In my family, I’m the one with Celiac disease. I’m the only one. My husband has a stomach made of cast iron and my children do not carry the genetic markers for Celiac. So, it’s just me.
In my extended family, I have a fourteen year old niece with celiac. She was diagnosed before me. Otherwise, nobody else has food issues. It’s just me.
In my family, our lives revolve around my disease – what restaurants to go to, what we have for dinner, what social events, where we can vacation, all of it revolves around whether I can eat safely or not.
My kids hate it. Many times when eating with their father or other relative and I’m not around the restaurant of choice is “anything with gluten.” When I’m sick from a glutening, they understand, tiptoe around, and stay out of one of the two bathrooms in our house just in case my insides want to get on the outside quickly. But they endure and take in stride.
My husband though took a while to come around. When I was diagnosed over 7 years ago, there was some ribbing about my disease being a “white person’s” illness or that all “gluten free sucked”. After a few months, he realized that this was serious. He further realized I could live long enough for him to not be young enough to get the 20-something new wife. (This is a joke, so please do not bash him.) He still says that most gluten free items stink, but has come around to understanding that I need and/or want them.
My husband also has turned into my biggest advocate. He didn’t hesitate when I suggested participating in the Nexvax trial. When I wanted to take a gluten free cooking class to learn to make gluten free pie crusts – he was all for it. Last night, when I told him I hadn’t eaten dinner because I was at a swim meet and didn’t plan for it, he brought me gluten free crackers and cheese in bed to make sure I had some food.
I realize not everyone has the support that I do. I further realize that many people think this disease is a joke because there is no medicine and is only controlled by diet, which means anyone can “cure” this disease.
I typically don’t get into debates with people about what I can and cannot eat. I give people enough information to keep me safe but not so much I sound whiny. When talking to wait staff, I say, “I have a gluten allergy and celiac disease. Can I please talk to the chef about what is safe?” Or, if the server is unclear about whether an item has gluten, I ask them to double check with the chef. Extended family hears, “I have an autoimmune disease that affects my small intestine. I have to be 100% gluten free so that I can be the best friend/wife/sister, etc. for you I can be.” For strangers offering food, “No thank you, I just ate a big lunch/dinner.”
I don’t go into a diatribe about cross contamination because people think it is picky and petty. If they think you are being demanding or overly sensitive, I think people tune out. It’s like that annoying drunk relative that is always going on and on about politics and religion that you start to tune out. You tune out because they are incapable of hearing anything other than their point of view. Don’t be that person about cross-contamination and gluten – your health depends on it!
Anyway, this is a long and rambling post about a variety of topics. I started it several days ago and just am finishing it today sitting by the pool, getting my fill of Vitamin D.