If Gene Testing Is Positive For celiac disease, Should You Be On A gluten-free Diet?

[jmeikle]

I have Celiac Disease (diagnosed by biopsy and blood tests). I have had one of my identical twin boys tested for both the celiac disease gene and antibodies. He tested positive for the gene but not the antibodies (I realize the other boy should be tested for antibodies, but the gene test is not necessary as they have identical genes). Both boys are slim, but would get extremely bloated bellies after they ate - so, since they both carry the gene for Celiac, and I am already gluten-free, I decided to experiment by putting them on a gluten-free diet to see if it had any affect on their bloated bellies - it has made a noticeable difference - to the point where I can tell when they've eaten gluten at a friend's house because of the size of their bellies when they come home, as well as the next day. My sister saw a GI doctor to be tested for both the gene and the antibodies, but the dr told her not to go gluten-free if she has the gene but not the antibodies because if she then has gluten it could trigger celiac disease. I wouldn't want this to happen to my children, but since they carry the gene for celiac disease, it does not seem like gluten is a good thing for them to have - and there is a physical change that I can see when they do have gluten. Does anyone have any insight on this?

[Cara in Boston]

I am no expert on this and fairly new to the whole thing . . .

It is my understanding that having the gene only means you may (someday) develop celiac disease. First degree relatives of anyone with celiac disease should get tested on a regular basis (every 2 years) or earlier if they show any symptoms. Since your boys are already showing symptoms, you should probably begin the testing process. They must be on a regular diet in order for the tests to be as accurate as possible. Even then, you could still get a false negative, especially with young children.

Both my doctor and my son's doctor have assured me that the gluten-free diet poses no risk to anyone who is not sensitive to gluten in the first place - they will not "become" sensitive after being gluten-free. This will only happen to someone who should not be eating gluten in the first place. (My other son and husband are negative, but eat mostly gluten-free at home.)

Not sure it this answers your question, but I hope it is helpful.

Cara

[jmeikle]

Thanks for your reply. That's my understanding too - that they carry the gene and so could develop celiac disease later. Glad to hear another doctor has said that eliminating gluten won't necessarily make them more sensitive to gluten if they have it. My view is that since they carry the gene, it can't be good for them - and I've seen what it does to them physically - which is enough for me to think gluten cannot be good for them.

[Kate79]

About 30% of the U.S. population has at least one of the genes for celiac, but very few of them ever develop it. That said, if they're showing bloating and other issues - and since you have it - they should get fully tested. They could also be gluten intolerant, which can happen whether you've got celiac genes or not.