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    Most People Diagnosed With Celiac Disease Show No Symptoms


    Jefferson Adams

    Celiac.com 02/18/2008 - A greater awareness of celiac disease, coupled with better and more accurate tests for celiac disease have helped to bring about a situation where most people currently diagnosed with celiac disease show no symptoms at the time of their diagnosis. Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. This finding has caused doctors to call for an adjustment to screening procedures for high-risk populations.


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    A team of researchers led by Dr. Grzegorz Telega recently surveyed medical records of people diagnosed with celiac disease at Children's Hospital of Wisconsin from 1986 to 2003. The statistics showed that the number of celiac disease diagnosis rose from a single case in 1986 to 93 cases in 2003. The total number of cases during that period was 143.

    Before the mid-1990’s, more than 85% of children diagnosed with celiac disease were under 10 years old, with the average age being just over 5 years old. After 1995, less than 50% of children diagnosed with celiac disease were under 10 years old, and the average age at diagnosis had risen to about 8.5 years of age. Children diagnosed before the age of 3 years old usually complained of classic celiac-associated gastrointestinal symptoms, such as malnutrition, diarrhea, abdominal pain, and bloating, while children diagnosed at older ages had less pronounced symptoms.

    One of the important conclusions made by the research group is that the possibility of celiac disease should be strongly considered in people with other autoimmune disorders, even if those people do not show gastrointestinal symptoms traditionally associated with celiac disease.

    The research team called upon primary care doctors to adopt a practice of celiac screening for all people with elevated risk factors, including people with a family history of celiac disease, people with Addison’s disease Down Syndrome type 1 diabetes, thyroiditis, Turner syndrome, and type 1 diabetes. The team also called for screening of patients with short stature, iron deficiency anemia, and high transaminase levels.

    Arch Pediatr Adolesc Med 2008;162:164-168.


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    Guest Barbara Poole

    Posted

    I think Doctors need to be educated on the fact that not all celiacs show symptoms. My Son recently asked his Dr. for the blood test but the Dr. refused as he didn't show any symptoms. However as his Mother (with Celiac) I strongly suspect he may have it.

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    Guest Bob Morello

    Posted

    Found the article very informative, since I was diagnosed with Celiac just over 16 months ago. Although, I've probably had the problem for at least four-and-a-half years. That is when I developed a rash that included bubbles filled with what appeared to be water. These appeared mostly on my elbows, knees, and other parts of my body. For 3 solid years, I went to a local well-known Dermatologists office. My problem was never diagnosed, I was told it could be exzema, or some other such rash. A biopsy was done which I was told was 'inconclusive'. At time my doctor moved out of state and was replaced by another female doctor. I opted to see this new doctor. On my first visit with her she looked at the rash which at this time now appeared on my elbows. She asked if I would mind if she did a biopsy. I reminded her that I had just a biopsy, and she said that she was aware of that, but wished to do a second biopsy. She called me with the results and said that I had a case of Dermatitis Herpetaformis. I immediately research DH and read about its association with Celiac. She suggested that I go for a blood test to see if Celiac was detected. I then was told that the results pointed strongly to Celiac, and that the Gold Standard was the Endoscopy. After the Endoscopy, the doctor told me that I indeed had Celiac. I don't ever remember having any Celiac-related symptoms, and was totally shocked. I have since gone on a zero-tolerance Gluten-Free diet, and immediately dropped 24 pounds, not a good way to lose weight. I have since put back on about six pounds, and feel good, but still have problems finding stuff to eat that will make me happy. I hated giving up pizza, and I was a big fan of Italian pastry, and while it has eased the pain a bit, I'd really like to know if I will ever be able to eat pizza or pastry again, even if not reverting to a 'normal' diet again. I'd like to hear some input from other readers. Is there a time that I can get tested to find out if I am healing (or will ever heal). Thanks.

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    Guest Dr. Stephen Wangen

    Posted

    There really is no good medical reason not to do a blood test for celiac disease, especially with a family history of celiac disease or gluten intolerance. If doctors really wanted to do true preventive medicine, then we would be screening people for this condition long before they ever developed obvious symptoms. And of course, the list of potential signs and symptoms is very long. If your doctor won't run the test, then you should find someone who will.

