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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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Sam81

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Hi there, I am new and have been reading the forums. Here is my story/problem...

I was diagnosed at 16 with Bechets - very rare apparently for a white/british girl. I was put on Dapsone 50mg - 100mg daily + steroids if needed. I ave always suffered with what I've been told is IBS and bowel issues generally. Recently things have got worse. I am vegetarian and tried a diet (to lose weight) that was pretty much just fibre/gluten foods. in 4 months I lost 3 and a half stone, but still have a large belly. Now, most fibre/gluten foods I eat cause pain, wind, i'm always tired, I come out in a nasty rash on my buttocks that itches like nothing I have EVER felt within hours of eating certain foods and i am truly fed up with the nausea. I have recently been blood tested for Celiac and told they were normal results (whatever normal is) and have an appointment with dr tomorrow to discuss this further. Is it possible it's false result? and can anyone give me some good things to ask when I see him as I have a feeling he'll brush it off.

Im vegetarian and worried how I'll manage self diagnosis and cutting gluten out by myself! I feel I tick all the boxes for celiac. I haven't had dapsone for 18 mths due to pregnancy and breastfeeding and the dr's have suggested possible remission from bechets.

Any help/suggestions/advice is very greatly appreciated!

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Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

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Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

Thanks, the rash is definitely not bechets, i suppose its possible its the bechets but thats not normally food related - im really struggling with tolerating foods that are either high in fibre or gluten...

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I would think if you are eating a lot of high fiber/gluten items, then the test result would come back positive. I never had the blood test....they went straight to an endoscopy with me, so I am not a pro at knowing the blood test stuff. I was told I had IBS also, and to go on a high fiber diet (TONS of wheat products...>:() for 2 months...I went back 2 months later and told them it made everything worse. When they got in there for the endoscopy, there was no question I had Celiac. If you have good insurance, maybe get a colonoscopy/endoscopy? At least you would know for sure...stress from wondering what's wrong could make things worse I would think. Hope this helps?? Hope they figure it out for you!!!

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I would think if you are eating a lot of high fiber/gluten items, then the test result would come back positive. I never had the blood test....they went straight to an endoscopy with me, so I am not a pro at knowing the blood test stuff. I was told I had IBS also, and to go on a high fiber diet (TONS of wheat products...>:() for 2 months...I went back 2 months later and told them it made everything worse. When they got in there for the endoscopy, there was no question I had Celiac. If you have good insurance, maybe get a colonoscopy/endoscopy? At least you would know for sure...stress from wondering what's wrong could make things worse I would think. Hope this helps?? Hope they figure it out for you!!!

Sorry to post AGAIN, but here's something I JUST read!! How weird is that? Made me think of this post....hope it helps?

http://www.patient-experience.com/index.php/overcoming-celiac-disease/

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There is a rash called dermatitis herpetiformis that is closely associated with celiac diseease. That rash (DH) causes blisters and the doctor can biopsy the skin near the blister to check for antibodies to gluten.

People with celiac disease have a higher than usual chance of getting other auto-immune diseases also.

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Sorry to post AGAIN, but here's something I JUST read!! How weird is that? Made me think of this post....hope it helps?

http://www.patient-experience.com/index.php/overcoming-celiac-disease/

Thanks for this link, I get the feeling this is how it'll be for me as that was similar to how it was for the bechets diagnosis, lots of negative results and in the end almost a process of elimination... It's a long tiring road... If I get no joy I will just have to try different things. Dairy/gluten/fibre see if anything works. Colonoscopy is scheduled for end of year...

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Apparently the celiac test results are not in and take 2-3 weeks. Regular bloods are all normal - no signs of anaemia, inflammation (chrones) etc. Colonoscopy brought forward to end of August. Can a colonoscopy confirm Celiac??

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Apparently the celiac test results are not in and take 2-3 weeks. Regular bloods are all normal - no signs of anaemia, inflammation (chrones) etc. Colonoscopy brought forward to end of August. Can a colonoscopy confirm Celiac??

