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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Kyalesyin

Really, Really Foul Breath Post-glutening?

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My wife glutened herself a few weeks back, and about two days after she did it, she developed the most foul case of halitosis. I mean, to the stage of me having to lie with my back to her [we normally sleep holding hands.]

Trying to describe the smell is hard. Part dead roadkill, part super dark chocolate, part really bitter keytones. Kind of stale alcohol smelling. Am I making any sense? It went away after about four days. I didn't think to mention it at the time, until I realised that she had it all the time before she went gluten-free, and it was always worse after a big wheat-based meal. She can't ever smell it, but other people have commented on it before.

Anyone else get this, or is this another one of those random ones?

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That does sound exactly like the smell of a person's breath when they have ketones present in their blood. I've been a tightly controlled type one diabetic for a long time, so I haven't given off that smell in ages. But fermenting wine, rotten fruit, sour milk...these were the things that I've always heard "ketone breath" described like. Your wife doesn't have blood sugar issues?

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That does sound exactly like the smell of a person's breath when they have ketones present in their blood. I've been a tightly controlled type one diabetic for a long time, so I haven't given off that smell in ages. But fermenting wine, rotten fruit, sour milk...these were the things that I've always heard "ketone breath" described like. Your wife doesn't have blood sugar issues?

Nope, at least, I hope not. Its not quite the diabetic smell. At least, she smells nothing like my sisters and my grandparents did. They always smelled much sweeter. My chemistry proffessor suggested that its the smell of her stomach lining breaking down from the gluten damage, which is a chilling thought...

But we had all the diabetes tests while they were trying to convince us it wasn't celiac, and we eat well enough that she doesn't ever run on empty, so hopefully that isn't the case. It only ever pops up when she glutens herself, normally one to two days after. At least if it is blood sugar we'll have something in common...

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I have had a problem with bad breath for years, and yes, I believe it is associated with "gluten". I hope your wife is feeling better and no longer has this problem.

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Guest Chrisbee

I noticed this a long time ago when my oldest children were small before I knew about Celiac disease. Their breath would smell like a more sweet version of finger nail polish remover to me. I asked the doctor about it one time because I was worried and he had the nerve to ask me if I left the polish remover out where they could reach it. He couldn't smell it. I never did find out what caused it, but I can always tell by the smell of their breath if they aren't feeling well.

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I came across this thread doing a search for "breath" because my siser, who I believe has celiac and is currently going gluten-free, has the most awful breath. It smells "infected" -- that's the only word I can think of to describe it. If she's sitting next to me, or even across the table from me, talking, I can barely stand it. I've never mentioned it to her because she is very, very sensitive/defensive about things like this, and I figured if her three teenaged kids haven't told her by now I wasn't about to!

I think she has celiac because she is hypo-thyroid, is prone to D, and has had unexplained infertility, constant migraines and a rash that no doctor has identified but looks exactly like DH. And she's feeling much better after going gluten-free for a few weeks.

I have a cold so I haven't been able to smell much lately, but it will be interesting to see if her breath improves on the diet.

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he had the nerve to ask me if I left the polish remover out where they could reach it.

Just had to say--WHAT AN MORON!

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WOW! I have been told by my sister and mom quite a few time and my husband that my breath stinks and I can brush and you can smell my breath again within a few hours. Never thought that this was an issue of celiac disease but it makes sense, I have always battled with this issue. WoW the more I read on here the more makes sense and all the pieces are all falling into pieces.

Thanks

Donna

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many times they told me in my famuily I had bad breath. Now I dont hear it that much since I am on this glutenfree diet. I wonder...

Geo

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I was under the impression this had to do with systemic candida, and after you get the candida under control (killing it off) your breath gets sweet and you don't have that odd body odor anymore. B)

Love Love

sickchick

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I came to this site to see if inhaling flour could make me feel bad- I'm new to this celiac thing but feeling better- and this topic jumped out at me. My mother, myself and my son have always had terrible breath. I had my tonsils out and that seemed to help but when my son had his out it didn't help him at all. Even the breath from his nose smells really bad. In the few days since I've been diagnosed I've seen so many symptoms in my son and this is just another confirmation to me that he has celiac disease also. I wish we'd figured this out when he was little instead of now. Do those of you that have noticed this phenomenon also notice a unique, maple-y sort of urine-y smell to body odor also?

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My fiance notice my breath was pretty horrid a while ago. My primary told me to take pepcid because it was due to stress (from planning a wedding and buying a new home). But now that i've been gluten free again, he did say that it was getting better.

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Well now, I find this very interesting. Somehow I got gluten in my diet ( have been gluten free for 10 years)I was visiting my son, and he told me I had cronic bad breath. I went to the store and got a toung scraper and that helped. However when I got home from my visit I really put my diet in check and I havent had a problem since that I know of. I am interested in the candida...If you have read Dr. Crooks book The Yeast Connection you will find that it is very possibly true about the breath. Yeast is a problem that should be looked at. This is an excellant book for those who work with Autism too as Autistics have a hard time throwing off toxins in the body.

