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  • Jefferson Adams
    Jefferson Adams

    Most People Diagnosed With Celiac Disease Show No Symptoms


    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.

    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 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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    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 earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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