Although I think these are the 5 things you need to know when you go gluten free, it will take some time for you to fully understand all of them. This is a listing that you might want to re-read at different times along your gluten-free journey and see “anew,” so to speak.
These 5 things might not all make sense until you’ve been gluten free for quite some time. But I think it will be helpful to consider these 5 Things and keep them in the back of your head as you face different challenges along the way.
This list is not an all-inclusive one at all. It’s simply what’s been on my mind when helping folks make the transition to gluten-free living and seeing them well into their journeys. So I’d love it if after reading my 5 Things that you’d add your own “things you need to know when you go gluten free” along these same lines in comments or give your thoughts on the five that I’ve shared.
5 Things You Need To Know When You Go Gluten Free
1. How You Start Out Living Gluten Free Is Not How You Will Eventually Live Gluten Free
The first few days, weeks, and even months of living gluten free are not a cake walk—pun intended. Many of us are shocked at our diagnosis. We may be grieving the loss of favorite comfort foods. We are learning to live with not being able to pick up just anything to eat on the road or grab a bite with a friend at an old favorite eating establishment that should probably be renamed “Gluten, Gluten, and More Gluten.”
Some of us end up barely eating anything at first because we don’t know what to eat. We’re scared of harming ourselves by eating products that might contain hidden gluten or we’ve tried a few ready-made gluten-free products and they tasted awful.
Yes, horrible gluten-free products still exist, but there are some terrific gluten-free products that you will learn about (and add to your kitchen shelves) over time. And it’s when you stop relying on products and start embracing real food that’s naturally gluten free as your main source of gluten-free food that you’ll really start relaxing and enjoying living gluten free.
That last statement will seem contradictory to those of you who have learned to rely on convenience foods and have avoided cooking, but I promise you that it is true. That concept is the whole backbone of my gfe approach.
And I’d be remiss if I didn’t mention that many who start out “just gluten free,” end up being “more free.” We can’t conceive of such at the beginning. “Just gluten free” seems impossibly hard, but over time we might find out that our bodies do so much better without other foods, too.
Those foods are different for all of us. We each have to find our own individualized program that allows us to be at our peak performance daily. (We don’t have to be athletes to want that for ourselves and our families.) And my “Shirley plan,” your plan, “Susie’s plan,” etc. will all be different—except for being gluten free, of course—and that’s perfectly okay.
2. The “Experts” Are Not Always the Experts; You Need to Become Your Own Expert
Usually at the beginning of our gluten-free path, there are lots of “experts” telling us what we should do and how to do it. The “experts” can be medical professionals, like physicians, dietitians and nutritionists, but they can also be family members and friends, bloggers, health store staff members, etc., all trying to weigh in and tell you what to do.
Listen to all the guidance, but don’t necessarily heed it all. Become your own gluten-free expert over time—both an expert on what living gluten free truly means and an expert on listening to your own body.
While there are some amazing medical professionals helping gluten-free folks every day, changing their lives for the better, and, thankfully, most of us have had a few such individuals playing a major role in our return to health (and we’ll be forever indebted to them), there are also horrid ones, who are giving bad and outright dangerous advice.
Two quick examples: A local gastroenterologist told one of our support group members that she had damaged villi, but not enough to constitute celiac disease. He told her to keep gluten in her diet, but eat it only to the point that she got diarrhea (her main symptom) and then cut back on gluten.
Another support group member who experienced other symptoms after going gluten free was told by her neurologist, “well, maybe you’d feel better if you ate some gluten.”
As a gluten-free support group leader and blogger, I hear these horror tales all the time and have plenty of my own pretty awful personal experiences. I have educated myself over time on what is “absolute truth” and what is not, which “gluten-free” products and ways of living work for me and which do not, and you will, too.
When you need medical help for ongoing issues related to celiac/non-celiac gluten sensitivity, seek out excellent health care professionals and those who truly understand these conditions via other friends and family who have celiac or NCGS. Fellow support group members, members of online gluten-free forums, etc. can be a good place to start.
3. Going Gluten-Free Gives You the Unexpected Gift of Learning Everything That Is In Your Food, Not Just Gluten
There’s often some pivotal point in our lives when we really start looking closely at what we are eating. Going gluten free can be that point for many.
Before going gluten free, I really had no idea what I was eating most of the time when I was eating a processed product. I never looked at the ingredients on the label.
