Why the Gluten Free Diet is not working.

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I tried the Gluten Free diet and it didn't work. I felt good for a while but then I started to feel bad again. It's too hard to stick to it. I hate feeling like an outcast not being able to eat what everyone else is eating. It's too expensive. My Doctor said I don't have Celiac so why bother?

People will give excuse after excuse after excuse as to why the GF diet is NOT right for them, and the reality is, they are all just that - EXCUSES. I've used them all myself, or at least thought them to myself at one time or another. I started my gluten free journey back in 2007. I admit that it's been a rocky one. I've been on and off the diet many times, noting all of the "reasons" above. I can't believe it's been almost four years since I discovered Celiac disease in my search for answers as to why I've been sick for most of my life. I should be in tip top shape and feeling the best I've ever felt, right? Well, this has been the best year so far, so that's a plus. I'm getting there, slowly but surely.

Friends and family know that I haven't been 100% faithful to the diet over the years. I didn't talk too much about that on this blog because I didn't want to disappoint. Usually that meant I wasn't blogging much during those times because I didn't have anything to write about. I am happy to say that I have really stepped it up. I had to. I was getting sick again. I have officially been off medication for a year now. Wait, let me say that again. I HAVE OFFICIALLY BEEN OFF MEDICATION FOR A YEAR. Yaaaahoooooooooo!!

Early this year I was feeling so good and confident and then I started my new job. Which has a full service cafeteria. And new co-workers that didn't know anything about my issues. I slid down the slippery slope of a small cheat here and a tiny slip there... and then it happened. The rash. I have not had a rash since 2008. This was a major wake up call. My stomach was better than ever but still not perfect. I started to feel the brain fog, the headaches, the MAJOR fatigue. I was so tired that I could barely function and I'd immediately crawl into my PJs after work. The funny part is, I didn't realize how bad it had gotten because it was such a slow progression. Finally I woke up one day and realized that if I didn't stop it right then, I'd wake up someday in a recovery room after having a section of my intestines removed. Or worse.

What prompted this post, the title of this post, and the opening paragraph, is that even when I'm completely ON the diet, I've realized that I'm actually still not 100% clean. So when I get the rash or the headache or the brain fuzz and can't figure out why, I have to really look carefully at what I've been eating. An example of this - the other day I grabbed a fry off of someone else's plate at lunch. I have been eating the fries knowing that they are fried in a shared fryer. This is something I have always done and used the "Well I don't actually have Celiac" excuse. I'm not super sensitive to it so I can eat things that are fried in a shared fryer, right? Right? I never ever gave this a second thought until that one fry that I grabbed the other day. Shortly after eating the fry, another co-worker commented that the fries tasted like egg rolls. That particular day was Chinese Food day in the cafe and they had fried the egg rolls in the same fryers that the fries are cooked in. It was like someone poured a bucket of cold water over my head. HELLO! Wake up call from your intestines!

This little incident made me completely re-think my gluten free strategy. Sure when I'm gluten free I feel soooo much better but I think that I could feel even BETTER if I stopped ignoring those "little things" like crumbs in the toaster and shared fryers and foods that are manufactured on shared equipment. It also made me think twice about all of those people out there that cheat like me and then claim that the diet doesn't work.

You must stick to the diet 100% in order for it to truly work. Even if you don't have outward symptoms, the damage is being done and eventually you WILL feel it. If you are sticking to the diet 100% and feel that it is still not working, perhaps there's another intolerance at work. Many foods are not our friends! You just have to keep at it. Proper diet heals. I promise. I am living, breathing, un-constipated proof. :)


Jenn Sutherland said…
Bravo, Jen, for recommitting to "the life." I think we've all had our slips and slides, before finally deciding that 100% vigilence is the only way to be healthy - and to know that we will remain healthy for a long time. Yes, I do still get tired of bringing my own food to restaurants and watching friends eat food cook FOR them, but I don't go home feeling lousy from eating things I shouldn't, and I have the energy to hang out with my friends more often now, too. I'm so glad you're back to blogging. I missed you!
Carrie said…
I want to share this post with about a million more people! It's so true! I had a similar up & down journey the first few years on the diet myself. A little here, a little there, and then a completely backslide... and then I felt awful. I had an awakening, a cold bucket of water moment too and ever since then I've been strictly gluten & soy free. This is a great post I'm so glad you wrote it!
Rella said…
Jen, thank you for sharing this. I think a lot of people, including myself, who have dietary restrictions can really relate to a lot of this.

