen and gluten-free meals, the better. One might think that a gradual transition would be better, but gradual transitions rarely happen. They can make the other gluten-full family members dig their heels in deeper, so to speak. I do believe that there are a few gluten-full package products that can “co-exist” in a mostly gf kitchen, but they must be very few; otherwise, you will not heal completely. Cross contamination is very real. In addition, it’s very likely that some of your other family members may have gluten issues, too, since they are genetic.
Scared that it is the beginning and your diet will be so limited … this may be a very valid fear, but let’s look at it. If you haven’t read all the comments on this post, I urge you to read them. Most of the folks who have been gluten free a long time will tell you that instead of their gf diet being limited, it’s been just the opposite. When the same old processed foods are no longer an option and one looks to real food, it’s like a whole new world opens up. Simple meal ideas, snacks, etc. suddenly open one up to so many more options than get box x, y, or z out of the cabinet. Because they are simple, these are not labor intensive meals or snack prep either. One does not believe this can be possible until one starts living this way, so you’re going to start living gf and healthy to see this one in reality. I’m assuming that your concern about it just being the beginning and your other comments on ditching grains means that you think that living gluten free alone won’t be enough. That could be a valid concern, but in the end it may be more of a blessing than a concern. Once we go gf, many of us find that we do have other food issues. Sometimes it’s a matter of the state of our gut and if we remove some foods for a while, we may introduce them later. Sometimes those foods can be more easily handled in a mixed kitchen. For example, if I want to eat paleo, I might fix myself a baked sweet potato with an alternative topping (like olive oil) while I’ll still fix hubby a baked russet potato and top it with butter. I can cook both at the same top and the different toppings are no big deal. Everything is doable. Even with grain free, your diet won’t be limited. We tend to find other foods to try and incorporate in our diets. Zucchini “noodles,” spaghetti squash, etc. Nobody ever believes it beforehand, but most do not mix breads, noodles, etc. or grains in any form, once they go gluten free or grain free. When those are given up, we’re finally getting to taste the actual food. Case in point, I had shrimp fajitas today for lunch with no tortillas. I could have eaten them with corn tortillas, but they just “get in the way” of the wonderful flavors of shrimp, peppers, onions, etc.
Preoccupied with all things food … no need to do that if you keep it simple. Simple but good. More ideas on that at the end.
“Doctor’s visits … $$$ … too wrapped up” … it is not unusual to spend more initially especially if you’re seeing an alternative doctor who doesn’t take insurance. But if the doctor is a good one, you’ll likely be healthier and end up paying less than in the long run. For many, once you get over the initial hump, health care costs will level out or go down to nothing. Many gf folks find they no longer have those frequent visits to the doctor for things like bronchitis, strepp, etc. Being gf can make you much healthier. As far as “too wrapped up,” you may initially be very involved in trying to understand gluten issues and figure it all out. Once you are comfortable with living gf, you may spend far less time on the subject, unless you become a gf blogger, support group leader, etc. like I. 😉
Doing this all the way or feeling guilty … that’s a very valid point, but not necessarily something to be afraid of … depending upon how you mean it. If you mean living 100% gluten free, then absolutely you should be 100% gluten free, so go ahead and “do it all the way.” Doing it all the way—whether you choose to be gluten free or more, like grain free—should not be limiting or restricting though. I know that sounds like a contradiction in terms, but when you focus on what you can have and not what you can’t, it’s very freeing and you see more foods and meal possibilities than ever before.
Becoming a food snob … since you are so aware that you don’t want to be one, it’s very unlikely you will be. As far as the moral aspect, I have to admit that might creep in a bit. Especially if you see friends and family members who are suffering from multiple issues caused by food and refuse to consider that factor, instead going for traditional and usually ineffective treatments in the long term like meds, surgeries, etc. It can be very frustrating and at times maddening to be honest, and even worse heartbreaking. It’s hard to see a loved one dying of a condition that might have been prevented with a gf diet. But again, since you have seen these types of situations played out before, you are going to be hyper-vigilant about it and try to lead by example, not preaching.
