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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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    CAN GLUTEN IN ORTHODONTIC RETAINERS TRIGGER ONGOING CELIAC SYMPTOMS?


    Jefferson Adams

    Celiac.com 08/22/2014 - It is often hard to tell if isolated case reports have anything to contribute to the larger understanding of celiac disease. However, some case reports are enough in themselves to cause reflection, whatever their contribution to the larger scientific understanding may be.


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    Photo: Wikimedia Commons--clockfaceFor most people with celiac disease, symptoms disappear and healing begins with the adoption of a gluten-free diet. For one 9-year-old girl, however, the battle to beat her symptoms and feel better did not end with a gluten-free diet.

    The girl had initially complained of non-specific abdominal discomfort, and showed positive blood tests for celiac disease. Duodenal biopsies revealed Marsh 3B histopathology. So, she definitely had celiac disease with corresponding symptoms. Despite following a strict gluten-free diet, the girl continued to have symptoms and show positive blood tests for active disease.

    Gluten is a common additive in plastics. After some detective work, the team discovered that the child was being exposed to gluten from her orthodontic retainer that contained a plasticized methacrylate polymer.

    She discontinued its use and her symptoms disappeared and her celiac blood tests returned to normal.

    This case illustrates that, even for patients on the strictest gluten-free diet, exposure to non-dietary sources of gluten, such as those used to make plastics, dental equipment, and cosmetics, can trigger or exacerbate celiac disease symptoms. This case also emphasizes the importance of ferreting out and removing all possible sources of gluten, including non-dietary, when managing celiac disease.

    Source:


    Image Caption: Photo: Wikimedia Commons--clockface
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    Can you please provide more information on what to ask my doctor about this potential gluten containing mater? I think I have this issue, but my appliance is not optional.

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    I am in the dental field and heavily involved in research in materials in the dental field.

    It is my strong opinion, that the retainer has nothing to do with the celiac symptoms. Even if at one point of time, there was gluten in the resin (but there was not), it would be bound in the resin and there is no way that 20ppm (the upper limit of gluten in a substance to be safe) would go through the stomach and ever reach the small intestine. It is my strong opinion that the retainer was not the source of the problem. Something else was the problem and whatever it was, happened to coincide with the retainer. Anecdotal reports like these cause unnecessary fear.

    I can not post a link but I suggest to search the glutenfreedietician site and this topic is discussed there also.

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    Guest Donnie

    Posted

    I didn't know plastics could contain gluten. Does anyone know if plastic water bottles and food containers contain gluten? Such as: #1, 2, 4 and 5? I have to drink bottled spring water, that is in plastic gallon jugs.

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    Can you please provide more information on what to ask my doctor about this potential gluten containing mater? I think I have this issue, but my appliance is not optional.

    You should read "Do parents of children with celiac disease really have to worry that their children's retainers contain gluten?" by Amy Jones, MS, RD and Tricia Thompson, MS, RD, at the Gluten Free Dietitian.

     

    They conclude that the one case mentioned in this presentation gives insufficient data to draw definite conclusions or cause concerns for wearers of dental appliances.

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    Please do be more specific - if you know what types. I'm an adult but wear a retainer (only once a week). I've been gluten-free for 8 months and still do not feel good. Wondering if it is the retainer. My retainer does not look like the picture above but is more of a mouthpiece that a fighter might wear - clear plastic

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    Guest Amanda

    Posted

    Oh my goodness, this is scary! I wonder if this is why I'm still bothered sometimes when wearing my retainers... Like the above person noted, how can we find out what materials are used in the retainers?

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    Does anyone know where you can get retainers without plasticized methacrylate polymer?

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    Excellent article my son just got a retainer and I knew about the possible contamination from the product I informed my sons orthodontist I made sure from the lab that there was not any product in my sons material . I work in a GI office in buffalo

    NY and I feel I know more about the possibilities of cross contamination then the general public I wish people were more educated about this.

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    Guest MJ Billmann

    Posted

    I am in the dental field and heavily involved in research in materials in the dental field.

    It is my strong opinion, that the retainer has nothing to do with the celiac symptoms. Even if at one point of time, there was gluten in the resin (but there was not), it would be bound in the resin and there is no way that 20ppm (the upper limit of gluten in a substance to be safe) would go through the stomach and ever reach the small intestine. It is my strong opinion that the retainer was not the source of the problem. Something else was the problem and whatever it was, happened to coincide with the retainer. Anecdotal reports like these cause unnecessary fear.

