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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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beksmom

Airborne Wheat

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It is Saturday June12, 2010. I have been in and out of the hospital for four days with severe hives and back to back anaflactic reactions. Ive been put on high doses of prendisone, benedryl, my potassium is low so they put me on klor- con 10 mg. ive had to use an epi pen once already and theyve had to give me it twice at the hospital. Being that i have taken all wheat out of my diet can this be a new serious problem to be resolved due to airborne wheat grass. anyone please help/advise.

thank you

beksmom

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Why do you think of air borne wheat? Where is it coming from? Any thoughts from the doc's on what is causing the allergic type reaction? Not doubting you, just trying to help you investigate.

Also, if you dont't mind - where do you live ? And is it city, suburb, country?

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Why do you think of air borne wheat? Where is it coming from? Any thoughts from the doc's on what is causing the allergic type reaction? Not doubting you, just trying to help you investigate.

Also, if you dont't mind - where do you live ? And is it city, suburb, country?

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I live in Mt Shasta, CA Its Northern California about 2hours from the Oregon border. I was thinking airborne because i have been gluten free since December and i'm thinking maybe now that i'm not ingesting wheat maybe my body doesn't have it in my system to resist it in the air??? i really don't know i'm just starting to get scared nothing has changed in my home enviroment and have not changed soaps or cleaners?

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I am wondering if you have ever had other allergies in your life, not just to foods but to pollens, cats, whatever??? Not saying that it is caused by anything like this but some people are more predisposed to a massive histamine response than others. It could be that you have built up an intolerance to something else, something that has never bothered you before.

As an example, I have never been bothered by the pine pollen at Lake Tahoe which is very heavy over the summer. Last year was especially bad and for the first time I started sneezing and couldn't stop. And the pine pollen is supposed to be too large to cause that kind of response :( . I hope I don't do it again this year. Also, the first few times I was exposed to poison oak I had no problems, but by the time I left California I was afraid to go outdoors in the summer, but not to worry, my cat used to bring it in to me :lol: I have also become intolerant to other foods as you will see from my signature as the months of gluten free have gone by. Certainly not to the point of anaphylaxis but to a very distressing degree nevertheless, so it is possible for this to happen. Some of the things like the citrus, it was obvious that I had just been eating too much of it, but the recent problem is legumes of all kinds, even green peas and beans, which I have eaten all my life without problem.

So I am suspecting that it might be another food intolerance that is getting you big time!! Have you been eating a lot of, say, corn, or something else like that? Or have you had a different kind of gluten free flour in a bread mix?? Just thoughts thrown out there. I know how frightening this must be for you and I hope that you and your doctors can pinpoint what is causing it.

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That is a good point i will ask my doctor to run a panel on food allergies since i've totally changed to 100 percent gluten free maybe i am over exposing myself to an ingredient that i now am allergic to. Who Knows ? But it certainly wont hurt. If you come up with any other thoughts please let me know.. Have you ever heard of anyone with airborne issues ? Or is that a far fetched possibility? They also said they cant do skin testing for airborne allergies until this episode ends, otherwise i can stop breathing right now, its too dangerous during the flare up.

Once again , thank you soooooo much for giving me some directions to go in and giving me hope,

Beksmom

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Well, springtime is a notorious allergy season for anything that blooms and produce pollens in spring. I would doubt that it would be wheat because harvest season is surely not upon you yet when wheat could be flying in the air. Do they grow wheat in the Shasta region? What else grows nearby you that could be producing allergens at this time of year??

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This is some sort of allergic reaction you are having to something that you have come in contact with or eaten or drank.

Ask yourself what is different.

Medications, food, topical lotions, etc.

Insecticides, too.