Isolating your kids and social situations … when you are strong in what you believe in and see the health benefits in your family, that eclipses all else. It gives you strength. But not one of you has to be perfect. You’ll see many of us go matter of factly go through our days and then we’ll be blindsided by something that makes us “lose our footing.” For example, a friend called me a few days ago to vent because she found out that family members were taking a once-in-a-lifetime trip without her. A trip that she had previously discussed with them as something they all wanted to do badly and do together. The reason they didn’t invite her? They decided her food issues would be too hard to deal with. She was understandably shocked and devastated. Truthfully, her food issues would not have affected the trip. If they went to a place that was not very accommodating to her, she would have rolled with the punches. We gf folks tend to do that, and do it well. The world does not end if we end up eating less at one meal. It’s not ideal, but it does happen sometimes. So there will be some sticky issues from time to time with family and friends who will be clueless about your reasons for gf eating or how to eat gf, but strength in your conviction that you will instill in your kids will have you letting those situations (most of them anyway) slide off your back. But when they don’t slide off your back, you will show that you are vulnerable and human and your kids will get that or if they have a meltdown, you will get that, sympathize, and talk about how it could be better handled next time.
Church potlucks … you may end up eating only the food you bring unless/until others bring some gf foods that you feel confident in eating. You won’t believe it now, but focusing on the people and not the food so much will help. And you will probably be surprised that there are gf options. Some classic gf dishes served at potlucks and events are deviled eggs, ham, corn pudding (the recipes made with cornstarch), bean dip, baked beans (Bush’s Best beans are all gf; they are used in many baked beans!), layered salads, and more. You’ll get so that you can ask what’s in a dish casually (but diligently) and make a snap decision if you will eat any of it. Folks tend to take the same favorite dishes to potlucks. You’ll learn which ones are safe for you to eat. I talk about other tips on how to handle potlucks and group events here. One key point is to get in line first and serve your family first, lest the spoon from the macaroni and cheese end up in the baked beans. You don’t have to be obnoxious about this, just proactive. Much can be accomplished with a smile and brief explanation if necessary.
I could go on and on in reply, but think/hope that you will find my words helpful. You will be a great gluten-free cook. You will use your mother’s recipes. You may even find that many of your favorites of hers are already gluten free. Others may only require slight adaptation.
That’s a great analogy on your husband’s guitar playing, but there have been many who have lost the ability to play one instrument and gone on to excel in others. It’s an “Are you kidding me?” for sure. But it does and can happen. I was a great cook before going gf, but I’m an even better cook now. I know more about how recipes come together and I can create a meal from ingredients vs boxes and cans. You will be the same, Rebecca. But you’re only a month in. It will take several months for you to really feel comfortable, and that’s okay. Don’t rush yourself. Focus on naturally gf recipes. Focus on flourless and crustless desserts. Check out my gfe’s tip sheets. They are printable resource sheets that will help you through the first days of living gf/gfe and will get you thinking about all the foods and meals you can eat. Can your child eat the Snickers bar offered as a special treat after church? 50 Foods You Can Eat Today will help with that. Want to know which desserts to consider at the upscale restaurant that you go to for your anniversary? 50 GFE Sweet Treats will help with that. Want to start considering all the meals that your family eats and loves right now? 50 GFE Meals will help with that.
Other suggestions … subscribe to gfe updates, so you can get little doses of ways to live gf, recipes, etc. Be sure to join us here on gfe next Tuesday (and the first Tuesday of every month) for the next GFE Virtual Support Group. That’s an opportunity to learn more and share with others. But do what feels comfortable, a little at a time. You don’t have to do everything (other than be 100% gf) immediately. Maybe you can cook that great crustless pie next month, but this month you’ll focus on main meals gf, you know what I mean?
Sending you big hugs to get through this learning curve, but I have no doubt that you will soon have this figured out and be doing very well!
I have been through these stages also. I have accepted my gluten free life, but GF carbs really do suck. I eat lean meat, fresh vegetables, and fresh fruits. I mean it could be worse. I will stay on the diet because I don’t want feel crappy anymore. But after all is said and done, I am depressed because it will take years for my small intestine to be restored to its former glory.
