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A Celiac Following A GF Diet for 4 Years but Still Having a Series of Symptoms

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olivia627
olivia627

Hello All,

I am a 19 year old who was diagnosed with celiacs disease around 9 years ago, but I did not follow a strict gluten free diet until about 4 years ago when I truly understood the diagnosis. I've been to two nutritionalists and two GIs. Three of them could not pinpoint why I was still having stomach and other issues. One threw out IBS as the only possible diagnosis, so now I have turned to the internet.

I've had bloodwork done, which shows nothing but the fact that I am maintaining "normal" levels of something that is monitored in the bloodwork for celiacs (which the GI explained meant there was maybe some occasionally cross contamination even though I was following a gluten free diet). I would consider myself a fairly healthy eater and up until college I cooked for myself frequently, and have had consistent symptoms for over three years whether I cook all my own food for weeks at a time or not.  I've tried eliminating oats no help. I've tried dairy which also did not help. Corn seems to trigger symptoms, but I do not eat it nearly enough to have constant symptoms. 

My symptoms include bloating and cramps that alternates with diarrhea which tend to be the most significant symptoms. I have mild joint pain and what is apparently folluculitis on my forehead that has been there for years (and from a quick google search can be related to gastrointestinal issues). Post nasal drip seems to be another symptom, and the biggest one to me personally is chronic fatigue. I could sleep ten hours a night and still nap the next day. In the summer I would consistently sleep 9 hours each night and wake up not feeling refreshed and ready to take a nap by 5pm. I fall asleep everytime I get in a moving vehicle that I am not operating and find myself falling asleep in class sometimes. The internet seems to have a wide range of ideas for what my issue could be. I've seen everything from occasional cross contamination causing all these constant symptoms to IBS to hormone imbalances to food intolerances. Has anyone else experienced anything like this as a celiac? I've thought about food intolerance testing, but it's extremely expensive and not a very accurate proccess. I really can't afford to go to another specialist to arrive at yet another dead end. 

2 likes, 3 replies

3 Replies

  • lynda01728
    lynda01728 olivia627

    Posted

    Hi Olivia,

    So sorry to hear how much you are suffering and I really do empathise. I was finally diagnosed as Coeliac two and a half years ago. Although I did improve imensley after giving up gluten I continued with many of the symptoms you mention. The answer for me was a FODMAP diet and I urge you to investigate this. It is very restrictive initially and I personally have had to stick to many of the restrictions but it is worth it. I felt so miserable and uncomfortable so much of the time and at last I don't have a bloated painful stomach every eveing. It really is about finding out for yourself what your body can cope with but one thing is for sure and that is never ever let any gluten anywhere near you.

    Good luck and ver best wishes.......it sucks.....but you are not alone.

    Lyn smile  

    • olivia627
      olivia627 lynda01728

      Posted

      Thank you so much! The GI who suggested IBS recommended FODMAP, but I saw such a variety of restrictions online I didn't know which was accurate. Do you have one you have followed? Also how long did you go before reintroduction?

  • lynda01728
    lynda01728 olivia627

    Posted

    Hi Olivia,

    You should have been referred to a dietician and if you haven't then ask to be. S/he should then be able to advise and guide you through FODMAP. 

    The elimination of all high FODMAP food groups are for 12 weeks and then foods are gradually reintroduced one at a time to find which foods are totally intollerable and those which can be tollerated in moderation. For example I ate mushrooms almost every day before FODMAPS.......my body clearly hates them and I never touch them now. It is quite complicated to get your head around it at first but once you do it makes such a difference. It's all about how foods are broken down into sugars and it is very much tril and error until you get it right.

    I eat a very natural diet of mainly fish and vegetables. I do not tollerate carbs very well and therfore eat only very small amounts. Every Coeliac is different....it really is the most bizarre and misunderstood disease and because there is no monry to be made out of us (pharmaceutical industry-drugs)we are largely ignored. 

    You can get a full FODMAP food list on line but it would be helpful to have the guidance and support of a dietician.

    On a positive note....you are young......your body can be saved.......I'm 55 and mine has been wrecked by misdiagnosis for years.

    Good luck

    Lyn  smile

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