Re: feeling like an outcast, I totally know what you mean. I used to cheat a lot more on my gf diet, but lately I've just gotten so much more sensitive that I can't! I guess that's a good thing...but it is incredibly hard. More power to all of us who are able to do it!
jennifer said…
yes! yes! and yes! i am right there with you and agree with everything you just said. it's so completely true how easily the little rationalizations become habit. a little nibble here and some cheating there. i've been gluten-free for almost 10 years now and am finally FINALLY at a place where i have replaced the desire to just feel good with giving in to those temptations. it just isn't worth it. feeling good is so very very worth it though! thanks so much for your post. so glad to have found you (via lemongingergirl)
Anonymous said…
I've been down that road as well. Since we thought the celiac genes were only from my husband's side of the family and that's where our kids got it, I could rationalize that my rheumatoid arthritis was helped by being GF. But I cheated and then I decided to do the CeliacID test and when the results came back very high risk for celiac, I realized my RA was celiac and being GF was not a part time thing. There is a denial and a psychological component to gluten intolerance and celiac and the denial of healthcare professionals of the high incidence just helps us cheat. It does take a bucket of cold water moment and mine was when I read that genetic report. I have been GF for almost two years now--no cheating and only a few accidental glutenings as I try to live and travel normally. Those accidents have made me even more vigilant. Bravo for being honest and coming clean. I think sharing that helps others to quit the cheating and stay GF and to see the little crumbs and stolen french fries are just as dangerous as a slice of bread or a plate of real pasta.
serenatlee said…
Thank you for sharing your experience! It is comforting to hear that I'm not alone in my own struggles to "eat clean".
One thing I'd like to add to your message of 100% commitment to Gluten Free: oftentimes there is more than one thing going on!
When the small intestine gets damaged by gluten, its damaged. This makes it ineffective at absorbing nutrients into the body. Also, lactase, the enzyme needed to process lactose, or milk sugar, is in the small intestinal villi. That is why its often more than one food that is triggering our reactions.
I've experimented with this myself and have been adding and subtracting foods to find the right equation for my body. I'd look into cutting dairy and refined sugar. That seems to have worked for me, I think there is still more going on. Still experimenting on myself! :) I'll keep you posted!
Good luck and thank you for your honesty and presence.
Thank you so much for sharing these struggles...because I think we all struggle like this at some point or other. It's so hard to grasp how serious the problem is when the symptoms are often delayed. I cooked for my mother-in-law's newly discovered celiac disease for 3 years before I was diagnosed. My first reaction: "That's my mother-in-law's problem, not MINE!" Even with having learned so much about the disease through caring for her, I still denied it in me at first. Such major lifestyle changes are necessary that it's hard at first...but worth it in the long run.
I also discovered my problem in 2007. Next month will be 4 years. It has been an up and down journey for me also. I thought that I had healed the problem, especially during two pregnancies. I got the sickest I have ever been over this last winter. I was in the hospital 6 times because of hypertension with no being able to figure out why. I was tested for celiac when I was pregnant, and it came out negative. It was bitter-sweet. I don't want to be diagnosed with another, but it would have given me a solid, "YEP, you were right, that's exactly what's wrong with you."

I get the rash on my abdomen, and when it gets bad, I get the rash on the outside of my breasts. It makes me so emotional like being pregnant. I don't realize it til after the fact. AND I don't EVER eat anything with gluten in it. I haven't cheated AT ALL. It is only ever by cross contamination. I even have my own toaster. I don't go out to eat anymore expect a grilled chicken garden salad from chic-fil-a and I have found that was even giving me a problem. I HATE it. It is so challenging. I can't eat anything from Frito-Lay at all. I used to want to travel, but I have the hardest time eating and traveling. The only restaurant I have found that I can eat at is Outback, and who can afford that too often?

It is nice to hear someone having the same inner-talk challenges. I get BAD migraines where I actually throw up. I get the rash, extreme emotional response, now I get the irritable bowl part, with such pressure that I throw up at the same time. This is only from getting cross contaminated. That is so bad. Just a CRUMB, can set me off. I so badly want to eat some oatmeal, but I can't even do gluten free oatmeal.

Thanks for blogging your challenge, it feels so good to see others having the same problem.
Ina said…
This is such a good post! It took me years to realize I was getting cross contamination! With our kids grown now, my kitchen is completely gluten free, right down to a new toaster. The difference has been astounding! Like "happiness is where it is" said, only a crumb can do horrendous damage..it has to be gluten free all the way, gluten free for life! Thanks for sharing this post, Ina
Pure2raw Twins said…
I am glad that you are finding your way again and on the path to feeling better :) Cross contamination can play a factor for many and sad that most people do not realize that. Great post girl! I think once people really go 100% gluten free they will see the changes like you did!!
Gluten free life really is not that bad... well to me at least :) hugs
Jen said…
Thank you all SO MUCH for your comments! It's definitely a major journey when you are changing your diet in such a huge way but it's a lot easier to do with such an awesome support system.

A note to those who mentioned it - I am also dairy free which may not be obvious from some posts. Dairy is a big problem for me. And sugar too. It's been a long process but I'm definitely figuring it out and happy to be STICKING TO IT from now on!!!
Caprices said…
I've been reading your blog and enjoying how much enthusiasm you bring to it. I've been diagnosed with Crohn's for a year now, and I'm considering some drastic diet changes now that my meds aren't cutting it. I can't help but be a little skeptical though--I mean, I believe that diet does help for the people who share their success stories, but have you gotten any feel from your own experiences of how common those successes really are? I just want to have some idea of how high to set my expectations :)
Jen said…
Caprices, I'm so glad you left a comment. I find more and more people with Crohn's that are successfully using diet as a tool of healing every day. It's tough because most doctors don't support dietary intervention as a means of healing this disease, so many people never try and continue to suffer. If you want to try a diet that I've seen work time and time again for Crohn's and Ulcerative Colitis, I recommend buying the book Breaking the Vicious Cycle by Elaine Gottshall. The specific carbohydrate diet is more restrictive than a basic gluten and dairy free diet that I follow, but I know many people that have amazing healing stories. Yes there are people that say it doesn't work, but I honestly believe that if you are not committed 100% to whatever dietary intervention you choose, it will not work. Can I say with confidence that ALL people with CD or UC can be totally healed with diet? No I cannot. What I can say is that it WILL make a positive difference. Absolutely for sure.

You have nothing to lose, eating healthier will only help, not hurt you. If you would like to talk in more detail, please feel free to email me directly at jen at alifeofsugarandspice dot com.


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