Hi Claudia–Welcome to gfe! 🙂 I appreciate you sharing where you are right now. Respectfully, it doesn’t really sound like you’re in acceptance yet, or perhaps you’re going back and forth between two stages. That’s still perfectly normal. I hope you can get past it to full Acceptance and then Embracement though. Doing so makes life more joyful. However, by saying that, please understand that I am not dismissing your concerns on healing your gut. Sadly, some of us will never fully heal our guts; many celiac experts have stated this as fact. 🙁 But we can still live some very full and wonderful lives. There are actually some terrific gluten-free carbs if you consider real food and recipes made from it. You do have to shift your perspective though. And I’m all for meat, veggies, and fruit. I don’t necessarily believe that lean meats are always the right answer as most of us need animal fat, but that’s another discussion and best led by the folks are not only gluten free, but paleo/primal. Best of luck to you, Claudia! Thanks so much for taking the time to comment!
Hi Shirley! I went GF 9 years ago and have definitely experienced all of these stages to some level or another. The crazy thing is that I had to finally go DF about a year ago and am going through all of these stages all over again but probably to an even greater degree since it seems to limit me even more. I seem to be fluctuating back and forth between anger, bargaining and depression. Thank you for posting this! It reminds me that I will eventually get to acceptance and hopefully even embracent.
Hi Jamie–Welcome! Thank you so much for taking the time to comment and share your experience. What you are going through is not crazy at all. And you are definitely not alone. I have not finally gone dairy free myself. At home I do well dairy free almost all the time, but I find eating out much more challenging being dairy free. Yet I know how amazing I feel when I’m dairy free, so I alternate between those stages for dairy, too. If you have time to read through some of the comments, you’ll see others who have experienced the continued stages of grief due to other food intolerances or realizing that they can’t eat out gluten free safely. You are not alone and I’m glad this post and the comments have helped you realize that.
Best of luck on all!
Kate @ Eat, Recycle, Repeat says
What a great post! #6 is definitely the key – my life is infinitely more joyful without gluten, and I embrace that each day!
Thanks so much, Kate! I’m thrilled that you are at Stage 6! Your joy shows through. 🙂
I really needed to read this today! I am on a business trip with my husband and staying at a hotel and dining out with his colleagues is VERY difficult. RIght now I hands are very swollen because I ate something accidentally and have another dinner out that I am dreading. I really felt quite despondent about the whole GF thing – cycled right back to anger! At home I embrace it! It’s good to be reminded that this too shall pass…
Hi Em–I’m so glad you found this post helpful! Welcome to gfe, too. 🙂 I’m terribly sorry that you got “glutened.” It’s always unpleasant. The anger can be warranted and understandable, of course, but FYI it also be a result of getting glutened. Gluten issues are largely brain, skin, and gut issues per Dr. Rodney Ford and I think most of us can see that, but we can’t always recognize all our own symptoms after getting glutened. Yes, this, too, shall pass as the saying goes. But you might also want to read my post on recovering from being glutened and all the comments from readers. There are helpful tips on helping our body get past being glutened and others on more “preventive” measures for the future, so to speak. I hope you are feeling much better today! Remember to focus on ordering foods that are likely to be gluten free anyway and don’t be shy about reminding your server you need gluten free food. You can do it in a pleasant way that won’t disrupt anything (I know that can be a concern when dining with business colleagues), but will help ensure your safety.
I find it really exciting finding gluten free recipes that actually taste good.
Finding others that are also going gluten free and exchanging ideas to support each other.
GF girl 123 says
After going GF and having some accidents with gluten I learned that is much better without.
It’s sad that you can’t eat the same stuff as you used to, but you a whole new world of recipes to try, different flours and even restaurants that have GF menus too.
Just take as an opportunity to try new food isn’t of mourn for food that you were just eating without even thinking.
Interesting thing about Kubler-Ross’s study is that all stages can exist at the same time, at least partially.
I have known that gluten free would likely be part of my future for many years, and have fed gf family successfully. Now I am 4 months into daily living. Boy howdy!! The things I never knew I never knew. (Who knew that the seasoning on ____’s steaks had gluten in it?!) I am so blessed to have family I can bounce things off. And a church family that tries to understand, or just lets me be different. (There are two ladies that run interference so that I don’t have to try to explain things and not cry in the middle from exasperation. What a godsend!)
1)Denial- all the years I dragged before I HAD to figure out what was going on. And wishing that some kidlet issues aren’t gluten related. But they likely are. And dreading what that is going to take to pull it off.
2)Anger- Still bouncing in and out of here, but mostly as frustration. Especially when companies give me stupid answers. And when I just want to do, not think or be different. Food scarcity is weird when you are surrounded by things to eat. And MD’s who look everywhere else for answers.
