Bewildered And Bothered

[sheelbee]

Hello..I am new to this forum, and hoping that someone can offer me some advice.

I stopped eating wheat about ten years ago, and my health has improved enormously. I still eat gluten in some products, but I generally avoid it because many products that contain gluten also contain wheat. I have been presuming that I am wheat intolerant rather than being a coeliac, because I am basically fairly well without cutting out all gluten. I do still get diarrhoea and stomach cramps quite easily which I have attributed to an irritable bowel.

I was talking to a medico friend today who advised that it was very important to get a definite diagnosis of whether I have coeliac disease or not, due to the link to lymphoma. However I presume this means having to eat gluten every day? How long would I have to eat it for before getting tests? I am terrified at the thought of eating wheat products on a daily basis for any length of time because they make me feel so sick, so perhaps it would be wiser just to keep going as I am, eating gluten in small quantities.

I did have a blood test last year for Coeliac which came back negative but I had been wheat free for years (the doctor I saw didn't advise me to eat gluten before the test) so I don't think it was reliable.

Thanks for any help.

[PeggyV]

According to what people say on this site sometimes you have to eat wheat for as long as 2 months to get an accurate test! Then it might not be accurate, depending on if the biopsy the part that has damage! I am like you, I had major symptoms I attributed to IBS. I went gluten free, and my IBS symptoms only return when I have eaten questionable things or eat out. I wondered if maybe I was just wheat intolerant too, but sounds like if you are still having IBS symptoms, and you consume other gluten, they might go away if you stop....

If you do have celiacs and you continue consuming gluten, you could be hurting yourself, so maybe you should get the test. I decided I would stay gluten free for life, so I am not going to bother...

[Guest cassidy]

If you still get stomach and intestinal issues easily, then you are probably still eating something that you shouldn't. I went on a low carb diet a few years ago before I knew about celiac and I felt much better, probably because I was eating much less gluten.

If your blood test was negative years ago, then any testing you have now would likely be negative especially if you have only been consuming small amounts of gluten. The blood tests are only 50% accurate and can tell you that you have celiac, but they can't tell you if you don't.

My recommendation is to go gluten-free for a month and see if your intestinal issues totally resolve. Since you don't eat wheat it probably won't be that hard.

I would think that you have a problem with gluten because people without food intolerances do not get D often at all and irritable bowel is often a catch all when they don't know what is wrong.

[ravenwoodglass]

"My recommendation is to go gluten-free for a month and see if your intestinal issues totally resolve. Since you don't eat wheat it probably won't be that hard.

I would think that you have a problem with gluten because people without food intolerances do not get D often at all and irritable bowel is often a catch all when they don't know what is wrong. "

Hi and welcome to the board. I second this big time. Sometimes the blood tests are falsely negative even with full blown disease. In addition if it does show positive then you will have to be consuming large amounts for a couple months so they can do their biopsy to 'confirm'. Then if it does confirm you may have problems with insurance issues, not definate but some have.

I know some people have a strong desire for a definate yes or no from a doctor and there is nothing wrong with that. But there is nothing wrong with letting your body tell you either. Whichever way you go I hope you get relief soon.

[CarlaB]

To me, IBS is a description of symptoms, but the docs just don't know the cause. If you're still having stomach trouble while wheat-free, I'd switch to completely gluten-free. I originally thought I was only intolerant to wheat, too.

I would not eat the gluten every day for the testing. The solution to being celiac is going gluten-free. If you're going to go gluten-free anyway, it does not matter if you're celiac or gluten intolerant as you are already doing what celiacs do -- avoiding gluten.

Plus, the tendency for a celiac to get lymphoma is a very good reason to NOT eat gluten for the months you would have to eat it for testing.