Not Sure What To Do

[Courtnee80]

I'm pretty new at this and not really sure what to do next. My son just turned 6 he is 42lbs and 44 inches. Since he was about 15 months he has had chronic diarrhea. He has gotten blood work for Celiacs Disease 3 times and a biopsy when he was 2. He just got blood work for it 2 months ago but it comes back neg. everytime. The biopsy was done in Boston and the GI doctor said nothing was wrong with him. He has gone to the GI doctor once since then but he tells me nothing is wrong with him. He has been late going to the potty many times (including just tonight). He sometimes gets stomach cramps. He hasn't lost any weight but just gains really slowly (only 1 1/2lbs since last May). He has gotten tested for other things but also comes back neg. My problem is should I tell the doctor I would like another biopsy done or just put him on a gluten-free diet. My friend has been a Celiac for about 5 years now and she thinks that is what he has and I should just stop giving him gluten. But I know that you can't be tested for it if your on a gluten free diet and I'm not really sure if my family will go for my self-diagnosis. Really sorry for such a long post and if this is in the wrong place.

[mushroom]

Testing of children is often unreliable, and there are are many false negatives, in adults also. It is really hard to decide what to do when the testing is negative but you 99% sure gluten is the problem. You could do a short trial of, say, two weeks gluten free; that should be long enough to show some improvement if he is gluten intolerant. You could then present your results to the GI and ask him to do a repeat endoscopy/biopsy. As long as your son resumes eating gluten at that point the two weeks should not be so long that the healing which took place would give a negative biopsy result; and you already know that he does not test positive for the blood antibodies, but then not everyone does.

If he is gluten intolerant he is at risk of suffering greater damage if he continues eating gluten, as I am sure you know. If I were you, even if you had the repeat biopsy and it came back negative, if he responds well to the diet I would do it (go gluten free). It is a shame if you do not feel you would get family support for this decision. Is there any history of celiac/IBS-type problems in your family or your husband's, or of other autoimmune diseases? This would give support for your decision if so.

[Courtnee80]

I know my grandmother has had stomach issues for a long time now but her results have always come back neg as well. My mother has Alopecia which is considered an autoimmune disease. As for my family they think that since his tests have always come back neg. it means he doesn't have it. I just think that they will give him gluten because they feel he is missing out. He has also been a vegetarian for almost 2 years and they think that is why he is so small. I'm also worried about not finding enough for him to eat because he is a vegetarian. He also doesn't have diary or eggs. I make most everything he eats myself unless he is some where else. And there are certain foods he just won't eat like pasta, candy and most cakes. I just don't think he'll care if its rice pasta instead of wheat he still won't eat it. I'll have to see if I can find enough vegetarian gluten free food to try going 2 weeks and hope no one sneaks it to him.