Colonoscopy looks at the wrong end. You need an endoscopy with small bowel biopsies to diagnose Celiac

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Colonoscopy looks at the wrong end. You need an endoscopy with small bowel biopsies to diagnose Celiac

Yes, exactly. When I went in for my colonoscopy (which found nothing but my healthy colon ;)), they asked if I wanted an endoscopy also while they were at it, I said SURE! Why not? So glad I did or they wouldn't have found it.

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Yes, exactly. When I went in for my colonoscopy (which found nothing but my healthy colon ;)), they asked if I wanted an endoscopy also while they were at it, I said SURE! Why not? So glad I did or they wouldn't have found it.

Yes - I'll be asking for an endoscopy when I go in...

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Yes - I'll be asking for an endoscopy when I go in...

You'll want to ask for an upper GI endoscopy, or EGD (Esophagogastroduodenoscopy)

Endoscopy refers to all techniques using an endoscopy, including both upper GI tract and the colon/large intestine.

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...similar to how it was for the bechets diagnosis, lots of negative results and in the end almost a process of elimination...

Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be?

I only ask because a lot of the symptoms I'm reading about (I, too, didn't know much about this) can also be symptoms of celiac disease. So was wondering what exactly led them to suspect Bechets in your case, on the off chance it might be something else.

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Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be?

I only ask because a lot of the symptoms I'm reading about (I, too, didn't know much about this) can also be symptoms of celiac disease. So was wondering what exactly led them to suspect Bechets in your case, on the off chance it might be something else.

It was process of elimination. I had one episode of genital ulcerations. Lot's of mouth ulcers, tired/fatigue, my white blood cell count was low. I did have a rash that kept appearing on my legs but I have always been told it is NOT bechets related (never found what it is). I was put straight on Dapsone, and diagnosed with Bechets and IBS for the abdominal pain and bowel issues. I have just been to the Dr's who says my blood test for celiac is negative but won't give me the results. Last night I tried a new vege product and within hours had a rash on my elbows and knees (usually only get it on my buttocks). Dr is saying it is an allergy rash, not celiac - refusing to give me endoscopy as it costs extra. My concern is simple - is it possible that I have celiac and not Bechets and the dapsone has masked the symptoms of the celiac until now when I've come off it (2years) due to pregnancy and breastfeeding? Really fed up of no-one (Dr)listening.

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As a further point i wanted to add, in the last 4 days my stomach pain and nausea as reached new heights and the muscles in my back and legs have become sooooo sore they are untouchable. Dr doesn't think it's related - could it be?? I've managed to get a Colonoscopy at then end of August and a referral to a Dermatologist but that I think - is my lot.

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If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately as doctors can be clueless. Also if you are in the US you have a legal right to copies of any tests that are done. Don't ask for them TELL them you want copies of the results.

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If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately as doctors can be clueless. Also if you are in the US you have a legal right to copies of any tests that are done. Don't ask for them TELL them you want copies of the results.

They prescribed Dapsone for the Bechets - apparently it is also treatment for that. I've been on it for 12 years. I'm in the UK and apparently the Dr has to OK my request for my results and as he's being really annoying I doubt I'll get them. I think I've been mis diagnosed... But blood results are negative! Also bread doesn't set me off very much other than tummy pain - which is what he keeps telling me - if you can tolerate bread - you don't have celiac...

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Are there "types" of gluten? Wheat gluten? barley gluten? Is it possible barley gluten makes me re-act stronger than wheat gluten?

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My concern is simple - is it possible that I have celiac and not Bechets and the dapsone has masked the symptoms of the celiac until now when I've come off it (2years) due to pregnancy and breastfeeding?

Honestly, and this is only a guess by a complete layman, here: I'd say yeah. It's possible.

Do you NEED a diagnosis? Whether you are diagnosed or not, the treatment would be the same: stop eating gluten. Stop eating foods contaminated by gluten (cross-contamination). No diagnosis needed.

The reason I ask is that if they don't think it's celiac disease...you could just go on the diet yourself and see how it does for you. Although getting the drugs gluten free might be tricky. But many here on the board ended up doing that because they're in the same boat as you: no doctors will help, or test, or even LISTEN.

