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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Breathing Problems With Gluten/Wheat?
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11 posts in this topic

Recently, I have been having some weird, sometimes scary, breathing problems related to gluten/wheat. I have been having symptoms off-and-on, being very hard to pinpoint which foods were doing this to me. The last few weeks, the symptoms have been getting closer and closer to the ingestion time of the food that it has caused me to think its gluten/wheat. Whats weird is that I don't have hardly any of the gastro-intestinal symptoms normally associated with the allergy. Lately, I was suffering from heart-burn and a slight unusual bloating from gluten foods, but nothing as harsh as it says on certain websites. The last few weeks, when I eat gluten and/or wheat:

1. - I will get a stuffy nose within 15-30 min. of ingesting the food

2. - After about another 30 - 45 min. my sinuses will open up a great deal. During this time, I may also feel like I am not breathing very well in my lungs and lung area.

3. - During the night (if I ate the food at dinner) I will have breathing problems, and on into the morning, keeping me awake. Sometimes my heart will race by itself.

4. - In the morning I will pretty much always have a bad headache.

I noticed that since I stopped eating gluten/wheat, all these symptoms have stopped. If I eat a product that says "shared with equipment that processes wheat/gluten" I will usually feel the same symptoms, although not as harsh.

I have been struggling with various problems with certain foods for a few years now, ever since I had Mononucleosis back in 2006. It took the doctors 3 months to diagnose the mono! When I was sick, I also started having problems when consuming certain foods. I told my doc, and he said "its not food allergies" but sent me to an allergist at my request. Then the allergist told me "You don't have food allergies" when I explained my symptoms to her. She told me she would test me, but the tests would take hours and hours and she was sure I didn't have allergies. So I left. I also went to a Kinesiologist/Chiropractor who told me he couldn't find any food allergy problems. I am at my wits end. My latest symptoms are the most harsh in a while that I have experienced. Any suggestions would be appreciated.

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There have been other people on these boards explain a lot of the same things you are going through and found out that not only were they Gluten Intollerant/Celiac, they also had an allergy to wheat and even gluten in general. The only way to find out is to go through the testing with the allergist. Did she happen to mention the tests that will take the "hours and hours"? Considering that you are having issues to foods that have shared conditions that you really need to get checked.

I saw one and they told me that it wasn't food allergies because my reaction wasn't like that of a person with severe food allergies (peanuts, shellfish, etc....). I didn't react to the scratch test for wheat but did find out that I have allergies to things that I never seemed to react to.

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I went to an Ear, Nose and Throat specialist for almost this exact problem. I always had sinus issues, a lot of drainage, etc., however would notice the feeling that my throat was closing up on me and a lot of the same symptoms that you explained. My doc referred me to an Ear, Nose and Throat specialist, and he declared I had food allergies. The test was a simple blood draw and took two minutes tops. He had a dietician sit with me and discuss what foods I eat most regularly, and went over common allergens with me to help decide which foods to test for. I believe that 10 foods were included in the cost of the testing and anything more than that was added expense. About a week later the dietician called me back and I met with her to go over the results. It was no big deal, and now that I am gluten free my sinuses are clear and I no longer feel like I can't breath. There are many other symptoms that are now gone as well, however gluten definetly affects my breathing.

That doc told me that airborne allergens are tested for with the pin pricks in the skin and food allergens are a simple blood test. To anyone out there, is this correct info? I don't know that for fact, however my blood draw showed wheat to be an issue, and since cutting out all gluten I have never felt better.

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Goodness, you just described the problems with breathing that I went through from age 8 until I began to diligently stick with the Celiac Diet. I'm now 65, so I understand what you are talking about. I went through all the food allergy tests at age 19, when the doctor said I would be bedridden by the age of 25 if I didn't. I already had 2 babies, so you can understand why I would have the tests, even though it was a financial sacrifice. Three years later I still had the same asthma and recurrent bronchial infections, eventually progressing to severe bouts of pneumonia that would put me into the hospital (by then I had 3 children). I spent all my time & money on respiratory "specialists," but in the beginning a vaporizer was about all the medical community had to offer, then, finally, they came up will pills, and in 1984, as I was in the UCSD Medical Center hospital, they advised that if I got a Pulmoaide Breathing Machine, I would never be in the hospital again. It has worked. By then I had started eliminating grains & milk products and could see vast improvement, but then I would go back to eating them again, not realizing that I had to avoid them FOREVER. In 2000 or so when I went for a colonoscopy (my father died of colon cancer) the nurse looked at the list of foods I avoid and said, "Oh, that's called Celiac Disease!" so I got on this site and learned all I could, and even discovered later that casein, whey, yeast, msg, and maltodextrin and modified food starches from foods other than corn had a profound effect on my breathing.