3) Bargaining- Just let me get the kids out of the house. (Nope. 5 to go.) I don’t have to be OCD about this. The kids can still bake cookies if I’m not around it… (Well, they can bake cookies, just not mix them.)
4) Depression- yes, partly influenced by my gluten reactions: brain fog, dizziness, no energy, burning shoulder muscles, bottomless itchy burning acne and not sleeping well. And partly just tired of asking and explaining repeatedly and not feeling like I get or give meaningful answers. And not wanting to eat away from home ever, unless Jen or Zelma are in charge.
5) Acceptance- parts of it. Diagnosis, yes or I wouldn’t have told MD to run the panel AND insisted on the GI referral. Diet, yes. Having to eat rice flour and tapioca in order to bake anything, not on your life!!
6) Embracing- not sure I’d call it that. But I am determined to figure out what I can do and how things work so that I can have my old play-with-food-and-know-it-will-work security back in a new arena.
Truly, most of the food my family eats is already fine. Maybe we have to thicken with a new flour or use a new bread. But it won’t hurt me to learn something new.
The hardest parts for me (right now)are: trying to learn what questions to ask when I am trying to figure out is something is safe; trying to explain gluten to people who have never heard of it(My favorite, “You can have hot fudge?!” “Yes, IF..”); desperately searching for information on personality quirks for my new baking arsenal, and the rules to go with them. So tired of reading “it’s all just science.” Pretty sure I didn’t miss that information in my HS chemistry class.
Wow. Look at everything I just figured out. I’m all over the place!!
So if there is some wisdom to share, I could likely use some!
Hi Jeanette–I have to sincerely apologize. Somehow I missed replying to your heartfelt comment. 🙁 You emphasize something that I say to others all the time, unless you live gluten free, you can’t really “get it” 100%. That’s why—as you well know now—it can be so risky to let others feed us, eat out, etc. I suspect that you’ve figured out most of your concerns by now since a few months have passed. You were well on your way to dealing with everything/changing up things to make them work for you and your family when you left this comment. You can’t conquer everything at once obviously. You take it one day at a time and before you know it, you’re well into gluten-free living and the things that stumbled you up early on no longer do. Usually, you will be taking for granted not only your newfound health after a while and not realizing it, but you’ll also be taking your coping/management skills for granted before you realize that you’ve internalized them liking reciting the alphabet or breathing. I recommend that you also read my They Just Don’t Understand Series (Part 1 and Part 2) because at least some of what we agonize over, we need to let go. Some of our efforts will always be futile because of the folks we’re dealing with and exerting energy on them doesn’t serve us well. You’ll understand more when you read those posts. If you’re still reading, I’d love to hear back from you and I promise to be paying attention and reply promptly this time.
I just finished reading this article and wished that I had seen it when I first realized I needed to go gluten free. I have been experiencing these symptoms and didn’t realize what they were. As I read the article I just sat here crying realizing that I really am not crazy! Thank you for such an insightful article!
skunkladytoo–First, welcome to gfe and, second, you are welcome for this article, of course. I’m so glad you found the discussion so helpful. It really helps to know that our jumble of feelings (often what they feel like) are normal, that we are not alone. You are not crazy at all, dear. And you will get through this. Be prepared to move on, but don’t rush yourself. Just acknowledging your feelings is often enough to help you get to the next stage though, and although we all go through similar experiences with this major lifestyle change, we’re all a little bit different, too.
Hugs to you!
Margaret Clegg says
Oh my goodness. Yes!!!!! I’m sharing your comments and a link in my blog I’m writing for tomorrow. Embracement!!!! Yes!
Shirley Braden says
Hi Margaret–I appreciate your comments on Facebook and think this is your first comment on gfe–welcome! I’m so glad this post resonated with you and I look forward to reading your post! Thanks for the link back, too. 🙂 It’s definitely important to acknowledge the changes in one’s life and let one’s self feel them, but it’s also important to know that being gluten free can bring so much good and new to one’s life, so embracement makes so much sense. Doing what feels good will bring more good to us! Sounds corny, but it is true. Being gluten free has actually given so much more to me and so many others who I know that are gluten free than it has taken away.