Before I went off wheat and gluten I was hypersensitive to a lot of things, especially cosmetics like shampoos, now, not so much, except I welt up when I handle certain types of hay, so I wear long sleeves and I rinse my arms off immediately afterwards. We have one horse who is allergic to one kind of hay, the kind that he can eat, that does not contain this in the mix, I am allergic to. But I can go from just starting to turn pink to it immediately going away just by washing it, the reaction goes as fast as it starts. I petted the dog today, who had been outside, and my wrist got one welt, I immediately washed it and five minutes later it was gone. There is some kind of dry summer pasture weed coming up that I react to big time, just starting to make its move, I can smell the stuff outside now. It is a very sticky plant, that blooms in the fall. I have another horse who reacts to this stuff, too, I have been trying to find the botanical name.

The other type of reaction I've had where I had to go to the prednisone / massive amounts of benedryl route is to poison oak, to which I am hyper hyper sensitive. The last time I managed to pick it up while doing a fence repair, and then it spread to places you can't imagine- I had it on my face and eyelids, too. It took over a month to get over it, and my skin didn't really react normally to anything for several more months.

I've also gotten it from the dogs. We ended up making the one dog an outside on the enclosed porch dog at night because of this because she gets into it more than the others. You can also pick this up from burning brush, the smoke will spread it. DO NOT BURN POISON OAK you can die from breathing the smoke fumes.

Gluten does not typically cause this sort of reaction, and you probably are allergic to something else, which I hope you figure out.

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I asked where you live because of the different types of pollen. Here around now or in the next few weeks, corn pollen can be big in the air. I know a few people that have problems with it. When I lived in Sacramento but worked up in Placerville, pine pollen was big. I know it bothered people and my dog. You might email the local TV weatherman and see if he can tell you what has been heavy in the air. The ones here keep track of and report that.

Any bug bites? Maybe you are having a reaction.

It really sounds like an allergic reaction and allergies can develop or go away over time.

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I am sensitive to airborne gluten. I got very sick when I accidentally breathed in some flour when I threw mine out. The other day I went biking in the country and got worried when I saw farmers turning over their fields, maybe winter wheat? I was fine. I am much more sensitive to trace gluten in food. Unless you have some obvious source of airborne gluten, like you work in a bakery or something, I would look first at what you are eating. Also what you might be eating by accident in terms of lotions, shampoos etc.

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Sounds like everyone has given you some good leads in solving this, so happy about that. Like many on this forum, I know what it's like, how scary it is to have something going on in your body that you just can't figure out, so I'll be sending strong positive thoughts your way. Please write and let everyone know when you are better.

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Please find a good allergist and get there as soon as you possibly can!

Anaphylacic type allergens can be identified really easily with skin tests, and you don't want to try to diagnose a life-threatening allergy without help. You can't assume this is wheat. Your body may have changed since you went gluten-free and you'll need a full allergy panel to figure out what you're reacting to.

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I just want to thank all my friends hee on this forum for throwing out your advice and giving me some directions to try. I love you all and will be keeping you posted as tests are done.

God Bless!

Beksmom

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I just want to thank all my friends hee on this forum for throwing out your advice and giving me some directions to try. I love you all and will be keeping you posted as tests are done.

God Bless!

Beksmom

Yes, please keep us posted. We are extremely nosy and love the gory details. ;). (OK, that's a joke). Hope you get some help soon.

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I just want to thank all my friends hee on this forum for throwing out your advice and giving me some directions to try. I love you all and will be keeping you posted as tests are done.

God Bless!

Beksmom

God Bless! I hope you get some answers before you get sick again. Good luck.

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Just wanted to assure folks with celiac that the reaction you're reading about in this post is an allergic reaction, not a celiac one. That doesn't make it any less scary for beksmom, but the vast majority of us don't have to worry about going into shock.

richard

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Just noticed this thread air born, i was wondering,i do metal detecting which is in farmers fields of all different crops after being harvested, will it affect me ???? gosh another thing to worry about.

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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.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    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. 

