Not Sure If It's Coeliac Or Not...

[tiggy:)]

I have never had any symptoms of coeliac disease, have never felt ill from eating gluten, and have never had any gastrointestinal symptoms. I felt a bit light headed recently and my doctor diagnosed anaemia, further blood tests revealed I have coeliac disease.

The doctor said the blood test was only a very mild positive, and false positives do occasionally occur, but she would have to refer me for a gastroscopy and biopsy anyway. The biopsy was inconclusive.

So now I am very confused, don't know if I have coeliac or not, no idea what the next step will be. I have to see the doctor in a month's time, and they are going to make a decision about how to proceed.

None of my immediate family suffer with coeliac disease, my mother's sister has it but nobody else does, although a lot of them do suffer from diabetes.

From what I've said, do you think I am likely to have coeliac disease?

[Ursa Major]

What exactly was part of your bloodwork? I know that doctors often claim that you can have false positives, but I believe that isn't true. You CAN have false negatives, however.

Anemia is often the ONLY obvious symptom for celiac disease. Many people with anemia have been diagnosed with it, and they never had any gastrointestinal symptoms. If your biopsy was inconclusive, that means they found some damage, and can't decide what to make of it.

Personally, with a weak positive blood test, and an inconclusive biopsy, and having anemia, I believe it is more likely than not that you do have celiac disease.

You know, you don't have to let the doctors decide on how to proceed. It is your body, not theirs. Why don't you just try the gluten free diet? You may find that you had many symptoms of celiac disease, you just didn't know what caused them. There are over 200 symptoms of celiac disease, and only some of those are obvious gastro-intestinal ones.

[tarnalberry]

From inconclusive tests, the next step is to try the gluten-free diet, strictly, for two months, and see if you notice any improvement in your symptoms. It must be followed very strictly, or it will be as though you are not trying the diet at all. But the dietary challenge is a valid diagnostic test itself. Doctor's are often reluctant to use it because they think the diet is harder than it is. While it is a hard diet, feeling like crap is worse! :-)