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Even My Doctor Doesn't Believe Celiac Disease Exists!

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).


Spread The Word



14 Responses:

 
Twinny

said this on
01 Oct 2013 8:01:37 PM PST
Today was the first time I have had any reaction to airborne wheat. I walked into the Olive Garden to pickup bread sticks for an elderly couple to add to their dinner and became instantly nauseous. I have not been there in nearly 10 years. Weird!

 
Carol

said this on
29 Sep 2013 12:39:01 PM PST
I react the same way Carrisa. I avoid grocery stores until approximately 2:00 pm when the bakery closes for the day. Can't walk past a pizza restaurant in the mall unless I hold my breath. Had to quit volunteering at school because they bake too often and the aroma waffs through out the building. Inhaling gluten brings a 3 day migraine. But life is much better without gluten!

 
ekh

said this on
30 Sep 2013 10:12:30 AM PST
You are not alone in reacting adversely to air-born gluten. I was diagnosed with celiac over 35 years ago and I still stay away from bakeries, grocery stores who do inhouse baking and dinner parties where they bake their own wheat bread. My reaction is swelling, joint pain and intestinal problems which last about a week or so. I guess we just have to learn to live with this malady!!

 
Michael

said this on
30 Sep 2013 1:08:17 PM PST
Carissa, I also have to avoid airborne gluten. Although my reaction time is not nearly as quick as yours, I bet my recovery time is longer. I have to hold my breath in the bread aisle of a grocery store: two lungfuls while smelling bread strongly is my limit. Same with any heated gluten, whether it be toasted bread, pizza or boiling pasta. I experience all of the neurological symptoms, as well as the gastrological skin, etc. The symptoms start anywhere from two hours later to the next day. Ataxia and extreme tiredness are often the first symptoms I notice. Just being downwind of a restaurant is dangerous for me. Case in point is the oil fumes from deep frying chicken. I just read another celiac's account of the same noticed vulnerability to oil from fried chicken. The writer is a pilot in the USAF.

My doctor has been GF for a couple of dozen years, and she is aware of celiacs like us. I had dinner with Dr. Rodney Ford one year ago, and he is aware of our vulnerability also. He says that if a child is diagnosed with celiac, the whole family must go GF.

 
Carissa Bell

said this on
03 Oct 2013 11:38:17 AM PST
Michael, thanks so much for sharing. I've actually thought that I may have Ataxia for quite some time now when I read an article about it in the Living Without Magazine. Have you been diagnosed with Ataxia or is this a self diagnosis? It's awesome to read that your doctor is gluten free!! You are one of 7 people that responded to having airborne reactions and it's confirmed comforting to know that I am not alone. I think some of my friends and family think I'm making this up but trust me I'm not. Well who am I kidding you know I'm not.

 
Michael

said this on
30 Sep 2013 1:27:11 PM PST
Here's some of my research on airborne gluten. Wheat flour particles can be as small as 1 micron, and water droplets in steam can be as large as 5 microns. You do the math. Water or oil evaporating can carry particles of wheat with them. That's why we can identify what's cooking with our nose and brain. Although we know that inhaling plus swallowing equals ingesting, Dr. Karrazian has written about leaky lung and leaky brain. Furthermore, my doctor says when you inhale it, it can get directly into your brain through the cribiform plate, and has witnessed immediate cerebral wheat allergy, resulting immediate display of behavior like inebriation.

 
stu

said this on
30 Sep 2013 2:00:24 PM PST
No surprise here. The Dermal Immune system is the "First Responder" whenever we are simply exposed to an allergen or irritant, and it happens very fast, producing the anti-gliaden antibodies that cause our illness. I have the same reaction if I simply come into contact with a gluten contaminated surface.

 
wildninja

said this on
30 Sep 2013 4:52:54 PM PST
You're right--celiac can affect people in very different ways. The bottom line is that your immune system freaks out when exposed to this food protein.

