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Possible Celiac?


fed up

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fed up Newbie

I am so lost.....

I am a female, who is 30 years old, who has been suffering with GI s/s for about 10 years. Maybe even longer. I have been to numerous doctors, who keep giving me the run around. I can not take it anymore. I was diagnosed with Polycystic Ovarian disease at the age of 18, and was told to go on a low carb, high fiber, high protien diet. So I did, I lost weight like crazy, but the down fall is....the GI problems. Since then I have been diagnosed with IBS, and I had my gallbladder taken out a little over a year ago, only for the problems to still be there. I have problems with stools going both ways, severe bloating(to the point were I really look 9 months pregnany), severe abdominal pain, cramping, joint and muscle pain, N&V, headaches, fatigue,heart palpitations, infertility, and miscarriage. This past week I was trying to comply with my low carb, high fiber diet, but every time I consumed the DOUBLE fiber bread that I bought, I eneded up in bed, in so much pain I was not able to walk, or move, or anything. I had never felt pain like that before. Doing my own research, I can only think that maybe this might be what it is (Celiacs Disease). Im not really sure as to were to go from here. I started a gluten free diet today, and can already feel a difference. Tonight was the first time in years that I was able to eat, and the bloating is hardly there. I know it will probably take time for all the s/s to go away, but I am excited for this so far. I guess my first question would be, do you think maybe this is what I am suffering from? (from the s/s I shared), and my next question would be, doing my research on gluten free products, i came across a list of "hidden gluten" to look for in products. And these "hidden gluten" names were listed on the ingredients that are supposed to be "gluten free" (thats what the labels said). For example: Progresso soup, says they are gluten free, but they contain citric acid, which is listed under my list of "hidden gluten". So what do you really go by? Do I trust the label that says gluten free? I am so confused!!!! I really want to try this life style change to see if I would benefit from it, and get my life back, but I still would like to stay on my high protein diet, due to my insulin resisitance. Please help!


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Skylark Collaborator

Hold on! First, keep eating gluten and go to your doctor to get tested. This could be celiac, and tests for celiac disease do not work if you are on a gluten-free diet. With your other health problems, you really need to know.

It's important for you to know for sure, because gluten-free products tend to have a higher glycemic index than whole wheat so they're not good for insulin resistance. Once you've gotten the blood tests and you and your doctor have discussed an endoscopy, then you can think about trying the diet.

As far as "hidden gluten" if your list contains citric acid, it's bogus. There is a lot of old and inaccurate information floating around about gluten in foods. Start with the lists here at Open Original Shared Link Most major brands are very good about disclosing ingredients like food starches or vegetable protein that is derived from wheat. The Progresso gluten-free soups are fine.

ravenwoodglass Mentor

I second what Skylark told you. Get tested now before you go gluten free. There are some of us that are false negative with testing so after the testing is finished do give the diet a good strict try no matter what the results.

It does sound like your in the right place but don't go gluten free until after your tests are done.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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