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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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    GENERAL MILLS DRAWS FIRE FOR GLUTEN-FREE MANUFACTURING CHOICES


    Jefferson Adams

    Celiac.com 09/07/2015 - Cereal maker General Mills is facing criticism from some people with celiac disease who say its gluten-free manufacturing practices are unsafe, unreliable, and leave them at risk for adverse gluten reactions.


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    Image: CC--theimpulsivebuyA number of celiac disease patients and others with gluten sensitivities are questioning the company's practice of removing wheat, rye and barley from standard oats, rather than sourcing actual gluten-free oats. General Mills' special method for sorting grains allegedly removes any wheat, barley and rye from the whole oats, before they are made into oat flour.

    A group called "Gluten Free Watchdog" has engaged General Mills regarding cross-contamination possibilities during the grain sorting and manufacturing process. The process used by General Mills to sort its oats for the gluten-free Original, Multi-Grain, Apple Cinnamon, Honey Nut and Frosted Cheerios is described in an official blog post.

    Gluten Free Watchdog's concerns include the reliability of testing analysis. General Mills currently uses a sampling method to test the cereal and check that gluten is 20 parts per million (ppm) or less, but Gluten Free Watchdog claims this method can result in uneven results, and that some batches of cereal may actually contain more than the allowed 20 ppm of gluten, although they haven't offered any solid examples that support their theory.

    To its credit, General Mills seems to be honestly engaged in the discussion, and has signaled an openness to sourcing pure gluten-free oats, which would address the concerns of groups like Gluten Free Watchdog.

    What do you think? Should General Mills be using gluten-free oats for their gluten-free products? Is it okay if they use regular oats and special sorting equipment to ensure the final oats are under 20 ppm, as required by law? Share your thoughts below.


    Image Caption: Image: CC--theimpulsivebuy
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    All I know is that I have celiac, and am quite sensitive to cross contamination. I ate some of these Cheerios this morning and loved them...no reaction...no problem. I was thrilled.

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    Guest Chocominties

    Posted

    Let me tell you, I was SO EXCITED when they first came out that I went and bought yellow box Cheerios and Honey Nut. I started with the yellow box (my favorite), but started to notice some GI upset setting in several hours after eating the cereal. I gave the benefit of the doubt that "maybe it was something else" that made me feel sick, and stopped eating the cereal so that I wouldn't be sick before a weekend trip that included a long drive.

     

    Monday I came back and ate a big bowl of Cheerios, and one week later I'm still feeling the effects. I don't think there's tons of gluten in there, but there's enough to disturb my GI tract for a long time without making it bleed (my usual "bad" reaction).

     

    To say I'm disappointed is an understatement. I wish they would use certified oats, or test smaller batches or SOMETHING.

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    I'm glad you posted this article. I was thinking of trying the new gluten free Cheerios but after hearing that they separate the wheat and barley from the oats to make their product I definitely will not. This does not meet my definition of gluten free for celiacs. I see a large possibility for error. They need oats that are gluten free from the field to the product.

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    I think that General Mills needs to be careful. Celiacs like myself would love to dig into a bowl of Cheerios, as long as it was a for sure a Gluten Free product. Step it up GM and get gluten-free oats and make everyone happy!

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    Guest Barbara

    Posted

    I have celiac disease and became very sick after eating this cereal. I will never buy or eat it again.

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    I think that General Mills needs to be careful. Celiacs like myself would love to dig into a bowl of Cheerios, as long as it was a for sure a Gluten Free product. Step it up GM and get gluten-free oats and make everyone happy!

    As far as Celiac.com knows, their gluten-free Cheerios have never tested above 20ppm, and are gluten-free. If anyone can point us to objective tests showing higher levels, please let us know.

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    My daughter ate the Honey Nut Cheerios, and she developed a rash (which she gets from eating gluten) all over her legs. I don't think it's actually gluten free.

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    Guest Sandy Skrovan

    Posted

    I was so excited to hear about General Mills making Cheerios gluten free. My daughter ran out and bought two boxes of original and one Honey Nuts. I questioned GM's process when I reviewed its website and back of box. So rather than dive right in, I tried about 6-7 Cheerios (like a toddler!) in the evening and experienced GI issues all night long (I am a celiac). Thankfully my taste test was rather limited so I was able to "sleep off" most of the symptoms. Needless to say, Cheerios got shelved in my household. Fellow celiacs, please be warned!

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    I was so excited to hear about General Mills making Cheerios gluten free. My daughter ran out and bought two boxes of original and one Honey Nuts. I questioned GM's process when I reviewed its website and back of box. So rather than dive right in, I tried about 6-7 Cheerios (like a toddler!) in the evening and experienced GI issues all night long (I am a celiac). Thankfully my taste test was rather limited so I was able to "sleep off" most of the symptoms. Needless to say, Cheerios got shelved in my household. Fellow celiacs, please be warned!

    This type of "gut test" isn't a valid way to detect gluten. It is widely known that some celiacs have an oat intolerance, which is separate to their reaction to gluten. Please let Celiac.com know if you test them and the results are over 20 ppm--all else is just spreading rumors.

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    Was so excited about the prospects of eating those childhood cereals once again. But hearing the news, and reading the previous reviews who have had reactions, I will wait until their process is sorted out. They are large enough they could afford to purchae the gluten-free oats for their product.

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    I am extremely sensitive. I ate the Honey nut cheerios and I didn't have any reaction. I love the cereal but yes I think they should be very cautious because the make gluten cereal also and I don't want any cross contamination in my cereal.

