Dana blogs at Home*School*Home (update: and now also at Gluten Free: What Can I Eat?). She is a medical trancriptionist and mom of 3 who lives in Kentucky. She has been gluten free for 8 months and feels like a brand new person! Read the rest of her story to find about her personal journey to being gluten free and finding this “brand new person” within herself.
I was in college when I started feeling overwhelmingly exhausted and aching all over. I began to go back to the dorm to take naps between classes. I went to the doctor back then but really didn’t get any answers. I just coped with it the best I could. I had to take a nap every day. I’d get up in the morning and be okay for a while but by 2:00-3:00 p.m. each day, I’d be exhausted, aching all over with a foggy feeling in my head and pretty much always a headache to go with it. I almost constantly had to go to the bathroom to urinate and would feel pain and pressure in my bladder even when I didn’t have to go. My joints would ache. Over the years I was diagnosed with interstitial cystitis, fibromyalgia, irritable bowel syndrome, colitis, depression, Raynaud’s phenomenon, bursitis (of all my joints at the same time!) restless legs, anemia and chronic fatigue syndrome. At one point I was so anemic that my hemoglobin was 8 when the normal range is 12-14 and I was dizzy and weak and lightheaded. I have not, to this day, been diagnosed with celiac disease because I decided to skip testing and just try the diet. I kind of regret that but I don’t want to go back on gluten to be tested.
Despite feeling exhausted all the time, I managed to have a life. I got married and had 3 kids. I continued to work and have homeschooled my kids. I’m fortunate that my husband and kids were very patient and tolerant of my need to nap. I also worked at home as a medical transcriptionist so my job was flexible. Sometimes I would be so exhausted; I would have to lie down during my work shift! If I couldn’t nap for some reason, I had to take Tylenol and caffeine and just try to deal with it, but it wasn’t easy. I planned everything around getting to sleep in the afternoon. I homeschooled the kids in the morning, slept in the afternoon, worked 4 hours in the evening and then went to bed absolutely exhausted.
After more than 20 years of feeling exhausted and in pain pretty much all the time, I happened upon an article about a link between fibromyalgia and gluten intolerance. I didn’t know if I believed it, but I felt that it might be worth a try. I started doing internet searches for gluten. I started reading everything that I could about gluten, the symptoms and the diet. Now I have always been overweight and I have never been able to stay on a diet. Most of my diet efforts in the past would start on Monday morning and be over by Monday afternoon, but I kept reading. I started thinking about what kinds of things I could eat and what I’d need to stop eating. I found the Gluten Free Easily site in the first few weeks. I was comforted to know that I could make foods that would be gluten free and would taste good. This was in November of last year and I was thrilled to read the turkey and surprise stuffing recipes. I felt like I could really do this diet, and maybe not feel deprived.
I jumped in. I messed up a few times. One time I was at McDonald’s and had already ordered when my daughter said “Mom, doesn’t that have gluten in it?” There were other times when I forgot to read labels or just thought I would risk it, but finally, I managed to stay gluten free for one day, then two, then after a week had elapsed, I realized that I was already feeling a lot better. I decided to stay with it and despite my dismal dieting history, I was able to stay with it. It was easier to stay on this diet than any other because the reward of feeling better was so great. This past February we were on vacation and I decided just to go ahead and have a restaurant meal that contained bread and gravy because it would be worth it and hey, it was vacation. That night in the hotel I had a horrible time of it and the next day, on the four hour drive home, my legs ached so bad that I couldn’t keep them still. It was a miserable trip and so not worth it.
Over the past few months I’ve done more cooking out of necessity because most prepared foods contain gluten, but hey, that’s a healthy new habit. I’ve learned to make most of the meals for my family gluten free. Occasionally, I will cook something for them that I can’t eat, so that they can have things the way they used to be, but some of my new recipes have been very popular.
Now I’ve been gluten free for 8 months and my life has been transformed. I only take a nap occasionally if I’ve missed out on sleep the night before and now my naps last 1/2 an hour or so, instead of 2 or 3 hours like they used to. My legs don’t ache constantly. I’m not in a brain fog. I no longer have a headache every day. I don’t have fibromyalgia tender spots all over my body. My joints, with the occasional exception of my knees which have been sprained in the past, don’t hurt anymore. I had a revelation a couple of weeks ago when I went on a visit to a historical fort with a friend and realized that I was walking easily up the third of 4 flights of stairs and was having no joint pain at all, no weakness and no fatigue.
Yesterday, I had a day that would have been impossible in my pre-gluten-free life. I cleaned my house all morning, I went shopping all afternoon with my daughter and ran a bunch of errands, then came home and did a workout video from Dancing with the Stars and still was not particularly tired. I was able to get some other things done in the evening. In my past life, cleaning the house would have worn me out, I would have had to schedule the shopping on a completely different day and kept the errands limited to maybe 2 at most because “a bunch of errands” would have completely exhausted me and there is no way I could’ve done that workout video.