    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
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    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)?
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    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.
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    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
    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

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com

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    • Hi Claire, I haven't been on these boards much lately, but I just happened to see your message and wanted to follow up on my original post above (from 2013).  My daughter was indeed diagnosed with celiac a couple weeks after that post, right around her fourth birthday. She had high positives for every test on the panel, and the diagnosis was confirmed by biopsy. It took quite a while for her tTG to completely normalize, but she's been doing great for the past few years. I have no doubt whatsoever that she would have diagnosed much sooner if anyone had tested her. (I also ended up with an official celiac diagnosis from a GI myself, although my case was less clear-cut and involved a miserable gluten challenge.) The interesting development now is that my daughter's tTG started to rise again last year. It had been a very low negative for two years, then rose steadily until it was just below the positive level again. She also started getting mouth sores and tiny bumps on the back of her arms again, which had gone away shortly after her diagnosis. We never eat out, have little processed food, make sure that all grain products are from a dedicated gluten-free facility, and check all toiletries too. I was baffled once again. And I felt fine myself, so I didn't think that we'd had any contaminated food. The only major change had been that my daughter had started putting milk in her cereal! She'd always preferred it dry before, and was eating the same cereal that she'd been tolerating fine for years. She is not lactose intolerant and doesn't really have digestive symptoms from milk, but it has always made her incredibly irritable so she never got in the habit of drinking milk or eating much dairy. We do have cheese a couple times a week, and I never worried about small amounts of dairy in baked goods and whatnot, but she didn't typically have dairy on a daily basis until last year.  Then I found this recent article on PubMed, about cow's milk raising tTG in some celiacs: https://www.ncbi.nlm.nih.gov/pubmed/29555204 I know this isn't quite what you were asking about, but I found it fascinating. My daughter stopped having milk in cereal a few weeks ago, and her mouth sores and arm bumps went away again. She has a tTG test schedule for next month. If milk is the culprit, I'd expect it be headed downward again by then. Anyhow, I was thrilled to see research on this, and I hope there will be more info coming along about non-lactose-intolerance milk-related problems in celiacs soon!
    • I still would not touch it....its bloody wheat and my body thinks the stuff is poison/foreign invaders.
      Corn..I have a bad corn allergy, gotten worse over the years...used to be only consumed forms...but I notice it reacts to skin contact now. I know corn syrup will give me a rash/itchy skin, happens with soda spills and secondary contact....On the other hand sometimes something with maltodextrin or modified food starch from corn has not triggered a reaction and some times does.
    • https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

      Dairy is a very common issue with celiac disease, the issue is with the enzyme to break it down damaged intestines/villi unable to work with it. I have been lactose intolerant for over a decade and even developed a whey allergy 3-4 years ago. Food sensitives are very common also, they sort of roll in and roll out some lasting weeks, some life. Keep a food diary, record what you eat and symptoms with times. Record how you cook food, season it, etc. There are other things that can come and go and can even be secondary conditions that develop.
      https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Why in the world are you discounting the positive tTG-IgG? That is positive. it only takes 1 positive to move to an endoscopic biopsy. The finding of tTG IgG antibodies may indicate a diagnosis of celiac disease, particularly in individuals who are IgA deficient. For individuals with moderately to strongly positive results, a diagnosis of celiac disease is possible and the patient should undergo a biopsy to confirm the diagnosis.   If patients strictly adhere to a gluten-free diet, the unit value of anti-tTG antibodies should begin to decrease within 6 to 12 months of onset of dietary therapy. From: https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83671   There are no test at this time for gluten sensitivity. None. 
    • So I am trying to avoid corn. I think I react to corn badly.  I am trying to figure out if high fructose corn syrup is considered safe on a corn free diet.  High fructose corn syrup is made by separating corn starch from the corn zein. I am not sure if trace amounts still remain or there may be other ingredients is soda or candy that are made from corn.  I came across an article which I found interesting. I did realize that food that contains wheat starch can now be labeled gluten free. It still has to have wheat starch listed in the ingredients though. I am really glad it still has to be labeled in the ingredients though.  https://www.glutenfreeliving.com/gluten-free-foods/ingredients/new-word-on-wheat-starch/ "In Europe the standard for Codex wheat starch is 200 ppm gluten or less, meaning it must be further diluted during manufacturing to give a final product that tests safely below 20 ppm. According to the FDA, this will also be acceptable for products in the United States “as long as the final food product contains less than 20 parts per million (ppm) of gluten.”  
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