But you might be reacting to others too-- like egg and/or dairy. I'd highly recommend having an ELISA test to find out if gluten is the only thing you react to. I know a lot of celiacs who have more than one allergy. I have many because my celiac went undiagnosed for so long, and when you're dealing with malabsorption, other food proteins get farther into your body than they're supposed to, causing your immune system to attack them as invaders.

The good news is that once you know what's wrong, you have control over what's making you sick and life improves dramatically. Yes, there will be sacrifices, but it's worth it.

Doctors basically told me I was crazy before I was diagnosed too, and I've heard the idiotic statement "I don't believe in food allergies" from a GI doctor before.

I don't know where you're located but these doctors are great and have a great website that includes information on ELISA testing (a simple blood test). Google the Center for Food Allergies in Seattle.

God knows everything you're going through and there is certain to be a purpose in this pain. I'm glad you're speaking out and helping educate others.

 
doug newman

said this on
30 Sep 2013 5:42:56 PM PST
I know what your going through been there and still trying to help others understand what the celiac disease can do to your body. When I was found to be celiac my co-workers had a hard time believing me. the company I drove for was the same and the insurance companies would not recognize celiac as a reason for my absence from work. All said and done, I'm in the same boat--can't breath it or handle it "wheat" and being a truck driver is next to impossible. My family members think I have been suffering since birth and in 2007 it came out threw my pours with vengeance. But what I would tell your doctor is to get hold of Dr. James Gregor in London, Ontario.

 
Carissa Bell

said this on
03 Oct 2013 11:54:33 AM PST
Thanks for sharing!! I was diagnosed in 2009 but believe I had it my whole life too. 29 years suffering. 6 months prior to being diagnosed though it was basically coming through my pours too. So grateful to have been diagnosed and know what the issue is now. I'm in Texas so I'm afraid your doctor is a little far away.

 
Carissa Bell

said this on
03 Oct 2013 11:58:29 AM PST
Thanks everyone for your informative responses. It's really empowering to know others out there suffer like me and that I have people who actually listen to what I have to say. I do a lot of gluten preaching as I like to call it, my free time revolves around reading anything related to gluten so thank you.

 
James

said this on
07 Oct 2013 10:46:50 AM PST
It sounds like you might actually have an allergy (IgE) to wheat. Your symptoms (itching, hives, nausea) are classic allergy symptoms and similar to someone allergic to nuts for example who reacts whenever they are in a room with nuts. Have you been to an allergist? It would be worth having blood and skin tests to determine if it is IgE, and if so you should get an EpiPen in case the reactions get worse.

 
carissa bell
( Author)
said this on
13 Oct 2013 12:37:10 PM PST
Hmmm food for thought James. I have not been to an allergist but I have considered doing so here recently. I will definitely look into this thank you for your input!

 
Kathie Kidd

said this on
07 Oct 2013 8:56:11 PM PST
Carrisa, my heart breaks for you, and for the patients of your GI physician who fails to believe or recognize that celiac disease exists not only in airborne particles, but also with certain highly allergenic people who only have to touch foods containing gluten (or even bags of food containing gluten that result in people breaking out in hives and evening having airways completely closing shut. For those people, gluten can truly be life threatening. I shop only at a specialty store, and all gluten free foods (and I have many other life threatening allergies other than gluten however, my grocery market separates the gluten free and other highly allergenic foods from the other parts of the supermarket). What I do is ALWAYS wear latex free gloves and a face mask. While it doesn't filter everything from inhaling all allergens into my body, it really does cut down on a lot of the really big ones. Then when I leave, both my husband and I discard our non-latex gloves and masks and we wash our hands and faces with aloe wipes, and wipe our hands and all the surfaces of our car with anti-bacterial wipes as well. When we come home, the first thing I do is jump into the shower and my husband puts up all the food, and wipes down the entire kitchen and mops the kitchen floors - then he jumps in the shower so we don't pass any allergens back and forth to each other, even tho I am the one who has the problems. It really seems to have made a difference in the last 2-3 months, and it's worth a try.




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