Now I’m not talking about looking at calories and fat grams. I looked at those for years and still had no clue what I was eating. Plus, what I thought constituted a healthy product at the time was anything but healthy.
Well, it turns out that reading the label of a food product to determine if it contains gluten is pretty eye opening. At first, we might fixate only on the gluten component—and we most definitely need to get that part right for sure—but then we start getting curious about what all the other ingredients are.
We might start out looking up these odd, chemical sounding names to see if the ingredients contain gluten, especially hidden gluten (something that is becoming less and less of a problem today because of the gluten-free labeling laws) , but then we learn what these ingredients are and their sources and we decide, “Nope. I don’t want to eat that.” The end result is that we not only ensure that food is gluten free, but we also ensure if it passes our own standards.
Much that qualifies as food today is not truly food. Michael Pollan did a really good job in his 2008 book, In Defense of Food, of explaining how the FDA changed its rules in in the early 70s to allow “edible food-like substances” created by food scientists.
When I read the data he shared, I was absolutely shocked at how much our “food” has changed and what is not only allowed as ingredients in food products, but also how products can be labeled as “x” when they contain not even a little of “x.”
Pollan also shares how wheat, corn, and soy are the primary ingredients in foods today and, therefore, the main things most in the U.S. are currently eating. In Defense of Food is also well known for the food rules Pollan shares, which he recaptured and greatly expanded upon in his 2009 publication, Food Rules: An Eater’s Manual.
Both are New York Times bestsellers and totally eye opening. By the way, my friend Melissa (Gluten Free for Good) also has some simple rules for food—20 of them—that are also very much worth a read.
4. It’s Not About Everyone Else, It’s About You and Staying Safe So You Will Heal
Many of us have spent our lives getting along with others, catering to others, not making waves, etc., and this often can be especially true for those of us who are women. As mothers, wives, best friends, and so on, we’re used to taking care of others and making sure others are happy, sometimes setting our own needs aside. The same can be true of men as well, of course—especially those who are parents, caregivers, and so forth.
So it can be difficult for many of us to speak up, ask questions, make sure we’re served first at a group event, etc. to ensure that we stay 100% gluten free. But you absolutely need to do that and you will learn how to do it in a way that keeps you safe and is also gracious.
Yes, there will be people who make life difficult for you, question you, make fun of you, etc., but you are doing this for your own health, so you must remember that and go forward in making yourself the top priority and staying safe. (Note: If you need help in learning to deal with others who don’t understand, please read They Just Don’t Understand, Part I and Part II.)
And the Most Important Thing of All That You Need to Know …
5. You Hold the Power
There are many, many great resources for gluten-free living … knowledgeable individuals, blogs, cookbooks, some products, recipes, etc. They will help you and can potentially change your life for the better, make gluten-free living easier, etc. But the main thing you need to know is this wisdom from The Wizard of Oz:
Yes, Glinda, The Good Witch, said it after the fact, so to speak, after Dorothy had been through all of her struggles. She didn’t immediately tell Dorothy about the full power of her acquired ruby slippers and, more importantly, the power of her own spirit because she didn’t feel that Dorothy was ready for that information yet.
She felt that Dorothy had to travel the yellow brick road and learn much along the way. Likewise, you might not realize this wisdom regarding your own strength until much later in your gluten-free journey.
As we’ve already discussed, most of us feel anything but powerful at the start of our gluten-free journey, but at some point you will appreciate the fact that you were really much better equipped to deal with this challenge than you ever imagined and you will be absolutely amazed at how far you’ve come.
Yes, it’s corny to say that the gluten-free journey is a yellow brick road with numerous pitfalls and challenges along the way with the end point being Oz initially—which is not exactly as expected—and then a return to home. But it’s a really great analogy for what many of us experience after going gluten free.
It takes a journey of learning and many twists and turns before we find our power to return “home”—i.e., feel comfortable, happy, and healthy living gluten free. Those magical ruby slippers were always there for you, whether you realized it or not and, hopefully, things will turn out far, far better than you could have possibly imagined!
Please also check out 11 Gluten-Free Recipes That Will Make You WANT To Eat Gluten Free.