    I can not post a link but I suggest to search the glutenfreedietician site and this topic is discussed there also.

    It's negative close-minded thinking like this that keep celiac disease cloaked in 'mystery'. Someday all pediatricians will test all children for gluten issues BEFORE they prescribe pharmaceuticals that merely mask symptoms.

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    Guest MJ Billmann

    Posted

    I didn't know plastics could contain gluten. Does anyone know if plastic water bottles and food containers contain gluten? Such as: #1, 2, 4 and 5? I have to drink bottled spring water, that is in plastic gallon jugs.

    Don't forget envelopes and many forms of glue.

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    I recently started wearing Nightguard. I contacted my dentist but it looks like she can only tell me that it is consistent of methyl methacrylate (which is if I am not mistaken the above mentioned plasticized methacrylate polymer) which can contain gluten. So I have to go to detect who is a manufacturer and can they answer me. Is anybody familiar with the exact manufacturers and products of that sort that contain gluten? I mean it is a whole range of all sorts of dental products and no one is giving names of where is this gluten present. And don't get me started on how much confusion all of these opposite opinions cause. At the end I really do not know what to make of it.

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    Guest Heather

    Posted

    Wow! POWERFUL KNOWLEDGE!!

    I now believe this gives me a thought of why my retainer "May" not have worked correctly. Most of all my parents are so upset to pay $400 for a piece of plastic!!

    That may also be a reason why my body disgusts the dentists...no idea why!

    NO PROBLEMS... WITH HOSPITAL EVEN ER!! I Usually need IV after IV cause they can

    never find my vein the first, second, sometimes, third or more times... so this could be

    a possible cause. THANKS FOR THE INFO!!!

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    For those with celiac and NSGS who have an issue with seaweed and seaweed products like carrageenan (red seaweed species) and now the alginates-sodium or calcium alginate/align/alginic acid (from kelp/kombu, brown seaweeds) the dental office can be a concern as many of the molds used contain seaweed substances.

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    I recently started wearing Nightguard. I contacted my dentist but it looks like she can only tell me that it is consistent of methyl methacrylate (which is if I am not mistaken the above mentioned plasticized methacrylate polymer) which can contain gluten. So I have to go to detect who is a manufacturer and can they answer me. Is anybody familiar with the exact manufacturers and products of that sort that contain gluten? I mean it is a whole range of all sorts of dental products and no one is giving names of where is this gluten present. And don't get me started on how much confusion all of these opposite opinions cause. At the end I really do not know what to make of it.

    Tanya- Did you or anyone ever get to the bottom of this? As I'm chipping my expensive dental work by grinding at night without wearing my nice custom made methyl plasticized methacrylate polymer night guard, I'm wondering if it is ascertained- as AI above says that any gluten in it would be -"bound in the resin" and unable to leach the 20ppm into your g.i. tract or not.

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    I am in the dental field and heavily involved in research in materials in the dental field.

    It is my strong opinion, that the retainer has nothing to do with the celiac symptoms. Even if at one point of time, there was gluten in the resin (but there was not), it would be bound in the resin and there is no way that 20ppm (the upper limit of gluten in a substance to be safe) would go through the stomach and ever reach the small intestine. It is my strong opinion that the retainer was not the source of the problem. Something else was the problem and whatever it was, happened to coincide with the retainer. Anecdotal reports like these cause unnecessary fear.

    I can not post a link but I suggest to search the glutenfreedietician site and this topic is discussed there also.

    Hello AI-

    I've been watching for more information about this article saying that my night guard could be a source of gluten contamination. My dentist can't find it. You said that you are in "dental field and heavily involved in research in materials in the dental field." Great! I am so glad you took the time to write a response. I take it you are a chemist or bio-chemist and you have links to studies about leaching of substances. So, what I want to know is if you are following this topic any further? One can perhaps conjecture that the girl might have been accidentally getting glutened from a grain or a baked good, incorrectly deemed 20/million gluten-free (although I've seen studies and inferences saying that is the top # and there are many Celiacs that have damage/reactions at lower parts/million.) I just wondered if you have made a study of how resins hold up in the mouth overnight and can shed any more light on this topic?

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    NO SYMPTOMS
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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
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    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.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    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