I often eat vegan for long stretches of time, then add in protein (chicken, fish or turkey usually) as I crave them. I take medications daily for breathing & use the Pulmoaide machine 2-3 times each day (it is a mist that you inhale). Summers I do great, and winters are a challenge. I wish you the best! Welda

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Thanks everyone for your input, I appreciate it very much! Looks like possibly a long road ahead. I'm already sick and tired of eating the same foods over and over. And some of the gluten-free foods are very expensive. Also, its strange how alot of the gluten/wheat free products actually say they are also contaminated by other foods on their own equipment! Doesn't that just defeat the whole purpose? At least they list it on their products which is a good warning, I guess. I also have a rougher time of it with symptoms during the winter season, too, for some reason. Spring, summer, and fall, I am usually a lot better. Another weird situation that happens to me is: When I buy ground beef or other foods in the grocery store and go home and cook them, I end up having symptoms. However, if I go to a restaurant and order the same foods, I don't have any problems. Really beats the heck out of me! I definitely want to go get checked for my allergies asap, but don't have health insurance right now, unfortunately. I have a small business and its not going to pick up until around April or May, so I may have to wait a while. In the meantime, I will be reading all the posts on this board! Seems like Trader Joe's doesn't have much in the way of gluten/wheat-free foods. Is Whole Foods Market any better? I have been going to Railey's Grocery Outlet, where they seem to have a bit more variety. Thanks again very much!

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Thanks everyone for your input, I appreciate it very much! Looks like possibly a long road ahead. I'm already sick and tired of eating the same foods over and over. And some of the gluten-free foods are very expensive. Also, its strange how alot of the gluten/wheat free products actually say they are also contaminated by other foods on their own equipment! Doesn't that just defeat the whole purpose? At least they list it on their products which is a good warning, I guess. I also have a rougher time of it with symptoms during the winter season, too, for some reason. Spring, summer, and fall, I am usually a lot better. Another weird situation that happens to me is: When I buy ground beef or other foods in the grocery store and go home and cook them, I end up having symptoms. However, if I go to a restaurant and order the same foods, I don't have any problems. Really beats the heck out of me! I definitely want to go get checked for my allergies asap, but don't have health insurance right now, unfortunately. I have a small business and its not going to pick up until around April or May, so I may have to wait a while. In the meantime, I will be reading all the posts on this board! Seems like Trader Joe's doesn't have much in the way of gluten/wheat-free foods. Is Whole Foods Market any better? I have been going to Railey's Grocery Outlet, where they seem to have a bit more variety. Thanks again very much!

I don't live near a Trader Joe's but I checked their website and it lists many things that are gluten/wheat free. I plan to stop by one of their stores the next time I am in Chicago. I am glad that you found this website, and being new to the gluten free world I understand your pain. Good Luck!!

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I want to encourage you to continue your explorations about your food tolerances, as you seem to be doing. If I had known what the results would be from the allergy testing, I would NOT have done it. I learned so much more doing the eliminations on my own, and eventually became very sensitive to what I could and could not eat. I started with all grains, then moved on to all milk & dairy, then focused on the food additives that were causing me problems. Sometimes the food additives can cause just as much trouble as the actual foods. Reading labels becomes so important.

I agree with you about some foods from the markets--I used to love to eat beef, but then I started having breathing problems after eating it. I found that Mexican restaurants, and places like El Pollo Loco, Red Robin, Sizzler, and other large restaurants have a pretty wide selection of foods that I can tolerate on my meats, fruits & vegetables diet (chicken & salad or vegetables are pretty easy to find, it just comes down to being bold enough to make sure they are grilled or cooked without butter because of my milk intolerance, and I usually take along my own salad dressing and spices in a small bag). I realize I am getting more trusting, because I used to always take along a large bag of whatever I thought might not be available, or what might be safe, and I sometimes felt hesitant to let my wants be known. Today I just speak up and tell them what I need, and they are always more than eager to please. It's good to see how our personalities change with this condition, as well as our bodies. Always, Welda

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Breathing and sinus problems have been my worst symptoms the last few years. I've had undiagnosed celiac all my life.

In the past few years I've had so many sinus infections, even though my allergies are mild and the allergist did immune system testing and my immune system was really strong. She couldn't figure out why I was having constant sinus infections that often turned into bronchitis.

I've had WAY too many antibiotics over the years!

I came up negative to wheat on allergy testing, but if I eat whole wheat I have a very hard time breathing.

My asthma was flaring up since September and it was hard to control even with my asthma meds. Since I've gone gluten free my asthma has been so much better.

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About the allergy testing, the best thing to do is get skin testing and blood. Testing for food allergies can be difficult sometimes and you can come up negative but still have symptoms.

