There is a big debate in the Celiac community regarding the necessity or desire for a drug to help with Celiac. Here’s my take….
I was diagnosed with Celiac in 2013. I’ve been gluten free for a very long time. I’ve experienced every symptom, lived through most social situations with this disease, am raising two children, been kicked out of a drug trial, and read an awful lot on this disease. I’ve got clean blood tests and a clean biopsy – so the disease is not “active” in my body. I monitor social media about this disease and in general try to write stuff here so I don’t bore my family any more with my diatribes about Celiac.
I want a drug to help me with this disease. I want to be able to be invited to dinner at a friend’s house and not have a 20 minute discussion about whether I should bring my own food or not. I want to be able to travel freely within constant worry about being sick. I want to eat at a restaurant that is outside of my comfort zone without being worried about being sick. I want to eat at my local Chinese restaurant knowing I will be okay instead of having to patronize a large chain to get my Chinese fix. And yeah, sometimes I want someone else to make my food – I get tired of doing it ALL the time.
I understand many people are worried about “big pharma”, side effects, or long term effects. I agree. Those are worries, but at the same time, I worry about the long term damage being done to my system from low levels of gluten exposure. If I eat out, I may not get sick but damage is probably being done to my system. If I make a mistake and mistakes are inevitable, damage is being done to my system. Over time, this damage can add up to major issues – cancer is the one we most worry about, but long term vitamin deficiencies, anemia, and osteoporosis are probably more insidious and dangerous to our long-term health.
I see too many people on a day to day basis posting on Facebook about their accidental (or sometimes on purpose) glutening and wondering how to handle it. Some take drastic measures, like drugs to combat accidental poisonings. Some, like me, just suffer through. Others end up in the ER due to dehyration from stuff coming out the top and the bottom. We should not have to suffer like this at all.
If a gluten free diet works for you, I applaud you. I am glad you don’t make mistakes. I’m glad you are able to keep yourself healthy in spite of all the gluten surrounding us. You are rock stars!! You should be applauded because you are doing something better than me! Also, nobody would ever force you to take a drug. It is your choice to take it or not.
Finally, I want to see a drug for the children. My niece was diagnosed at age 4 after suffering for a long time before diagnosis. She has never tasted great bread or great pasta. She will never have a beer with her friends – in a camaraderie sense more than a getting drunk sense. She feels left out and while at sleep away camp was made fun of because of her need for a gluten free diet.
As an adult I can handle a lot of stuff that I would never expect a child to endure. The birthday parties where she has to have a special cupcake or spend the night parties where she has to bring her own food. These are things that we should be able to correct for her and all the other children that are suffering.
I think we need a drug to help with all of these things. But that’s just what I think!