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Gluten-Free for 3 Weeks and Still Not Feeling Well

October 25, 2011

Gluten-Free for 3 Weeks and Still Not Feeling Well

October 25, 2011

Question

Coco was just diagnosed with celiac disease after battling tummy issues for years. She is 10. We have cut gluten from her diet, but are wondering if cross-contamination, even a crumb, can trigger a reaction? We are very careful but her tummy still hurts. She has been gluten-free for 3 weeks.

From,

Coco’s Mom

Answer

Hi Coco’s Mom. The good thing is that Coco was diagnosed young and can start her journey to health. If Coco has a confirmed diagnosis of celiac disease, then yes, even a miniscule amount of gluten can trigger a reaction. The recognized gluten threshold that current science shows to be safe for the majority of celiac patients is 20 parts per million (ppm). This won’t mean much to you now, but will help you as you shop for foods labeled “gluten-free.”

Continuous exposure to small amounts of gluten over time will prevent the intestines from healing and can potentially lead to nutritional deficiencies and other long-term conditions, such as other autoimmune disorders and even cancers of the GI system. I don’t want to scare you with these facts, but do want to stress the importance of Coco avoiding gluten completely. If she is diligent about eating gluten-free, these diseases shouldn’t be a problem, especially since she was diagnosed so young.

As you see, preventing cross-contamination is extremely important and, therefore, requires diligent label reading for packaged foods and diligent research and questioning when eating outside of the home. If her tummy still hurts after being gluten-free for 3 weeks, it is likely that she has been ingesting gluten due to cross-contamination incidents.

Learning how to live 100% gluten-free is a learning process. I highly recommend limiting dining outside the home as much as possible until Coco’s intestines start to heal and you have a better handle on cross-contamination issues, both in and out of the home. Once she feels comfortable with living gluten-free at home, you can then tackle the harder issue of eating away from home.

Beyond Celiac has great resources to help you get started: Check out the Resource Library.

Thank you for your question and we wish you and Coco well.

Rachel Begun, MS, RD

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