My mother in law is an allergist and she puts a lot of stock in elimination diets and food challenges. Some will say it's an intolerance if you come up negative on tests but have symptoms. She says that if a food makes someone sick she considers them allergic.

She feels like with an intolerance you still have to be very careful and act as if you are allergic. Also she says to limit or cut out foods you are intolerant to so it doesn't become a full blown allergy.

An allergy is a histamine response that can cause hives, itching, and even anaphylaxis. If you are not having a hystamine response then it can be an intolerance where your body isn't digesting it because it lacks enzymes or for other reasons. Celiac is autoimmune, where your body perceives gluten as a toxin and destroys your intestines to avoid absorbing the perceived toxin. Hope that helps to sum it up.

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Recently, I have been having some weird, sometimes scary, breathing problems related to gluten/wheat. I have been having symptoms off-and-on, being very hard to pinpoint which foods were doing this to me. The last few weeks, the symptoms have been getting closer and closer to the ingestion time of the food that it has caused me to think its gluten/wheat. Whats weird is that I don't have hardly any of the gastro-intestinal symptoms normally associated with the allergy. Lately, I was suffering from heart-burn and a slight unusual bloating from gluten foods, but nothing as harsh as it says on certain websites. The last few weeks, when I eat gluten and/or wheat:

1. - I will get a stuffy nose within 15-30 min. of ingesting the food

2. - After about another 30 - 45 min. my sinuses will open up a great deal. During this time, I may also feel like I am not breathing very well in my lungs and lung area.

3. - During the night (if I ate the food at dinner) I will have breathing problems, and on into the morning, keeping me awake. Sometimes my heart will race by itself.

4. - In the morning I will pretty much always have a bad headache.

I noticed that since I stopped eating gluten/wheat, all these symptoms have stopped. If I eat a product that says "shared with equipment that processes wheat/gluten" I will usually feel the same symptoms, although not as harsh.

I have been struggling with various problems with certain foods for a few years now, ever since I had Mononucleosis back in 2006. It took the doctors 3 months to diagnose the mono! When I was sick, I also started having problems when consuming certain foods. I told my doc, and he said "its not food allergies" but sent me to an allergist at my request. Then the allergist told me "You don't have food allergies" when I explained my symptoms to her. She told me she would test me, but the tests would take hours and hours and she was sure I didn't have allergies. So I left. I also went to a Kinesiologist/Chiropractor who told me he couldn't find any food allergy problems. I am at my wits end. My latest symptoms are the most harsh in a while that I have experienced. Any suggestions would be appreciated.

Hi, I too experience weird, scary breathing problems and a racing heart. I've had breathing problems for over 20 years, I went to the doctor who didn't know what was wrong and in the end my friend suggested I went to an allergy specialist who used a 'vega' machine to find out what foods I was allergic to. Although it took about 8 months to work out that I'm allergic to wheat, barley, barley malt extract, malt vinegar, I didn't get any breathing problems for a while, then one day I had some marmite and had another attack, so yeast and yeast extract was then eliminated from my diet!

The main time of day when I get the attacks is in the middle of the night. They are very frightening and as a consequence I can't breathe in or breathe out - as you can imagine I avoid all the above foods like the plague, but last night I had another attack and I think I might now be allergic to cider vinegar as that is what was contained in the salad dressing I ate and can't think what else it could have been amongst the ingredients. This problem really gets me down, but I take anti-histamine tablets sometimes as a precaution if I've been out to a restaurant for a meal (which isn't very often due to the long list of allergies!)

I would be interested if anyone else has had an experience like this and how you have coped?

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My son's whole entire childhood was one long asthma attack. Frequesntly with heart palpitations...either from the medications or from gluten...we really don't know. But I want to share that his asthma is totally and completely resolved since going gluten free one year ago. Fatigue and breathing problems kept him from functioning normally all of his childhood. At 16 I discovered I had Celiac by reading here and going gluten free. Then it was Dr. confirmed based on DH rash improving and "fibromyalgia" going away. For my son, his symptoms were totally different than mine so I never would have dreamed we had the same disease. His asthma cleared up within a few months being gluten free. The first gluten challenge of eating pizza landed him in the ER for a breathing treatment and steroids, but I knew it was from that gluten. Last year they came out with 3 studies of asthma being related to Celiac. My son was able to participate in sports this year and all of his "allergies" are gone. It is amazing. Tragic we didn't learn sooner, but amazing to be well. Be aware that vitamin D deficiency can cause severe asthma symptoms as well, and have your vitamin D checked. I hope you gain relief from being gluten free. Those studies are in the Celiac archives if you google asthma and Celiac you should find them. Good luck to you.

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