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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.

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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).


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14 Responses:

 
Twinny

said this on
01 Oct 2013 8:01:37 PM PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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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Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come. If you've not already seen it there's advice and further info here: It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...

Hello again Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside. What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example. You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest. If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember:

Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

I'm sorry that life is so hard right now. Really. I can't imagine working 3 jobs and trying to manage this terrible illness. I think about American society and their obsession with food often. Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies. A loaf of gluten-free bread will last me 4-6 months in the freezer. I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty. I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. Good luck!

Hi! Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too. Gall bladder problems are often associated with Celiac Disease. Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....