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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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Basically - until I was gluten free, I was in a complete fog. Spacy, detached - learning issues despite testing with high intelligence, perpetually confused, ditzy. I had trouble holding any but the simplest jobs. Couldn't think my way out of a wet paper bag, and later on, struggled with brittle Graves Disease which impacted my ability to do physical work. Had trouble learning to drive, following directions... constantly collided with things and dropped things. There was a long time that I was suspected of being on the autistic spectrum and or severe ADHD. I felt disconnected from my body to a very severe extent and like my thoughts and feelings were in pieces that I couldn't make sense of. I dropped out of high school, and struggled in college classes.

When my diet's handled, I don't have ANY of this.

Gluten issues didn't even begin to enter suspicion until 2007 when I started actually experiencing physical symptoms, though a sign could've been in 2004-2006 when I was on Atkins and mysteriously actually felt competent for the first time. Then the suspicion got shoved under the carpet again because I was found negative for celiac and my symptoms were chalked up to graves disease.

I recently went back on gluten free and find I feel a lot better.

I am a perfectly normal and functioning adult human being when my diet is under control. It doesn't change the fact that i am 38 and I've lost most of my life to being in a fog :/ I may have to repeat some of my coursework this semester because it was so bad before I went back on gluten-free.

Most recently, I lost two years on account of being sick (let go from previous job, had a flare up of my thyroid again, and couldn't go back to doing physical work) so I went back to school - but if I had to work, I have no idea what I'd do because I've been out of that field for a while now.

:/

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I lost many years due to this condition. I've got a job now, but it isn't optimal and I'm looking for a better one. It is going to be a long road. I'm so glad to have finally been diagnosed.

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Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.

Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.

Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.

However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.

I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?

Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

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Wow, guys, these posts make me choke up in tears. I too feel my last 20 years or so have been lost. I am so thankful I have finally found something that works (which is to give up gluten). I messed up royally in college, stayed at a job I hated, all because I had no energy or joy for life. I turned to alcohol for some bit of solace.

I ate my "nutritious" breakfast every morning, which consisted of a sandwich of whole-grain bread and soy burger, unintentionally poisoning myself for the first meal of the day...

I now feel so much better and rested during the day. I have only been gluten-free for three days, but I want to shout from the rooftops how much better I feel. Although I regret many, many decisions I have made while in the "fog" I am at least glad I feel better now and can have a better future.

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The first episode of (what I now know is) DH that I remember I was 15 years old .The first "problems" (as my stepmother would call them :rolleyes: ) I can remember I was age 8.

I was not "officially" diagnosed until I was 54.

That is A LOT of time between first symptoms and diagnose <_<:angry::(:angry::(:ph34r:

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Not my whole life. I lost my teen years to something else. I strongly believe I lost only my college years to celiac disease. I had a severe GI infection my first semester, during finals, and after that is when I believe I became gluten intolerant. I was not diagnosed, however, until years later and it severely affected my ability to live a functional life. Attending classes was extremely difficult. At one point I was in a wheelchair due to multiple stress fractures in my leg bones and thought I was going to be disabled for the rest of my life. I ended up only able to go to a community college taking 3-6 credits a semester for an AA degree. It's only now that I've finally gone back to University full time for my BS when my health is finally under control.

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I lost a lot of time to misdiagnosis and mistreatment, including the years most people are getting established in their careers and having children. When I first made the decision to go gluten free I was of course afraid that it would be another dead end and I wouldn't get better, but I was equally afraid that I would. I was afraid that if I had suffered for all those years when the answer was so simple I would become even angrier and more bitter.

Fortunately I was wrong. I experienced marked improvement very quickly and as the symptoms went away, so did all that anger. I can't get the lost years back. But if I would continue to lose more time to anger and resentment that would be on me. Life is too short to waste any time. All I can do is go forward from where I am and try to live each and every day to the fullest in the most positive way I know.

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Hi.I am 54. Have had alot of problems with my health, but could find no reason. I have fatigue, joint pain, leg cramps, cronic diareah, anxiety, panic attacks, brain fog, anger, depression, hyperthyoid. I suspect I have a glutten intolerence, but have never been tested. The doctors just labed me with irritable bowel, but that's not good enough for me. I really need relief. I am going to try going glutten free. I will let you all know what happens.

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These posts make me emotional too. All these symptoms are ringing so many bells. It's amazing to hear people talk about memory problems because usually people don't get it at all when I talk about memory issues. I don't remember, as another poster said, whole years, most of my childhood in fact. I've been complaining of a bad memory since I was a young teen, my dad used to say it was because I blanked out my childhood because of operations (plastic surgery and stuff) but it's continued. I started getting depressive symptoms in my teens too although it didn't explode (huge anxiety/depressive) until my 30s when I was also diagnosed with ulcerative colitis. In the past I have wondered all kinds of things about what I might have. I have never got many answers from the cognition difficulties which come with a low and yet don't really seem to come under the umbrella of depression. Three years of gluten free did make me feel a lot better but I don't think memory will come back unfortunately. I didn't have the depth of low during those three years that I had this year after a few months back on gluten (took months to put two and two together unfortunately) - now I'm convinced that for me, a major factor, even more than digestive disturbance is behaviour. It's a shame it's not easier to diagnose (without a clear diagnosis we can drift back into gluten) and that so many of us have take so long to reach the discovery but at least we have. These days I keep saying to everyone, whatever their problem, have you tried going gluten free?! :P

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PS: It can also be sad to think who we may have been without gluten and what we may have achieved/experience. I can only say now, after hanging out with some incredibly vibrant 70 year olds (I'm in my 40s) that there's still time for many of us to fulfil our potential now we are free - or at least on the road to recovery.

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I've lost quite a bit, like a lot of you. Career, Wife, child, life that I had built.

If I dwell on that, I will be lost.

I'm using this as a way of starting over.

I recall having a lot of good times when I built my first ME, building my new ME should be even better.

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Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.

Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.

Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.

However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.

I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?

Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

I am so moved by your post!! I can relate, most of my life was in a fog.

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As I read these posts I feel so thankful it's not just me.... Don't get me wrong, I would never wish this hel* on anyone. I spent so much of my life feeling like this was in my head though...... I didn't realize until I was a teen that something was wrong. Nothing made sense at school and I was hurting all the time, and so much of the time I couldn't explain what even hurt. I even resorted to self harm as a teenager and even as an adult at my lowest moments... I so badly wanted someone to make me better. After being in a fog of depression and pain, I spent 5 years REALLY sick, getting worse everyday until this last year when going gluten free and finally getting a diagnosis of celiac disease changed my life. I am thankful for my new found wellness, as I have never felt better. I grieve greatly for all the pain and missed moments and lack of memories this disease has caused. My beautiful 13 year old daughter texted me from school this morning, she needed some information for an assignment.... She needed to know how old she was when she walked and what her first word was. I am the kind of mom who would know that information off the top of my head, regardless of the fact I have 5 children. I was SO sad.... I guessed, good thing she can't remember either :) I understand now healing is a process that involves more than just my gut.

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    Jefferson Adams
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    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
    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

    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