Oli

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My sister deals with bad breath very often. I think she might be allergic to gluten, it doesn't run in the family. She got Candida 17 years ago when she was pregnant. It only bothers her a little every few years. I say all that to say this weird experience she had a few months back.

She was talking to a neighbor and there were flying insects all around her face but not the neighbors. She asked if it could be a symptom...sounds like it. Weird and embarassing!

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My breath has stunk when I was glutened but it was from puking. Not really sure but the it might happen to some people and the diabetic thing is def. something you guys should look into. <_<

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I had bad breath, gas, and bloating my entire life. I was recently diagnosed with celiac disease through a biopsy done via endoscopy. My friends described my breath as "warm garbage". I have been gluten free for a little over a month now and only had a bad breath comment once about 10 hours after eating a raw clove of garlic. The gas and bloating are still there, but I think that is because I eat too fast.

Back in the day, I took PrevPac (a triple therapy anti-biotic typically used to treat H. Pylori) which cured my bad breath. If you suffer from really bad breath that you think may be GI related, then I'd definitely recommend the PrevPak treatment first, and if that doesnt work then try the gluten-free diet...

Hope that helps,

-Dave

keywords: celiac disease, gluten-free, halitosis, bad breath, foul breath, helicobacter pylori, h pylori, h. pylori, gas, bloating, smelly breath

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Adding to the chorus, I recently discovered I had celiac disease, my poor wife was putting up with my breath for years, but since i removed gluten its relatively gone. I also thought it was stress related, but no matter what I did to help I had no relief. Sort of fermented dead mouse smell....pretty bad. :ph34r:

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Understand this is a very old topic but as a gluten-free newbie just started the gluten-free diet literally two days ago.

When noticed bad breath voila - disappeared without effort!

gluten-free diet only change so in my curiosity searched this topic online and found this thread. Personally have had chronically bad breath my entire life not related to dental health as confirmed by my dentist but have apparently had undiagnosed Celiac for at least 14 years maybe even earlier so there is a connection somehow.

Just so happened to eat garlic within the last two days so that was the only time my breath smelled. It was clearly a garlic smell not the normal sweet rotting meat smell as previously mentioned before by someone else.

Thankful found out about celiac disease as somebody just switched the light bulb on clearly illuminating answers to all my health problems that I've suffered with for years!

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One of my children has the really, really bad breath following gluten exposure. It is one of the ways that I monitor how we are doing with our diet. It is a distinct odor, for sure, and I would love to better understand exactly what that odor is. In the meantime, when I smell that dank breath, I know that we better review what she ate the day before. I find the odor most noticeable upon her waking. There is definitely a different "morning breath" for her if she has had gluten exposure. I have wondered if it was related to post nasal drip issues or something . . . but I haven't figured it out yet! But, in my experience, it can be a great way to help monitor dietary issues for our loved ones!

I haven't asked my husband if I have the issue . . . I don't know if I would want to know for myself. :unsure:

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This is an old post... It was before my daughter was diagnosed with eosinophilic esophagitus. Her breath smelled really bad. She would also have speckled tonsils that looked like strep.

Gluten can be a trigger for eosinophils.

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Yes, I've had breath issues for years. Very embarrassing! This morning I woke up with dank breath and I knew I ate something with gluten in it. Years ago when talking with me people would take a step back. Now, not so much. sometimes I think that dead smell is cancer within my gut..rotting away. Of course, I hope not but I spent too many years not knowing what is wrong with me. I think the damage has already been done.

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I've struggled with this too but since going gluten-free it has gone away. So has much of my snoring :rolleyes:

Gluten can be a trigger for eosinophils.

I'd love to know more! Do you have a link or resource? My blood work keeps showing elevated eosinophils so my docs ordered an endoscopy and colonoscopy, neither of which I'm looking forward to. Though I'll be happy to have some answers.

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My son always had the most horrible breath, primarily first thing in the morning (or if I got a whiff while he was sleeping.) After we took him off gluten, his breath became very pleasant. One way I can tell for sure he's been glutened is his breath gets awful again. To me it smells like stale poo.

I figured it had to do with inflammation in his gut giving off gases, and also the bad bacteria proliferating in his mouth (we came to gluten-free because of his tooth decay.)

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My husband has had foul breath for years, and it is not a dental problem. I do not have diabetes, but I know the odor of a diabetic, and this is not the same as a diabetic.....it is a very foul, rotting corpse type odor...it comes and goes, and interestingly enough, his adult son has the same problem. One product that seems to help immensely, is a product called Thera-Breath, by Dr. Harold Katz. I think it is available at Walgreens and Walmart...or at least one of those stores.It has helped immensely.I'm sure the odor is food related, or gut bacteria related, because he used to have the problem for days, even a week, and then it would disappear. It was so bad I hesitated to marry him, and had to tell him of the problem.

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In addition to eating gluten-free, I attribute the following to knocking out my bad breath once and for all:

1. SmartMouth Activated Mouthwash (this is what really did it for me!)

2. Flonase Nasal Spray

3. Dr. Tung's Tongue Scraper

4. The obviously brushing and flossing twice daily (goes without saying).

 

 

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
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    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

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    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
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    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
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    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
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    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
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    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
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    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center