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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Severe Cough/rhinitis And Celiac Disease
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8 posts in this topic

Hey all, I'm new here and newly ID'd as a possible celiac disease'er. I am very happy to find some kindred souls on this forum. My celiac disease symptoms= "IBS" (diarrhea/bloating + loud growling tummy, intermittent anemia). I've also had issues with asthma, rhinitis, & severe cough since I was 13 or so. I grew to dread every cold because even simple viruses result in 4-6 weeks of uncontrollable coughing, gagging, vomiting, poor sleep, missed work, etc. I was dx'd by a pulmonologist two years ago with "hyperreactive airway disease". The hay fever/rhinitis/cough went from intermittent to continuous last April. I've tried it all-- antihistamines, inhalers, antitussives, steroids, antibiotics, breathing treatments-- nothing helps. I became "that girl who coughs". The cough was affecting my work performance and limiting my social life. I had to find out what was wrong or my goose was cooked. I went to an ENT, who saw no functional problem. An allergist was next on the list.

Then a girlfriend and I decided to go low-carb (no bread) for weight loss. Lo and behold, within 3 days my rhinitis & cough went away!!!~ I made the wheat allergy connection. I went gluten-free with much success-- after four weeks I am now sleeping flat thru the night like a normal person. I'm not vomiting into plastic bags while driving on the freeway. I'm putting off the dentist because it costs too much-- not because I can't lay back without coughing. I'm hiking, mountain biking, and hitting the gym again!

Questions for the Forum:

1) My allergist told me that respiratory symptoms (like cough & rhinitis) are atypical for Celiac Disease. But are they unheard of??? Otherwise I very much fit the picture for celiac disease.

2) My skin test for wheat allergy was negative-- does that rule out wheat allergy?

3) If so.... how come when I accidentally ate some wheat (in falafels), my gut bloated and I coughed all night?

4) I am awaiting the blood test antibody results for Celiac Disease. How much of a problem is it that I went gluten-free several weeks prior (my allergist says no problem).

5) Has anybody else had severe respiratory problems RESOLVE COMPLETELY after going gluten-free???

Thank you so much for your time,

Diana

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1) My daughter had persistent nasal and throat irritation prior to diagnosis. Her problems cleared up when going gluten-free and come back if she accidentally ingests gluten.

2) Wheat allergy is different than Celiac/gluten intolerance. Sounds like you don't have a wheat allergy, but certainly could be celiac or gluten intolerant, especially if your experience with the SB diet provided relief of many symptoms.

3) Because that is how your immune system reacts when you get "glutened." My daughter gets horrible stomach cramps and bloating and sinus irritation (among other things, but those are the most noticeable).

4) False negatives are common among celiac blood tests. The time off of gluten (depending on how strict you have been) may cause the result to be negative. Your next steps might be to request an endoscopy to see if there has been damage (blunting of villi) to your small intestine and/or continue with a gluten-free lifestyle (you don't need a doctor's permission) if it provides you relief. It just depends on how important a doctor's diagnosis is to you. It was important for me and our family to have a Dr. diganose our daughter's celiac disease, but looking back, I would probably be just as satisfied going gluten-free rather than getting the dx. She had a positive blood test and a positive biopsy with both a strong dietary response and decreased TTG levels after 3 months of complying with the diet.

5) Yes. My daughter's have resolved completely. Her sinuses do flare up with accidental glutenings, though, and it does make her prone to other infections like strep and such if her immune system is suppressed for any length of time (which happens when she is glutened). Many of her symptoms I would have considered mild or atypical when she was diagnosed. I didn't even know what Celiac was until the GI mentioned it as a possibility just after her endoscopy.

Hope that helps. Best of luck with your gluten-free journey!

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Your tests will not be accurate since you went gluten free. I suggest you do Enterolabs stool testing. You can be gluten free for this. But, obviously you are at least gluten intolerant since you eliminated and then ate it and had a reaction. Gluten intolerance can destroy your body as much as Celiac.

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But, obviously you are at least gluten intolerant since you eliminated and then ate it and had a reaction. Gluten intolerance can destroy your body as much as Celiac.

Please forgive my ignorance-- but how does "gluten intolerance" differ from celiac disease and wheat allergy?

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I believe wheat allergy, like other allergies, involves a histamine reaction.

Celiac disease and gluten intolerance, by contrast, are autoimmune responses: your immune system reacts to the gluten by attacking YOU (thyroid, pancreas, gut, brain, skin, etc.).

THere is much argument over the dividing line between celiac disease and gluten intolerance. Possibly, the only difference might be what stage the gluten intolerance is: gluten intolerance, in many (but possibly not all) cases is simply early-stage celiac. If you have gluten intolerance and you keep eating gluten, eventually, you will damage your villi, which results in a positive diagnosis for celiac disease. However, many people believe that there are situations that seem to be able to CAUSE a non-celiac gluten intolerance; these situation include (but are not limited to) mercury toxicity and Lyme Disease.

Many people think that genetic testing is the answer; however, people who do NOT possess the currently recognized "celiac genes" have been know to have positive biopsies for celiac and/or dermatitis herpetiformis, both of which are considered incontrovertible evidence of celiac disease.

It doesn't really matter what you call it; either way, you can't eat gluten! (If it walks like a duck, talks like a duck, poops like a duck... :) )

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To those who replied-- thank you so much for your responses, and for helping to clear up some confusing issues. It will be interesting to see my blood test results. Regardless, no way will I eat gluten again on purpose. I feel so much better without it and the cough/rhinitis seems to be history. :D I would still love to hear from anyone who has cough/rhinitis as their major symptom.

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I just discovered this website as I was looking for a possible link between celiac disease and rhinitis. It seems other people with celiac are also experiencing nasal and sinus problems. I have been gluten free for about three years but my rhinitis has not improved. The doctors say it is vasomotor rhinitis which basically means it is non-bacterial and non-viral but a hypersensitivity in the nasal mucous membranes. It is very annoying and I have not found anything that gives me relief although I have not tried pharmaceuticals as I tend to stay away from them. Plan to keep looking and will certainly share the information if I find anything.

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Ditto, Lady Baba!

My elderly father has been suffering with a non-stop runny nose, as you have, for several years now. It seems to be aggravated by eating and exertion. In addition to the annoyance of having a drippy faucet in the middle of his face, I think the gunk that's constantly running down his throat is causing him to gag and spit up. Poor guy. Poor you, too!

We cannot find the source and we're having no luck finding a medication that works -- it's just as well you've resisted using them: Dad has high blood pressure, so antihistimines are out; NasalCrom, which is supposed to relieve vasomotor rhinitis doesn't seem to help at all; Fluconase for sinusitis seems to help only verrry slightly.

From some of the posts, it seems that gluten intolerance is a possibility. I'll keep him off gluten and see how it goes.

In case it doesn't help him...

Have you discovered the source of your rhinitis?

Have you found any relief?

Thanks! Hope you've found some relief!

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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