Fatcat–Thanks so much, dear! 🙂
Traveling will never be the same. You can get hungry in an airport just from the aroma of Cinnabuns. Learn to bring snacks everywhere. The other dangerous place is hospitals. A dietitian who can’t tolerate gluten has been unable to teach her staff about gluten sensitivity. At one hospital an elderly woman with celiac disease was served cream of wheat and toast. She simply didn’t eat. I was once served a bowl of iceberg lettuce.
Thanks for the reminder! Great information.
You’re welcome, Shannon. Thank you! 🙂
Great list, Shirley! And thank you for the link love. I forgot I wrote that post. It’s an oldie, but a goodie. Also, thank you for featuring our book. That is much appreciated!
You are such a gem and a wealth of resources for the gluten-free community. Thank you for all you do. You truly help people “become their own gluten-free expert.”
PS: Have a wonderful weekend!
Thanks, Melissa. Gosh, you are so generous with your words here. I appreciate them very much! I really hope that I help folks become their own experts, because it’s the best route IMO. You’re welcome as far as the post mention (your list has stuck in my head, so I know it will help others!) and also the book mention. Your and Pete’s book just beats the pants off of so many others that are out there and recommended. I sincerely hope readers will add it to their resources because I know it will really help them! Hope you’ve had a great weekend, too!
Cheryl Harris says
what a great post, Shirley. I know I cringe when I hear many of the “facts” people learn along the way from health professionals.
Hi Cheryl–Thanks, dear. Those “facts” should be written in a book, which should then be burned, after which they’d never be uttered/printed again. A girl can dream. 😉
Absolutely true! I think I would add to my personal list that everyone with a food allergy, intolerance or celiac (with the exception of small children) is responsible for the items they choose to eat and the places they eat. Knowledge and the willingness to ask questions is what will keep you safe and healthy. Don’t expect anyone else to do it for you.
Hi Susan–First, I don’t think I’ve ever officially welcomed you to gfe, so welcome! 🙂 Thanks so much for adding your comment here. Yes, that’s a key point for sure.
On my personal list of “rules”:
It’s okay to be not okay. We can’t control everything. I am only human and I will screw up or allow someone else to screw up my day. It’s okay. It is not earth shattering. Learn from it and move on. Beating myself up while doing battle with gluten is doubly exhausting.
Sally–Thanks for sharing what you’ve learned with all of us. You’re right that a lot of time and energy is wasted this way. It’s a learning process for sure and none of us does it right from Day One.
Kristin @ Tastefully Gluten Free says
Shirley, I really enjoyed reading this post! I was a grieving mess when I was first diagnosed with celiac – reading this reminded me how far I’ve come in those 8 years. I completely agree with all of your points, especially #3. Being gluten free has made me more aware of what I put in my body, which really is a gift!
Hi Kristin–First, as this is your first comment here on gfe—welcome! 🙂 And thanks so much for your kind feedback and sharing your personal story with us all. Some say they don’t grieve at all because they’re so relieved to have an answer and move towards feeling better, but most individuals definitely do grieve even if they are also experiencing relief/gratitude. I was happy about getting my answer, but still overwhelmed and sad initially, with many more transitional feelings along the way. I am very happy now, especially about #3 like you. 😉 I’m also amazed at all the new foods and recipes I’ve experienced since going gluten free. It’s opened new horizons for me for sure!
Thank you so much for taking the time to leave this comment with your thoughts!
Loved reading this article Shirley! All of it is so true no matter where you are on your journey. Hope you are having a great summer!
Thanks on all, Carol. I appreciate validation from one who’s been through this journey. 🙂
You are so right, it is a shock when you are just starting out. I am really new to gluten free as it’s only been about a month now. Doctor also has me dairy free and soy free.
I am slowly finding recipes or alternatives to what I ate before, and am eating some new foods. I’m also allergic to fish and have acid reflux which means no tomato based dishes, and the doctor has eliminated lots of fruits and vegies for me, but I am hoping eventually he will let me have them again.
Anyway, I have a question. I clicked over to one of your links (the one about your gfe approach) and you talked about higher priced specialty gf items.
I was wondering what you meant by that? I have found myself buying gf pasta and gf breadcrumbs and gf flour, and I was wondering if that was what you meant?