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    Guest Laura Hicken

    Posted

    I had Celiac disease for over a year and a half before it was diagnosed even though I had very classic symptoms. I was placed on a whole wheat diet and went through a litany of tests before I was finally diagnosed. My doctors claimed they didn't test for it because such a small percentage of the population has it that they thought it was unlikely. It was only after my diagnosis that I started to realize that other problems I had when I was younger (joint pain, poor circulation, gastrointestinal discomfort and cramping and low iron levels) were probably early indicators. The symptoms can be so broad and subtle that I think it's unfortunate that doctors don't test for it more readily and more often. I feel lucky that I was diagnosed as early as I was.

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    Guest Sherry-Ann Herman-Kalpoo

    Posted

    I think that the blood test should be done at some point in your life even though you do not have any symptoms. I do not think that I have celiac disease but would like to get tested, because my baby was just six months old when she started having severe diarrhea. For three months I visited doctors in my country Trinidad and they could not find anything wrong with her. She started loosing weight rapidly from 12 lbs. she went to 9 lbs. in just a matter of a week , she started getting life less. Finally I asked my doctor to get me a recommendation to visit Miami Children's Hospital where we visited DR. Jesse Revees Garcia a gastroenterologist and he did a biopsy and a endoscopy and my baby was diagnosed with celiac disease even though neither my husband or my self does not have any symptoms associated with celiac disease.

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    Guest Lynch

    Posted

    I was just wondering it anyone knew the consequences of not following a gluten free diet if you've been positively diagnosed, but show no symptoms.

     

    Please consider the people who show no difference in attitude or fecal excretion on or off the diet, but have been given the 100% positive diagnosis more than once.

     

    If you show no visible difference on or off the diet, then is it necessary to go on a gluten free diet?

     

    If so many people show no symptoms and are never diagnosed, then it is possible you could've potentially gone your whole life without knowing, and remained happy eating chewy 2$ loaves of bread and takeout pizza.

     

    Sure by not going on a gluten free diet, you've increased your risk of some diseases, but by how much? And don't a lot of things increase our risk of dying? What happens if you go on a gluten free diet and get osteoporosis anyways? I'd be pretty bitter that I said no to my grandmother's homemade birthday cake just because I was on a diet that turned out to make little difference in my health except make my life a whole lot more miserable.

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    Guest kay ashburn

    Posted

    I found this to be very informative and it also helped me to feel a little more connected. I sometimes feel so alone with this disease. Thank you again.

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    Guest Tichy

    Posted

    Five stars. Lynch's comment gets the boot; that denial stage is a bugger! For all in denial: You are in control of your health. Are you as healthy and happy as you can be? It seems that some people need the threat of cancer looming over them in order to comply with a gluten-free diet. Well - you have it - intestinal lymphoma is a real possibility in untreated sprue. REFERENCE: Intestinal lymphoma and sprue: A systematic approach

    Dutz et al. Gut.1971; 12: 804-810.

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    I'm in denial..I've been watching seriously now for 9 months and today I ate a chocolate chip cookie...it was just looking at me and now I'm suffering...my stomach is talking, my back is killing me, I have to go lay down, my head hurts, I'm just a mess... so this last fling...is over...why do I do this?

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    Guest vicky

    Posted

    I think this is a good article but I wish someone would talk more about those without NO symptoms. it is so hard for us. yes, I'm glad I don't get sick, but I never know if I am accidentally taking in gluten (I have been gluten-free for almost a year) and it makes me doubt my positive celiac disease diagnosis. I am strongly considering doing the gluten challenge for this reason. I never had a biopsy and think maybe I should do it just in case. But I know all about the complications with the gluten challenge, and I'd hate to have done that to myself (getting back on gluten ... yuck!) and then not get an accurate result. so stressed!

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    Guest charlotte

    Posted

    I have been on the gluten free diet for 5 1/2 weeks now and been told I have celiac disease. I have never been tested to find out for sure if I have it. I was in the hospital and my medical Doctor just assumes I have it.

    I did the gluten challenge and I know I am gluten free.

    Also another one of my doctors wants me to have a test to find out if I am indeed celiac, so I agreed to be tested. That should be soon. I'm sure I am though...

