I’ve been on my heels a lot lately. Summer time, more kids around and less personal time, the Nexvax trial being stopped, and a variety of other things. So, I’ve been ruminating about what I believe in and what is important to me as someone with Celiac. There is a great scene in the movie Bull Durham where Kevin Costner’s character is “trying out” to be Susan Sarandon’s boyfriend for the summer baseball season. Costner’s character gives a diatribe about what he believes in about baseball. Here’s what I believe in regarding Celiac.
I believe in science and research proven information about Celiac disease instead of rumors and baseless information that gets circulated on the internet with little regard for accuracy.
I believe that the FDA needs to more tightly control labeling restrictions for gluten free items and those that violate the law should be heavily fined.
I believe General Mills should be fined every day and that the Celiac Disease Foundation (while they do a great job most of the time) is wrong on the Cheerios front.
I believe we should eat primarily whole, fresh foods and eliminate as much of the processed junk as possible. And yes, all of the highly processed foods are junk and I might even argue, not food.
I believe that a Celiac sufferer can safely eat in a non-gluten free house.
I believe that if a child under 10 is diagnosed with Celiac and lives in your house, the whole house goes gluten free.
I believe that soon, the gluten challenge will be a thing of the past.
I believe that following the American standard or European standard* for diagnosis should be adhered to consistently and without fail for proper diagnosis and anything less is irresponsible medicine.
I believe that there will be a medication on the market to help with Celiac symptoms within the next 5 years. I hope there will be a cure within 10.
I believe there needs to be a better way to monitor the disease and our compliance with the gluten free diet than the tools we have now.
I believe that much of what we think is a cross-contamination glutening is not, but is really some other issue in the system and we are too quick to blame gluten because it is easy.
I believe the lawsuits regarding restaurants and gluten are misguided and dangerous for our community.
I believe that we can live with this disease, but that it systematically destroys our bodies over time.
I believe many people make this disease much harder than it needs to be.
I believe that people are good and always want to help us when bringing us food, even though we can never trust it.
I believe we live in a gluten covered world and we are in the minority. We have to protect ourselves while living in this world. We have to manage our disease completely on our own with little to no help and we have to do the best we can. I believe with a bit of humor, humility, and common sense, we are able to live and thrive in this gluten covered world.
That’s what I believe. There might be more, but those are the biggies. That is what many of my blog posts revolve around these principals.
*American standard for Celiac diagnosis is any positive Celiac blood test and positive endoscopic biopsy with Marsh 3 or higher damage. American standard also allows for positive punch biopsy of Dermatitis Herpitiformis and not other test is required for DH. European standard is triple positive with TTG IGA 10x normal, plus EMA IGA, plus positive genetic test – this may miss <10% of celiac sufferers and is still controversial.