Apr 30, 2009

Problems with Celiac Disease Being Called a Gluten Allergy

Celiac disease is a serious autoimmune disease, not an allergy. Similar to an allergy, when you have celiac disease you must be extremely careful not to ingest any gluten and eating gluten is dangerous to your body, but the similarities to an allergy end there. Some people are allergic to wheat, rye, and barley and thus say they have a “gluten allergy”, but that is different than people who have celiac disease.

Here is a great quote from STAT Kids.

“While technically Celiac Disease is not an allergy, it is commonly referred to as a gluten allergy as a practical way to explain the dietary restrictions it requires. Although ingestion of gluten does not cause an acute, life-threatening reaction, it does cause a physical reaction which can make a person with Celiac Disease sick in the short term, and exacerbate a chronic condition over time. Since many schools, child care facilities, restaurants, and the public in general are becoming more allergy-aware, using the term gluten allergy facilitates the immediate goal of preventing an exposure to foods containing gluten.”

When at restaurants, there is a definite need to describe celiac disease as an allergy. However, in the media, I believe it is extremely important to not refer to celiac disease as an allergy when the intent is to increase celiac disease awareness. I have seen several television interviews, articles, and even books describe celiac disease as “a gluten allergy”. So, what are the problems with calling celiac disease an allergy? I recently asked this question on twitter and before I share the responses, which include two useful links explaining the differences between celiac and allergies, here are some of my answers.

Since 97% of people with celiac disease are undiagnosed, accurate information which encourages people to be tested is important.

Allergy testing does not include testing for celiac disease. So, if you have been tested for food allergies, it is unlikely that you were also tested for celiac disease. Testing negative for an allergy to wheat, rye, and barley does not mean you do not have celiac disease. Some people who test positive for gluten allergies may also have celiac disease, but testing positive for a gluten allergy does not mean you have celiac disease.

Most of the 256 symptoms and related conditions associated with celiac disease are different than symptoms of food allergies. When you experience celiac disease symptoms such as fatigue and joint pain, it is not obvious that this could be because of eating gluten. Futhermore, some people with celiac disease show no symptoms and show no external reaction when they ingest gluten.

While wheat is one of top eight allergens required to be listed on food labels, gluten is not. Including gluten as an allergy on food labels to aid people with celiac disease and gluten sensitivities would be very useful. Celiac is sometimes referred to as a "wheat allergy", which again is inaccurate.

Responses (quotes) from the gluten free twitter community

tastyeatsathome the reaction is different. And an allergy you can sometimes "grow out of". Celiac is life, baby!

celiacdisease here's my reason why CD should not be called an allergy: http://tinyurl.com/cvw5kn

madamebarberi using the term allergy REALLY does not paint a realistic picture of the disease or its implications!

souralice because then people don't understand the full effect of gluten on our bodies! I always hear "why don't you get allergy shots??"

GFTiff Can not increase tolerance over time to gluten (like you can to dogs and cats via allergy shots).

GFTiff Not an allergy because:Cant take benadryl/claratin/etc allergy med for gluten-reaction. Epi-pen not for gluten-reaction.

GFCosmetics Reason it isn't an allergy - Because you can't take medicine to clear it up like hay fever.

I think these two tweets from GingerCM sum it up well!

GingerCM Celiac isn't an allergy at all -- it's a disorder of the immune system. http://tinyurl.com/crtg9u

GingerCM BUT, when I'm on real time/eating out, unless it's a GF friendly place like Outback, I stress "allergic" part for my safety

Follow me on twitter - MarylandCeliac and all the other wonderful gluten free people on twitter.

1 comment:

jgoodfellow said...

Thanks for sharing this. It was very interesting to read!