The bread is a lot more expensive but I thought eventually I would try making my own. It just all seemed overwhelming at first and so I wasn’t quite ready to make it yet, lol!
momstheword–Hi there and welcome, Nan! I hope you’ll do better and better in making this transition. Many folks find out that acid reflux was all about gluten and not other foods. I was one of those folks. Hope you are, too! 🙂 It’s not unusual to have a number of foods taken out of the equation initially and doing so can help the gut heal. And then, with time, many can reintroduce foods and see how they do with them. Hopefully, that will happen with you and your diet will expand greatly in the near future!
I call anything that is gluten free and not just naturally gf (meat, fruit, veggies, etc.)—and is something that a gluten-full person would not typically buy—a gluten-free specialty item. So things like gluten-free flours, xanthan gum, gluten-free bread, gluten-free pizza, gluten-free cookies, etc. are gf specialty items. Plus the gf pasta and gf breadcrumbs you mentioned. I’m sure that you noticed how much more expensive they were than their gluten-full counterparts.
I think it’s smart to ease into things with gf living. Making gf bread can seem especially overwhelming for most people when they go gf people. Some decide they really don’t need bread after all and while they enjoy it as a treat occasionally, they neither want to make it nor eat it on a regular basis. I’m in that category myself. But if and when you want to experiment with baking your own gluten-free bread, you probably want to check out my gluten-free bread series–A Bountiful Bread Basket. It starts here with loaves that you bake in the oven and continues on with rolls and biscuits, loaves you make in the bread machine, etc. (The links to all the parts in the series to date are in that post.) If you have a craving for bread and are not ready for trying loaves, the rolls and biscuits are a great option.
Hope to visit your Sunday linky event some in the future. Best of luck on gluten-free and “more-free” living! 🙂
Thank you so much for answering my question! It’s funny that you mentioned bread, because today I asked my husband to carry our bread machine into the kitchen as I am thinking about trying some recipes.
Thank you for the links, I appreciate it. I guess I eat a lot of specialty items then, because I do love bread and pasta. Am also amazed that gluten is in so many things that I never realized before, such as cream of chicken soup!
I have found myself struggling a bit with what to make for meals for my family. Going gluten free for them, too, would be much more expensive if I try to make some of the meals I made before (i.e. beef stroganoff, etc.) by making them gluten free, although I could do it occasionally.
I am going to pop on back here some more as you are a great resource for me. I am also going to poke around as I am curious about what you eat and see if I can find some meal ideas! 😉
Thanks so much for all the kind words, dear! We all go through those initial days of being shocked at how many products gluten is in and thinking we can’t afford to all eat the same way, but by living gfe you really can all eat the same meals if you’d like. I can’t imagine making separate meals myself–both given the time factor and how I would be exposed to gluten again and again. It takes a shift in thinking, but you really can focus on naturally gf meals (with only a few gf specialty items here and there—like gf pasta) with your family eating gluten full “on the side” if that’s the route you all take. Take a look at my printable tip sheets under the Go Gluten Free tab. Here’s the link. You’ll find meal ideas and more there. Hope they help!
Thank you! I will check it out! 🙂
Great Info Shirley. Sharing with the world. Everyone needs to know!
Hi Michelle–I really appreciate you taking the time to stop by and comment—welcome! 🙂 And thank you so very much for the kind feedback and, most of all, for sharing!
Have a great weekend!
Keith Johnson says
I have been coliac 16 years and still find it difficult, I am tour coach driver a lot of hotels I have to stay in haven’t a clue.
Hi Keith–Thanks for taking the time to comment. It’s great to have you here at gfe. I think ongoing work travel with all the constraints that entails would definitely be the hardest. There are many establishments that don’t get providing gluten free and when you are have limited time to discuss your needs with them to make sure they can prepare a safe meal and can’t just get up and leave because you’re on a set route, that makes it really, really hard. My sympathies. I hope that the education on feeding the gluten-free public safely just gets better and better. I do believe that won’t happen until there’s an associated drug and celiac and non-celiac gluten sensitivity become well-known terms via drug commercials on television, magazine ads, etc. Crazy that it has to come to that, but I do believe that will be the tipping point.
Linda D. says
Yes. Yes. Yes. Yes. Yes.
Honestly, I think you and Johnna are as brilliant in the “food thought” arena as you are in the kitchen. And if that doesn’t make sense at this late hour, at least I have an excuse.
