Friday, September 26, 2014

the gluten free stigma

So recently I wrote about being a Type 1 diabetic and the frustrations associated with that. Well, in addition to being a Type 1 diabetic, I also have celiac disease. I know. Pitiful, right? I was diagnosed with celiac at the beginning of 2008. My diagnosis was bittersweet. I had being feeling horribly for quite a while so there was some relief in knowing the cause.

Let me explain the disease to you, so that you can better understand why it's kind of a big deal. Celiac disease is an auto-immune disease (like Type 1 diabetes. Also, if you have one auto-immune disease you are much more likely to have another. A lot of T1D have celiac). Having celiac disease does not mean I am allergic to gluten, though some people can have an allergy to gluten. Celiac disease means that your body attacks the small intestine when you ingest gluten. You have these finger-like things in your small intestine called villi, that absorb nutrients. So when you eat a tomato, it's the villi that take all the good stuff from that tomato and puts that into your bloodstream. Well, when someone with celiac eats gluten these villi are flattened so they are not able to absorb nutrients very well. HELLO!!! This is a big deal. This is why the symptoms of celiac can be so different. Everything in your body needs nutrients.

When I was diagnosed with celiac I was severely anemic and I had to get 4 iron transfusions. My body hadn't been absorbing iron so I was exhausted all the time. The last time I had a test performed to see how the villi were doing in my small intestine, they were still flattened. The doctor didn't seem too concerned and he said it takes different people different amounts of time for the small intestine to heal. So, I continue to eat gluten free. I don't feel particularly bad but I do wonder if there are things happening on the inside that I don't know about. 

Celiac disease brings many frustrations and most of them are not related to gluten-free eating. Not being able to eat gluten isn't really the worst part of celiac. It's the stigma attached to gluten-free eating. People think I'm asking about ingredients because I'm "one of those people" who are eating gluten-free and they don't even know what gluten is. Listen up people- even if I was one of those people, let me ask, ok?! I have a right to know what I'm eating. I was a server off and on for 5 years, so I know that finding out the ingredients or how something is made is really not that big of a deal. Eye rolls are not necessary. When someone is requesting these things at a restaurant, we just have to assume that they have a good reason.

The other equally frustrating part of celiac disease are the doctors. I don't know what it is about gastrointestinal issues, but gastroenterologists can be the worst. I have talked to several at my job and they are so over celiac disease. I actually had one doctor tell me that nausea wasn't a symptom of celiac disease. This was his specialty (the stomach & intestines) and he actually didn't know that nausea was a symptom of the disease. Gastro doctors don't take the disease very seriously. I cannot find a doctor anywhere in the state of Tennessee that specializes in the disease. My doctor is perfectly nice. He just seems so nonchalant, so I'm always on the lookout for a better gastroenterologist. 

Luckily, eating gluten free nowadays isn't that big of a deal. Savannah is a precious angel from heaven and eats & cooks gluten free most of the time like a champ. We have separate toasters so she can eat non-gluten free bread toasted. You have to think of things like that. You can't just worry about whether or not something has gluten in it. You have to worry about cross-contamination. So if a little piece of her bread got on my bread, I could get sick from that. That's frustrating and it takes lots of thought and planning. Then there is the issue of products that don't have gluten in them but are manufactured in facilities that make gluten containing foods as well. You can't really eat those things as well. So really examining labels is crucial, but it has become second nature to me. 
So next time you talk to someone who is eating gluten free, just give them the benefit of the doubt. Maybe they are following a fad or maybe they have celiac or they have an allergy. Who cares?! If you really want to show some love to a gluten free eater, remember them the next time you are cooking or baking something where they are attending. My friends are fabulous about this and always consider me by having a gluten free option available. I can't express to you how much this means to me. 
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  1. Hello! I met you guys at Made in Nashville a couple of weekends ago( Adventures of a Mamarazzi Blog) I had no idea you had Celiac Disease as well. I was diagnosed a little over 2 years ago. Would love to do some recipe trading :)

  2. Oops. Wasn't finished. Hate it when I do that. Anyways, great post! I def share the same frustrations. Why do we get hateful looks when trying to order? I mean this isn't some fad diet for us. Also, GI's kill me with how little they seem to care about Celiac. I lost a lot of weight initially when I got my diagnosis and I got comments like "I wish I had Celiac so I could lose weight" It's like ppl don't even realize it's a real disease people!! Rant over, but great post!