I have recently seen a mother who was diagnosed with celiac disease 10 years ago. I asked her if she was zero gluten. She said no!
She explained that this was because small amounts of gluten did not seem to upset her: she did not experience any symptoms when she ate small amounts of gluten foods. Consequently, most days she is eating gluten in the form of biscuits or cakes or cookies or sauces or …. she is not gluten zero. Suggest that the be gluten-zero: not gluten-free.
The fact is, she is eating enough gluten to continue to cause her harm. She did not understand this. She has not been managed by anyone over the last ten years. She did not get any follow-up blood tests or advice. She has been left to fend for herself. She believed that if she didn’t have symptoms, then gluten wasn’t harming her. This is so wrong!
Be gluten-zero: not gluten-free
Her story is one of the reasons why I am advocating for the gluten-zero label. The term gluten-free is too lax. People often ask me “How gluten-free do I have to be?” She felt free to eat as much gluten until she got symptoms. I organized blood tests for her to measure her gluten and celiac markers: she did have evidence of ongoing gut damage (high tTG and DGP measurements). She had significant celiac disease gut damage. She has a future of auto-immune disease and early death if she doesn’t get her diet right. She needs to eat gluten-zero.
She just didn’t know. She had not been properly followed up. She said that she was gluten-free, but was still eating gluten! The term GlutenZERO might have helped her. How many other people with partially treated celiac disease are there?
By Rodney Ford