Without gluten, I feel like a new person, strong and pain free. It’s wonderful. I’m so glad that the ‘cure’ for feeling awful all the time is something so simple. It may not seem simple when you are trying to figure out a restaurant menu or a food or beauty product label, but when you think about it, really, it is. I don’t have to undergo chemotherapy or radiation, I don’t have to give myself daily shots, I don’t have to be on a lot of expensive medications and if I follow the Gluten Free Easily philosophy of just mainly eating naturally gluten free foods, it’s a snap. Hey, there are 6 food groups; meat, vegetables, fruits, milk, meat and beans and oils and I can eat 5 of them! I only have to be careful with that 1 group, grains. Easy. Peasy.
Shirley, here: Thanks so very much to Dana for sharing her story! Dana first commented here last fall and just a few times afterwards. I visited her homeschooling blog a short while later and sent her an encouraging comment, telling her that seeing results could take time. I shared my own experience that after months of being gluten free, one day I suddenly realized that I was running up and down stairs with ease and no pain. Out of the blue, Dana popped in here on gfe recently to say: “I just wanted to let you know that I had that moment, the one where I was walking up the stairs, easily, quickly and realized that I didn’t HURT! I’ve been gluten free for 8 months.” Incredibly moved by Dana’s comment and thrilled at her success, I asked her to share her story. I’m so grateful that she did. I hope you’ve appreciated it as well and will share it with others who may be struggling with health issues. The negative impact of gluten can be far reaching, but the gluten-free diet can provide relief to many.
Not just gf, but gfe!
Celiacs in the House says
Oh, Dana. I so know about homeschooling in the morning and those afternoon naps and the aches and pains. Happy to hear you found the gluten-free diet and Shirley and that you are pain free and full of energy. It’s amazing the array of diagnoses with all the symptoms we get with celiac and gluten intolerance and how quickly those symptoms go away when we avoid gluten. Thanks for sharing your story.
That’s a great story to share Dana (and Shirley). I bet so many people will recognize something familiar. It’s so important to share our stories. Thanks for doing so. I’m so happy for you Dana.
Heidi @adventuresofaglutenfreemom.com says
I am so so happy for you!! I too can relate on “that moment” when, after months of being gluten-free you suddenly realize that you can’t recall ever feeling so…GREAT!
To have energy and focus, to lack pain, to sleep like a baby (primarily at night, LOL!), and most importantly:
To be active and p.r.e.s.e.n.t. in your life.
I’m so glad you found Shirley, she’s so genuine and caring, she’s kind of like everyone’s adopted “gluten-free mom” 😉
It’s wonderful to hear from others who understand what this feels like! I don’t know anyone who has experienced this in real life.
Wow, I could have written most of the beginning of your story, but I haven’t yet found a solution. I’ve wondered if I should just try going gluten free, but never seem to get around to it since I doubted if it would make a difference. Thanks so much for sharing your story!
Kim @ Cook It Allergy Free says
Dana, thank you so much for sharing this story. It seems that so many people, after a life-long struggle of health issues, have an “AHA” moment after they have been gluten-free for a while. I can certainly say my husband did!!
I am so glad that you are on the path to healing. And I must give you so much credit to homeschooling all of your children!! How wonderful!
Jean Layton says
Dana and Shirley,
Thank you so much for sharing Dana’s story and triumph. I have patients choose to do the experiential “testing” for gluten intolerance frequently, especially those folks without health insurance.
The improvements in their lives are all the convincing they need.
So glad that Dana can now participate fully in her life.
Dana and Shirley,
I’m a little ashamed to admit that I haven’t checked out the GFE website for a while. For some reason, I was drawn to clicking the link today. Now I know why. Dana is ME! I had the majority of the same symptoms and issues and then went through testing for Celiac Disease last year. In November, it was confirmed and I’ve also been gluten-free for 8 months. I have never desired to cheat, because I know how bad I felt when it was an accidental thing. And I can’t remember ever feeling better. Last year, I was on the verge of hospitalization – just a year later, I’m participating in L.I.F.E. again! Thanks for sharing this story!
Jennifer R. says
Great testimony, Dana. I can relate very much, as I was an afternoon napper too. Can’t remember when they went away, but it was a gradual thing for me too (the improvement after going gluten free).
Sarah B: Try it, you won’t regret it. Use Shirley’s recipes and remember, you can eat Snickers!
Kim – Thanks! Homeschooling is a team effort around here, my husband does a bunch of it too so I can’t take all the credit.
Jean: I’m also glad I can partipate fully in my life. It’s fun getting to do things with my kids.