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    I was diagnosed with Celiac Disease 5 years ago. During those five years I followed the gluten free diet, but I did cheat regularly because I never had symptoms. Recently a new form of blood testing was discovered, so my doctor had me re-tested. I just found out 2 days ago that I do not have Celiac Disease. So I wouldn't trust a doctor's speculation, get the test done to be sure.

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    Guest mom of 2 celiac boys

    Posted

    I have two boys with celiac disease. One diagnosed at 19 months and the other at 10 with Dermatitis Herpetiformis as well. The 10 year old should have been diagnosed way earlier as he had many symptoms and I was told he had chronic eczema and he was going to be seen for depression. My boys are now 10 & 17. They have been on a Gluten-Free diet for a long time. Both my boys will throw up with any ingestion of gluten. My younger son knows no difference and likes all his gluten-free foods. My older son has learned to like the gluten-free foods he must eat. I live in Burlington, ON and we can order Gluten-free pizza at Pizza Pizza as of this year. The only thing he really misses is sub sandwiches. My older son will still throw up on occasion and we don't know why. It has taken a long time for his Dermatitis Herpetiformis to clear up. His legs still look a mess and good thing they're hairy now. My whole family got tested for Celiac Disease. My oldest son is negative. My husband's blood work was positive, but biopsy was negative. I am going to get him re-tested soon as over the past year he has had lots of stomach aches, nausea, back aches, and is miserable mentally. I've suggested that he go on the Gluten-Free diet as I now believe a biopsy will tell him he is officially celiac......but he won't listen. I know several people who experienced no symptoms are wondering why go on the Gluten-Free diet. After surviving on the Hamilton Celiac Association's board for 8 years I have talked to many people. A lot expressed the same concerns....but after being on a Gluten-Free diet for several years they all said that if they had the slightest amount of gluten they began to experience systems. Also, after attending several conferences and being a non-celiac person...I can spot a celiac 'old' person a mile away. As we age I believe later diagnosed celiacs have a rougher time going through the aging process....this is my personal opinion.

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    I was just told I have Celiac after the blood test today. I am happy to finally know what I have been suffering from for almost my whole life. Thanks to reading what many have wrote I look forward to living life without pain even if that means no pizza!

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    I was just wondering it anyone knew the consequences of not following a gluten free diet if you've been positively diagnosed, but show no symptoms.

     

    Please consider the people who show no difference in attitude or fecal excretion on or off the diet, but have been given the 100% positive diagnosis more than once.

     

    If you show no visible difference on or off the diet, then is it necessary to go on a gluten free diet?

     

    If so many people show no symptoms and are never diagnosed, then it is possible you could've potentially gone your whole life without knowing, and remained happy eating chewy 2$ loaves of bread and takeout pizza.

     

    Sure by not going on a gluten free diet, you've increased your risk of some diseases, but by how much? And don't a lot of things increase our risk of dying? What happens if you go on a gluten free diet and get osteoporosis anyways? I'd be pretty bitter that I said no to my grandmother's homemade birthday cake just because I was on a diet that turned out to make little difference in my health except make my life a whole lot more miserable.

    I just read your comment and I agree with you. I was having panic attacks and the doctors did an endoscopy test to find out I have celiac. I've never had any problems. He puts me on the gluten-free diet and I was sick to death and almost ended up in the ER.. My doctors told me to go back to my normal diet and maybe cut back a bit..

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    I was just wondering it anyone knew the consequences of not following a gluten free diet if you've been positively diagnosed, but show no symptoms.

     

    Please consider the people who show no difference in attitude or fecal excretion on or off the diet, but have been given the 100% positive diagnosis more than once.

     

    If you show no visible difference on or off the diet, then is it necessary to go on a gluten free diet?

     

    If so many people show no symptoms and are never diagnosed, then it is possible you could've potentially gone your whole life without knowing, and remained happy eating chewy 2$ loaves of bread and takeout pizza.

     

    Sure by not going on a gluten free diet, you've increased your risk of some diseases, but by how much? And don't a lot of things increase our risk of dying? What happens if you go on a gluten free diet and get osteoporosis anyways? I'd be pretty bitter that I said no to my grandmother's homemade birthday cake just because I was on a diet that turned out to make little difference in my health except make my life a whole lot more miserable.