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    I am extremely sensitive. I ate the Honey nut cheerios and I didn't have any reaction. I love the cereal but yes I think they should be very cautious because the make gluten cereal also and I don't want any cross contamination in my cereal.

    By nature very large, publicly traded companies must be far more cautious than small companies. This is due to greater liability concerns that come from having deeper pockets. General Mills is not a risk taking company by any stretch.

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    When I went to buy the new cereal my store still had the "old" still in stock. This could have happened to those with a reaction?

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    Guest GlutenFreeG

    Posted

    We all know that celiacs are different and take on different risks. Many celiacs cheat eating gluten and if you're a celiac trusting this product regularly, then eat it and report back after multiple occasions after getting re-tested by your doctor. The facts are simple, General Mills does not conduct a proper celiac safe consistent protocol. They've been somewhat transparent to show us this. So how can a celiac honestly believe this, besides having an emotional attachment to the brand and food from their childhoods? Not to mention General Mill supports GMO and Monsanto another issue that is related indirectly to a trust gluten free lifestyle... why would you eat gluten free low quality food?

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    As long as General Mills is being honest (and I think they are) about their process, it is up to each celiac to decide for themselves if he or she should try gluten-free cherrios. My understanding is that there aren't enough gluten-free oats available and if there were I am sure that the cost would go up. I eat this Cherrios all the time and don't seem to have a problem.

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    They have been providing us with gluten free cereal for quite awhile. I eat all the Chex and I even make my own breading from the Rice Chex. Here's a company trying to do something that helps celiacs by offering choices and reasonable pricing. Let's all get on them about how they are doing it - then they can back off because they really don't need to provide gluten-free, do they ??

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    Our family (with both "celiacs" and non-celiac gluten-sensitive types) tends to be super-sensitive to gluten, but we'been thrilled to have Cheerios back in our diet. We've eaten each type and had no problems. Very excited to have a few more choices in the morning, and we really appreciate all GM's efforts to do this roll out safely!

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    You couldn't pay me to eat it. There are plenty of really good Organic Gluten Free cereals out there that you can trust. I wouldn't purchase from any company that also wants to hide GMO's from you too.

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    We all know that celiacs are different and take on different risks. Many celiacs cheat eating gluten and if you're a celiac trusting this product regularly, then eat it and report back after multiple occasions after getting re-tested by your doctor. The facts are simple, General Mills does not conduct a proper celiac safe consistent protocol. They've been somewhat transparent to show us this. So how can a celiac honestly believe this, besides having an emotional attachment to the brand and food from their childhoods? Not to mention General Mill supports GMO and Monsanto another issue that is related indirectly to a trust gluten free lifestyle... why would you eat gluten free low quality food?

     

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    When I went to buy the new cereal my store still had the "old" still in stock. This could have happened to those with a reaction?

    I was wondering about that! I still haven't seen the gluten-free products in Los Angeles yet....I can't wait to try them. I have never had an issue with oats, so I'm hoping this can be my new go-to cereal. I really, really hope people aren't assuming that the product is gluten-free without buying specifically the boxes that are labeled gluten-free! But hey, we all know the Darwin Effect exists....

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    I was so excited to hear that I would be able to eat honey nut and apple cinnamon cheerios again - they were my favorite for a long time. But after hearing more about their "removal process" I'm going to hold out until they develop a more reliable way to make Cheerios gluten free. All it takes is one missed grain to make someone sick. C'mon GM, stop dragging your feet and get some certified gluten-free oats. This "removal" process sounds like the beers who claim to be gluten free by fermentation just so they can jump on the band wagon and cash in on the fad dieters. If you are serious, get certified. Then I will trust you.

     

    Sincerely,

     

    A lifelong Celiac

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    I have Celiac disease, and I was SO EXCITED, I hadn't had Cheerios in over 10 years. I ate the frosted Cheerios... A BIG bowl of course! With in 15 minutes I was extremely sick! My stomach was swollen, I looked like I was 8 months pregnant and had severe pain cramping for days. Weeks later, I'm still dealing with muscle and nerve pain. If you have celiac disease, please use extreme caution if you decide to eat Cheerios! I hope General Mills will reconsider where they get their oats, and how they process them!! If not, please take gluten free off the label! Some boxes may be in the safe range, but apparently not every box is safe!

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    It's a disgrace, I got sick from one bowl of Cheerios plain! You think a huge company like GM would use gluten free oats and celiac standards , I think gluten will vary box to box, my heart breaks for the young kids that might get sick! They just want to be healthy kids and enjoy them without worries!!

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    Guest Fern Walter

    Posted

    I am a celiac and get sick for a month when glutened. I tried the gluten-free regular Cheerios before I read this article and and glad to say that I am still going strong. The box is half empty and on my next shopping trip plan to buy more. I am able to eat oats with out any problems, fortunately, cause I also have to eat gluten-free matzoh on Passover. But knowing that the oats may be contaminated does concern me. I hope they do go with pure oats cause I would hate to loose a month of my life eating my favorite cereal.

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    Guest Fern Walter

    Posted

    You couldn't pay me to eat it. There are plenty of really good Organic Gluten Free cereals out there that you can trust. I wouldn't purchase from any company that also wants to hide GMO's from you too.

    Don't worry no one will pay you to eat the cereal. And I have not found one Organic gluten-free cereals that I like even remotely. Yuck. I have tried too many to count. Glutino's is the worst for cereal. Then it goes downhill from there but glad someone likes them.

     

    General Mills is a brand I trust. I eat the Chex cereals all the time. I think they will get with the program and change they way they do the oats as well has hiding the GMO's if that is ur issue. Gook Luck.

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    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. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    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
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    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.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    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. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    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