If I hadn’t been diagnosed with celiac disease, I would NEVER have put a second thought into what I’m eating. And, I wouldn’t have met some of the nicest people around. I chat and email with such a wide range of gluten free friends. Blows my mind sometimes.
Great post, Shirley!
Hi Linda–Thanks so much for taking the time to comment and offer your validation of my thoughts. Thanks also for being so generous with your words! I love Johnna’s food thought discussions. I tend to limit my topics more than she does, so not only do such posts of hers awe me in general, but her range of topics is pretty awesome. Honestly, she constantly amazes me! So I really appreciate you putting us in the same camp. 😉
Isn’t it so true on what we’d be eating if we hadn’t gone this route? Scary thought for sure. And I agree that the people I’ve met have been phenomenal! The funny thing is that I’ve also formed new, much stronger bonds with people I already knew when they also found out they needed to go gluten free. It’s all been so lovely really.
Thanks again, dear! xo,
Theresa Emery says
Thank you. This is the 1st article I have read after finding out my teenage son is allergic to wheat, soy, and a variety of fruits. (I’m hoping we don’t add more to the list!)We are on week 1 and I am trying not to overwhelm myself. #1 on your list is VERY encouraging!
Hi Theresa–Welcome to gfe and you’re welcome, of course! It’s really heartening to know that this post is helpful to you, especially #1. It’s most definitely true so take one day at a time and don’t get overwhelmed. Focus on all the things your son can eat, especially foods, products, recipes, etc. that are his favorites. Those mean so very much in the early days. You might also want to check out my Go Gluten Free section with printable tip sheets. You’ll have to tweak them a bit per your son’s additional needs right now, but you might find them really helpful as far as thinking differently in making this transition. Best of luck!
Audrey @ Gluten-Free Vegan Love says
Great tips, Shirley! One thing that helped me make an easier transition was to focus on finding and preparing foods I love, as opposed to being hung up on finding gluten-free substitutes for things (which often left me feeling disappointed). There are so many foods to be enjoyed out there and getting tunnel visioned on “what will I do to replace my gluten” or “why can’t I eat like everyone else” can really leave you feeling deprived when in reality I feel like since I’ve made healthier changes to my diet I feel a lot more interested in enjoying food, exploring tons of recipes, getting creative, and appreciating a much richer diet than I ever have.
Hi Audrey–Thanks! And all of what you’ve shared is so true. I started developing my gfe approach focusing on all the foods/recipes that I loved that were naturally gluten free. That’s sort of the subtext of #3 here. When you start looking at foods and ingredients, you start seeing how many of those that you love are already gluten free. And I’ve been amazed at how many new foods and dishes that I’ve tried and fallen in love with, which I would have never tried if I hadn’t gone gluten free. I’ve even got a post in draft on this topic. 😉 “Much richer diet” indeed, dear! 🙂
adrienne @ whole new mom says
I love the one about learning what’s in your food, Shirley. My husband and kids have commented that though it’s been hard to make the changes to our diets that we have done, it’s led us all to a much healthier place. Great post. Love the red slippers :)!
Thanks for taking the time to comment and sharing your perspective, Adrienne. It’s amazing to see how far we’ve come when we stop to take a look back!
Arleen Higgins says
I am a chronic pain sufferer, and was told maybe going gluten free might help me, but I have no clue how to even start!! Is there any list or book you offer to get me started??
Hi Arleen–Welcome to gfe. 🙂 I’m so very sorry to hear about your health issues. Living gluten free has helped many with such issues and sometimes giving up other inflammatory foods can help as well. Was your recommendation from a doctor? I really recommend that folks get tested for celiac before going gluten free. That’s because once one goes gluten free, the testing will no longer be accurate because the small intestine starts healing immediately once one goes gluten free and without damage found there, the test results will be negative. So I really recommend seeing if you can get the testing done first. Chronic pain can be a symptom of gluten issues for sure. Here’s a listing of other related symptoms/conditions. Take a look. You might see that you have other symptoms, which further makes the case for celiac testing. Print it out if you wish and put a check by all the symptoms you have and take it to your doctor and request to be tested for celiac. Last, even with a negative celiac test, one can have non-celiac gluten sensitivity, which can cause chronic pain and lots of other issues.
