1 Year Gluten Free, Still Frequent Stomach Pains

[FamilyofFive]

hi,

my daughter was diagnosed with celiac disease in Jan 2010 and she has been gluten free ever since. Her primary symptoms were severe stomach pains, distended belly, and chronic ear infections, sinus infections, etc.

Within the first 3 months of going gluten free she was literally like a new person. Her energy levels were up, her belly went down. We were thrilled. Her ear infections did not really let up, so this past fall she had her adenoids removed and had tubes put in her ears. However, her stomach pains, while nothing like they used to be, are still persistent. Nearly every day she complains of her stomach hurting and her teacher says she complains often at school (even when it is during an activity she enjoys).

I am at a loss of what else to do to try and help. we've seen an osteopath and that provides some relief, but very temporary. Is she resigned to have a weak stomach forever? I feel terrible that I can not help her and do not know what else to try?

I'm fairly certain we are keeping the gluten out of her (she's eaten stuff on accident and then the pains are much more severe), but have been eating items that are made in facilities that process wheat. Could that be it?

Any insight or suggestions would be greatly appreciated.

Thanks

Jen

[teresasupermom]

Has she had her antibody levels rechecked? Our GI doc has been checking every 3 months to see that they go down. To our surprise my dd's levels initially went down, but have steadily been going up. We have had to really change things more than I thought and are still trying to pinpoint all the sources of glutening. We've found a few things in the past couple months that I've realized even though they were gluten-free have been contaminated. We also finally switched our whole house over to gluten-free which has been challenging. I guess I would want to recheck her antibodies and see if she's being inadvertently exposed to gluten. You could be missing things. (We've been at this a little over a year too.)

[FamilyofFive]

thank you so much. our pediatrician diagnosed it last year and simply told us to maintain a gluten free diet. there has not been any follow up. I will ask to get her tested more regularly.

[mushroom]

Yes, I agree, a retest would be in order to ensure dietary compliance. I don't know if you have a gluten free household, but it is very hard to keep one person gluten free in a household of gluten eaters. Not only does flour disperse in the air and land on things, but unless you use separate pans and utensils and colander and toaster she is likely to be cross-contaminated.