    I agree, with you. I was recently diagnosed and was very surprised at the results. I do not eat meat so that limits one part that is mostly approved for me to eat. I have now discovered my diet was for the most part a diet full of foods containing gluten. I lived on bread products. I have been on the diet a week and have been miserable. I live on a coffee, baked potato and salad, fried potatoes and canned vegetable diet. One of our favorite things to do as a family was travel and try new foods around different areas. The doctor was explaining to me that you have these finger shaped things in your intestines and those are usually flat in people with celiac disease. She said mine was perfectly fine and healthy and they believe they caught it early. So I have those wonders...how long could I continue my regular diet until there are signs or a visible problem. At that point would I be able to go on the gluten free diet and reverse the effects. Believe I read it can take from 2 weeks to a few months to health your intestines. I don't like to gamble with my health and life. I just fear this diet will be the death of me itself. When you don't eat meat and don't adjust well to the gluten free products, you do not consume a lot of well anything.

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    Guest Megan

    Posted

    I have had celiac for 21 years. I was diagnosed at the age of 2 so that was in 1989. My mom was told she was crazy and that were was nothing wrong with me, and finally she was able to get an answer and testing done. Now I have a 10 month old son who is very sick. Throwing up, won't eat, diarrhea etc. I had told my family doctor and all the ped's doctors he has seen in his short life time that I have celiac. They tell me, oh he can't have it, its soo uncommon, he is soo happy and is gaining weight. Well for the past few days he has been puking and wont stop, so my husband and I took him in to the hospital (we live in a town that has roughly 6,000 people) and finally after 10months they are giving him a blood test to see if he has celiac. Now that I have ranted, my question is why does it take so long? why has he been suffering all this time? only other problem is he has been on a wheat-free diet his whole time. Any one else have any similar problems? The doctors don't seem to do much, so we are left on our own to battle this out.

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    I think I may have a sensitivity to gluten. I get stomach upset, diarrhea, bloating and headaches. These symptoms do not happen every time I eat gluten though so I am not sure. I have eliminated it for one month and when I reintroduce it I get the symptoms but then the more I eat it is as I my body adjusts to it and I only then will have the symptoms about three times a week. Does this sound like a sensitivity? I am confused because the symptoms do not occur each time I eat gluten.

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    Guest Pamala Johnson

    Posted

    I have had celiac for 21 years. I was diagnosed at the age of 2 so that was in 1989. My mom was told she was crazy and that were was nothing wrong with me, and finally she was able to get an answer and testing done. Now I have a 10 month old son who is very sick. Throwing up, won't eat, diarrhea etc. I had told my family doctor and all the ped's doctors he has seen in his short life time that I have celiac. They tell me, oh he can't have it, its soo uncommon, he is soo happy and is gaining weight. Well for the past few days he has been puking and wont stop, so my husband and I took him in to the hospital (we live in a town that has roughly 6,000 people) and finally after 10months they are giving him a blood test to see if he has celiac. Now that I have ranted, my question is why does it take so long? why has he been suffering all this time? only other problem is he has been on a wheat-free diet his whole time. Any one else have any similar problems? The doctors don't seem to do much, so we are left on our own to battle this out.

    You child may be on a wheat-free diet, but what about the other sources of gluten, barley, malt, rye, oats? Or what about cross contamination of foods? I just recently learned that powdered sugar and cornstarch are not necessarily gluten-free even though I have been trying for 3 years to eat strictly gluten-free due to my out of control celiac disease. I would bet my bottom dollar your child is getting exposed somehow either through food, drink or skin/bath products.

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    I diagnosed with celiac disease 5 years ago, after having a endoscopy (biopsy). I had diarrhea for many months before I get diagnosed. Then I stick to gluten free diet for around 3 years, but again I have started taking gluten as I don't have any symptoms at all.

    its been long time now I am taking gluten regularly and there is no reaction or weight loose. But doctors still saying that I should not have gluten as i Diagnosed with this disease even though I don't have any symptoms. Is anybody out there have similar story?

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  • About Me

    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

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    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.