Lucky for celiacs that we don't NEED the doctors for any medication for our treatment. We can tell them to kiss our petutie and go check it out for ourselves. Some prefer a diagnosis, but we don't need it. And if everything improves on the diet, then you've got a good case. If nothing improves, you'll know that the diet likely isn't the issue.

And if you improve and they want you to make yourself sick all over again so they CAN test now? Well...they should have listened to you in the first place, right? They can go suck eggs.

Uh, yeah...bad doctor moment today. :rolleyes:

And as an aside: a colonoscopy won't diagnose celiac disease. They have to test the other end, in the upper intestines below the stomach. So IF they told you that the colonoscopy would help diagnose this, they're either trying to pass you off, or are showing their ignorance.

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I totally agree. I diagnosis would get me food on prescription which would help us financially and also help my family to accept I have it (this is the main reason) although I've gone down hill so quickly I tthink it may be sinking in. The rash I came out in yesterday has gotten worse since - covered in it now. My fault for eating shreddies!

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Ok so I have my test results in front of me, finally after much fighting - with the celiac result missing! In it's place he has put the word negative - his reading. He has tested me for Anti-tissue transglutnase - is this right or should there be more?? He has listed my full blood count but removed the celiac one. I am in the UK - if there are any UK sufferers/doctors that can help please do. It really feels like he's trying to keep info from me!

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There should have been more test results, yeah, if he did it right. The term 'anti-tissue transglutaminase' is actually not completely specific. There are two kinds that are usually tested in celiac blood panels: IgA and IgG. There's also the IgA Antiendomysial Antibodies test, AND you should have been given the Total Serum IgA test to make sure you are not deficient in IgA, because a certain percentage of Celiacs have this deficiency, and if they do, their tests come back falsely negative for celiac disease.

Re: the 'reacting to bread' comment. I DO react to bread (diagnosed with blood and biopsy). But I don't have any gut symptoms to it at all. No big D, no tummy pain even. Many doctors would tell me I don't react to it, as a result.

And jeesh, it very much does sound like he's trying to keep information from you. :blink: Is there any legal recourse to getting your results?

If he had to give the okay for you to get your test results...can you call the office, by chance, and mention that you need all the results that he gave the 'ok' for, but you'd like to drop by and get them because your copy is missing some parts and you can't read the complete results anymore (which is technically true, even if the problem with reading the results is because the doctor obscured them on purpose).

With so much obfuscation by the doctor re: the tests, personally I would be very concerned right now that you don't have a correct diagnosis. If he can't be open with you about your testing and trust YOU, how can you trust HIM?

Argh - Man, I think I would be going gluten free ASAP...or planning to let my dog poo on the doctor's front door step, LOL. At least it would make me feel better, eh? ;)

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That's awful that the doc would do that to you. I'd not even be returning to that doc after a stunt like that. (Although it's illegal here, as someone else noted. But still!).

I'm personally not diagnosed, but my recent issues with milk brought the issue up again. CAN you go to a different doctor? If so, you might want to. Sounds like this doc has other interests than your health.

The fact that he's *hiding* the levels suggests, to me, that it was actually positive and he's a jerk. He must just enjoy seeing you in pain or something. Go Gluten Free. It's hard at first, but it gets easier. And you'll enjoy the new foods. Mom got English Muffins the other day when we went shopping, and I like them! (I never really liked English Muffins before though). New foods that taste better and most (I've seen) are made with better ingredients, too!

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So you can have mouth sores from eating the gluten? I continually test neg but find that eliminating the gluten helps. I however have constipation worse since going gluten free. Ate some gluten yesterday and had mouth sores by bedtime. I have had them many times before but never put the two together until now. Very frustrated and tired. Lost a lot o weight and not sure how to put it back on.

Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

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Yes, mouth sores are one of the symptoms that can come up. There also seems to be an adjustment period bowel-wise in the months after, but that should even out. Maybe try some higher-fiber veggies?

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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.  
    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

    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