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Even My Doctor Doesn't Believe Celiac Disease Exists!
- By Carissa Bell
- Published 09/26/2013
This is my very first blog on celiac.com and I wanted my first blog to be something that troubles me almost everyday. It began about a year ago...I suffered for half of that year not knowing why I was having severe skin irritation and the second half of the year trying to avoid the culprit.
I'm talking about wheat and I'm talking about how it effects me airborne. I was diagnosed with celiac disease back in early 2009, but these symptoms I started having were new and nothing I'd expierenced before. It started when I was out to eat with family and someone at the dinner table ordered bread. Moments after they received it my skin would start burning and itching, the next thing I know I would break out into hives. I would remain miserable and itching until I got away from the wheat then after 15 minutes usually I would be fine.
Now I really noticed this happening when I walked into a bakery. I went to this bakery near by because I was told they offered gluten-free options. I was only in there 5 seconds for the chef to inform me they do not offer gluten-free and I instantly started breaking out into hives and my skin was on fire. Five seconds is all it took for me to have a reaction.
Let's push forward a year later to now and when I am in the grocery store and near the bakery, smelling the wheat physically makes me sick to my stomach. I literally feel like I want to run to the bathroom and throw up. I've talked to many people with celiac and what I have gathered is that my reaction to wheat, on top of the normal reactions that most people get, is rare. I have met one other person who reacts the way I do but that's it. I talked to my primary care doctor and my GI doctor about this and both of them said they would have to research it and get back to me--it's been six months and I am still waiting on them to find anything on airborne reactions.
Since realizing I have an airborne reaction to wheat my life is what most people would consider to be sheltered. I live in a gluten-free bubble and I am much happier that way. Being as allergic to gluten as I am means that I can almost never go out to eat, and if I do I have to eat away from other diners or outside. If I am at the grocery store I cannot go down the isle that contains wheat and nowhere near the bakery. Someone please explain to me why in most grocery stores you have to pass through the bakery to get to the produce, the naturally gluten free foods. It is utterly unfair to people like me!
Gluten can affect people with celiac in many different ways. I've read that gluten can affect people in 50 different ways. That to me is quite a lot. I hope reading this is eye opening for both people with celiac disease and people without. Cheers!
As always, Celiac.com welcomes your comments (see below).
My name is Carissa and I was diagnosed with celiac disease in early 2009. Being diagnosed has changed my life for the better. I am grateful everyday to be gluten-free. My doctor advised I see a nutritionist and by the time I saw her, which was 3 weeks after being diagnosed I already knew more than she did about celiac disease. I also had an interest in nutrition but after realizing that my nutritionist knew very little about celiac disease I decided to study nutrition, which is what I am doing now. I spend a lot of time studying anything related to gluten free, it is my passion in life. Since being diagnosed I have helped many people around me realize how harmful modernized wheat is to our bodies and many of those people I have educated have given up wheat and feel great and have me to thank.
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