Lisa Rickman says
We’ve EMBRACED our diet for quite a long time, but I will admit that it is easy to slip back into the DEPRESSION stage, especially when you have to eat out of coolers on vacations or make sure you get a place where you can cook all of your meals (not much of a vacation). When you find out about the parties you haven’t been invited to. However, I truly feel blessed that we eat this way. I have researched way too much and it has gone beyond gluten in our family. Our health far outweighs the short-lived ecstasy of a few Krispy Kreme Donuts, even if we could eat them. Sure wouldn’t mind a decent beer once in a while though. 🙂
Shirley Braden says
Hi Lisa–We definitely all have our moments when we experience the feelings of hurt from being left out and the other challenges you mention. The challenges are greater when there are additional food intolerances, which I know is true for your family. Eating gluten free and more free is a blessing because we actually know what’s in our foods and many of us don’t simply buy foods labeled gluten free (even if we’re “just gluten free”) because we are focused on our health. Learning to read labels comes in handy for far more than avoiding gluten and food allergens. 😉 As far as the beer, Lisa, I’ve heard there are some really terrific gluten-free beers. The problem is that they are not widely distributed. Companies like InBev (which acquired Anheuser Busch several years ago) control the marketplace and won’t let truly good gf beers in. I am not knowledgeable about it all, but it is a known problem. The “gluten-reduced” beers—which really means that the gluten is broken into fragments so mall it can’t be tested properly—are the ones being distributed widely. The FDA needs to ensure that these beers are clearly labeled unsafe for the gf community, but I’m not holding my breath. These beer companies that distribute the “gluten-reduced” beers have big budgets and, therefore, big voices when it comes to the FDA. 🙁
The first Sunday of August 2014 is when I finally realized that I was Gluten Sensitive and have probably been my whole life. Quite a revelation at the age of 61! Why do I remember the date so precisely? My mother passed away the next week after a 5 year battle with colon cancer. That was a blessing because if I had to deal with going gluten free with her still alive I might not have survived… Sounds odd? Knowing that I carry an Epi-pen due to many life threatening allergies, including shrimp, she set me up and lied to me on a Mother’s Day to get me to eat a dish with shrimp in it! I took liquid Benedryl as soon as I started having symptoms and used my Epi-pen. The ER visit was expensive and my mother had to pay the bill.
I have not mourned the gluten. If I get a microscopic particle of gluten in my system everything from my mouth to my waist swells and all of the muscles in that area cramp completely. And even as a small girl I never liked any breads, pancakes, waffles. When I went gluten free I lost 40 pounds in 3 weeks without any effort what so ever. (My daughter-in-laws were so concerned that I was dying that they took their concerns to my husband. It was the gluten that had made me overweight for most of my life!) I haven’t grieved the gluten at all. I have taken a humorous bent to it all. I love sites like yours who give free advice and recipes, which I often adapt to my needs. I am one of 10 to 15% of gluten sensitive patients that are also allergic to all things mammal. I am allergic to all night shade produce and all melons. A piece of watermelon the size of a sugar cube will make me pass out and quite breathing. I have been cooking full meals since I was 7 years old because my parents both worked. Getting used to cooking gluten free has been an adventure. My notebooks of gf recipes have a cover label that I designed. It has a picture of Marvin the Martian from the Bugs Bunny cartoons welcoming me to COOKING ON MARS! That sense of humor and adventure really helps me get through the minefield of gf. By the way, I take my own food everywhere. I do not trust anyone anywhere to keep me safe. If you have to go into a eatery with someone who is going to order their food there just let the staff know that you have a medical condition that makes it so that you have to eat your own food. I have never had a problem in any eatery. In fact, I have several places that my husband and I go to that actually smile when they see me coming! So whatever you have to do to make it through this minefield with ease DO IT! Utah is the best place for this GF girl!
Shirley Braden says
Hi Kathy–Welcome to gfe and thank you for sharing your sharing. Yours has been a difficult journey for sure. I am so sorry for the painful challenges (understatement) that you have faced. There are quite a few folks who don’t go through grieving at all because they’re just so grateful to have answers and feel better. I love your positive attitude and spirit for gluten-free and “more-free” living! Thanks so much for sharing it all with us. I know that your story will be so helpful to many reading! Thanks, too, for the lovely feedback on my site and others. I’m really happy that you can put our recipes to use, even with adaptations needed to keep you safe.
Happy 4th! All the best,