Stephanie Mckenzie says
Thank you Dana, for sharing your story! I see so much of myself in what you were going thru, I am now making better choices and staying off the gluten, it just isn’t worth it anymore to feel horrible over some brownies or cake or bread that contains the gluten and much worse. I know that I don’t have the gluten allergy since I have been tested and had a biopsy done of my small intestines, but for some reason I just feel so much better off of it, could be I’m just sensitive to it, I believe all people would most likely feel better getting it out of their diet!
Thanks Dana for sharing! I can relate to your pre-gluten-free symptoms, and the relief the diet has given! I recently “tested” gluten again (I feel foolish admitting this), as I was never clinically diagnosed either, and started to wonder with lingering issues if I really had a problem with gluten (or was it something else). All those symptoms came rushing back – especially the one you discuss about your legs hurting so bad you have to keep moving them! Gluten is SO not worth it! 🙂 Good to hear you’re doing so well.
Dana we share very similar stories. I have had the tired/pain issues too, needing a nap everyday while raising three kids. I homeschooled for a year and a half too, but quit because of sheer exhaustion. I have many of the classic symptoms hypothyroidism, Brain fog, anemia, losing weight, IBS, chronic headaches, muscle pain….now I have been gluten free (minus a couples if mistakes) for 10 months, and I am nearly symtom free.
It is amazing how nice it is to feel like a normal human being again. I tried to delude myself into thinking I was mistaken about being gluten intolerant…Did I ever pay the price! I never want to feel that crappy on purpose again! Thanks for sharing your story.
Lovely testimonial for living gluten free! I am on the Gut and Psychology Syndrome (GAPS) Diet for eight months which is a gluten free diet and I can relate to all that napping which is no longer necessary! I am feeling stronger each day and to tell you the truth I’m a little scared to even try gluten again for fear of how it would make me feel. Thanks for sharing your story.
Thanks for all of the positive feedback!
I’d like to add my thanks to Dana’s to all of you who have taken the time to comment with kind words of appreciation and encouragement to Dana, as well as to share stories of your own. As I’ve said before, it’s the personal stories that are most often inspiring others with gluten-related illnesses and symptoms to get tested and/or go gluten free. Please share Dana’s story and your own with others when they experience symptoms that could be gluten related. (I know that’s not always easily done, so be prepared to “play it by ear” on how to handle that sharing, and be willing to back off at times when needed.) If you’re a reader who has been skeptical about the effectiveness of the gluten-free diet, please seriously consider all that’s been shared in Dana’s post and also in the responses to this post.
Thanks so much to Dana and all of you!
Great story! Thank you Dana for sharing it and NO, you are not alone on this gluten-free journey. There are lots of us out here who are on the same path (although I skipped the home-schooling part). =) Glad you’re feeling healthy again.
Another great post, Shirley. See you soon!
Melissa–I can’t believe we’ve met in person now! It’s been so delightful! 🙂
Dana’s story is phenomenal I think. So many folks have experienced such a turnaround, and hopefully, many more will after they read Dana’s story. Personal stories such as these can really open eyes!
Wow, your story is so much like my own! Diagnosed with fibromyalgia in college because of everything you described and then some… and it wasn’t until I started changing my diet that any actual healing began to take place. Thanks so much for sharing, and I’m glad to hear you’re feeling better these days 😉
FYI: I’m doing my first ever gluten-free giveaway… Pamela’s Products! Stop by my blog if you feel like entering!
Hi saxifrage–Thanks so much for taking the time to comment and share the similarities in your own story. I truly believe that we can’t tell these stories enough.
Hope your giveaway is going well. I know a lot of folks really like Pamela’s products, so hopefully, you got some entries from gfe readers. 🙂
What a beautiful & lovely post, dear Shirley!!
Hey Sophie–Thanks so much. I was so grateful that Dana shared her story with all of us. It is truly awe inspiring, isn’t it?
Thanks everyone for the positive feedback on my story. Now wish me luck as I try and convince my mom she should go gluten free!
Hi Dana–Thanks again for sharing your story! I wish you continued good health and luck on everything. As far as family members, I think you are doing the best thing … leading by example. That, and gentle education, can often be just what someone else needs to find out if they have gluten issues/go gluten free.
did this help your interisital cystits?
Hi Mel–Looks like you are new to gfe–welcome! I’m glad Dana shared her own experience with you. I, too, was diagnosed with IC and saw it largely vanish. Occasionally, I’ll have a bout and wonder if it gluten related. I do know that too much sugar and sodas can also cause mine to resurface, too. But eliminating gluten pretty stopped the weekly trips to the urologist.
All the best to you,
It has helped the IC mostly, but every now and then I will have some IC symptoms. I don’t know if I have another trigger food or have accidently ingested some gluten?