Now all that said, the answer to your question is that there are lots of books, but the content of many of these books can seem very overwhelming. I recommend a Kindle ebook called How to Be Gluten Free from my friend Linda, The Gluten-Free Homemaker. (You don’t have to have a Kindle to read Kindle ebooks. You can read them on your computer or smartphone as well.) You can also check out my 50 Foods You Can Eat Today listing. This listing follows my gluten free easily (gfe) approach because it focuses on real food that’s naturally gluten free, mainstream foods that are gluten free, and a few specialty items that are gluten free.
Gluten is the protein found in wheat, barley, rye, and also in oats via cross contamination wit the first three grains in the field and in processing plants. If you’re buying processed foods, you look for “gluten free” on the label. You also look for wheat in the ingredients label as well as barley (often stated as malted barley, barley malt, etc.). Rye is only in things like rye crackers and rye bread so just stay away from those. You have to stay away from anything with oats UNLESS the product says “gluten free.” Certified gluten-free oats are safe and gluten-free products that contain oats contain gluten-free oats per the FDA standards.
This post on Top 20 Things You Should Know About Gluten should also be helpful to you. All of these printable sheets come from my GFE Tip Sheets/Go Gluten Free page. You might find some other helpful info there, too.
Admittedly, this will all seem pretty confusing at first, but you’ll be surprised how quickly you learn “the language” of living gf. Again, focusing on real food that’s naturally gluten free first and foremost will make life so much simpler. Chances are many of your favorite foods and recipes are naturally gluten free or can easily be adapted to be gluten free.
Last, I hope you’ll get tested for celiac because it’s really helpful to know if you have celiac in regard to associated health issues/concerns and having a celiac diagnosis has helped many stay 100% gluten free. Being 100% gluten free is necessary for your health with either celiac or NCGS though.
Best of luck, dear. Please let me know if you have further questions. You can even email me here if needed.
This is such a great post and I always have to giggle a bit, remembering what I went through when I first went gluten free. Not only people trying to tell me it’s ok to”have just a little bit,” but also my own misconceptions (husband: dear, your chicken breast, steamed broccoli and brown rice make a fantastic meal, but honey, can we try something else?) so your blog was heavily read and studied and re-read (and still goes on) until I became more confident. You have always been there to virtually hold my hand through it all and giving me courage. Thanks Shirley, for helping so many people!
Shirley Braden says
Hi Angela–I’m always amazed how often comments fall through the cracks as far me replying to them. 🙁 Yikes! I appreciate you commenting and sharing a bit of your personal story here on gfe as well as your very generous feedback. I’m so happy I was able to help you so much during your early days of gf living!
Angela Sommers says
No problem about reply – you have your hands full enough as it is! You never need to worry about that with me 🙂 And I keep coming back to your blog and heavily rely on your recipes and guidelines, and pray that someday you might feel ready to put it all together in a book – I would stand in line to get it! While i love being able to go online and get what I need, power outages and going to foreign countries have taught me to not rely on the internet as the only source of information 😉
Donna Wendt says
Love your five comments . I have read labels for years . The former were for coloring and preseratives . Now it’s gluten ,corn and dairy . Yes only myself is held responsible for what I consume .
Shirley Braden says
Hi Donna–Thanks so much for commenting and your positive feedback on this post! I really do hope this post will help readers by offering some validation for their experiences and maybe even allow some readers to avoid some of the angst that all of us (or most of us) have gone through.
A great read Shirley. All very relatable but #1 especially. I have always believed in cooking with whole foods, and avoiding so called convenience foods. This definitely made things easier when I had to go gluten free.
Shirley Braden says
Thanks for taking the time to comment both here and on Facebook, Leslie. I really appreciate your generous feedback! 🙂 As I said on FB, that epiphany that cooking with whole foods is going to make your GF life so much healthier, easier, and even less expensive is such a powerful one, right? I know that many resist it because they want the convenience of products but I hope that they eventually come to the conclusion that I did, that eating real food and recipes made from it is really just as easy most of the time. That reminds me of a post that I have put on the backburner but should definitely move up in the queue. 😉
Thanks again, Leslie! I hope everyone reading will check out your delicious real food recipes!
Shirley, We are simpatico! Thanks for tagging my page ♥
Shirley Braden says
Indeed! And my pleasure, of course, Leslie! I used to have URLs allowed with comments but I ended up getting so much spam as a result. Removing the URL field has helped a lot.