I have been on vacation and have recently re-started reading facebook posts. Many, many of the celiac posts are earnest and people truly trying to learn about this disease. Most of the people responding are trying to help with the best knowledge they have. However, some of it is simply bad or inaccurate advice. Often times I feel like I’m the only one with good advice shouting into a hurricane of bad advice. My favorite is when I get put down when providing good or scientific advice. So, here are my most recent favorite outrageous posts.
A man was concerned that his diagnosis was inaccurate. He had a weak positive on his TTG IGA blood test, no biopsy, and 7+ months of a gluten free diet without improvement. The prevailing thought in the group was that he was still getting cross contamination and that any positive on a blood test was a positive diagnosis. It is possible that he really is continuing to have gluten exposure. Most of us have ongoing exposure no matter how hard we try. I’m not going to argue that continuing exposure isn’t really the issue here – it might be.
A woman wanted her 7-month old child tested for Celiac disease because she had celiac. Blood tests for celiac are inaccurate until the child is at least 3 years old. At this point the only way to test for the child to undergo an endoscopy, which seems a little excessive since the child hasn’t event been exposed to gluten really at this point. There is a miconception that in Italy all children are screened for celiac. In doing some research, this is not true. Italian children, similar to the US, only when symptoms arise. Now, if mom wants to perform a genetic test to see if the baby carries celiac genetic markers, I could understand that. I just thought this was excessive and kind of stood out to me.
Here’s the other side to that argument, nobody wants a child that has celiac to have delayed interventions. Ever. However, genetic markers to do indicate disease, only the possibility of disease. Complete celiac testing per current standards indicate a blood test and upper endoscopy with biopsy showing Marsh 3 or higher damage is the gold standard for diagnosis. The European standard for diagnosing children without a biopsy is that the TTG IGA be 10x normal, positive EMA, and positive genetic screening. Anything less than meeting either standard could have a root cause other than celiac disease and needs to be investigated fully. So, if you are advocating for diagnosis at 7 months, please be prepared to complete the testing and believe the results.
Airborne gluten exposure gives someone a headache as they walk through the bakery section at a grocery store. There has been one published study of airborne gluten causing celiac damage. It was a study of two farmers. Both fed their cattle gluten containing grains and wore protective masks. One man continued to have celiac damage and the other did not. So, it is possible if you are inhaling significant amounts of gluten containing grains on a daily basis over the course of years. It might be possible to work in a bakery and have the same issue. It also might be possible that some of these complaints are psychosomatic. It doesn’t happen to me. I don’t assume that because I got a headache it is gluten related. I just don’t. I assume nothing is gluten related. We should all assume nothing is gluten related until we can prove it is gluten related.
I have a cold right now. I’ve had a cold for about 10 days. I’m starting to think my autoimmune disease is making my cold last longer than it should. Until I talk to my friend that gave me the cold. Their cold lasted 10+ days too. So, it could be my autoimmune disease is not allowing me to heal fast or it could be that this particular virus lasts a long time.
We have to stop assuming everything is gluten related. The world is covered in gluten, but that doesn’t mean every ache, pain, or rash is related to gluten. Start assuming whatever is wrong with you isn’t gluten related and the burden of this disease will lighten. I promise. Because then the world isn’t against you and all the gluten in the world isn’t trying to destroy your life.
Just so you know, my best writing comes at the end of my posts. This is when I really get going. Or if I post several times in one day, that’s when the really good stuff comes. So, bear with me as I write the rest to get to the really good stuff.