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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.

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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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20 Responses:

Barbara Poole
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said this on
01 Mar 2008 8:24:13 AM PDT
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.

Bob Morello
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said this on
01 Mar 2008 8:51:52 AM PDT
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.

Dr. Stephen Wangen
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said this on
03 Mar 2008 4:19:54 PM PDT
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.

Laura Hicken
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said this on
04 Mar 2008 6:51:18 PM PDT
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.

Sherry-Ann Herman-Kalpoo
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said this on
05 Mar 2008 6:10:26 AM PDT
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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said this on
06 Mar 2008 11:39:20 AM PDT
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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said this on
28 Sep 2009 2:28:47 PM PDT
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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said this on
04 Sep 2010 7:21:18 AM PDT
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.

kay ashburn
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said this on
08 Mar 2008 3:29:05 PM PDT
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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said this on
17 Mar 2008 12:39:22 AM PDT
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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said this on
21 Mar 2008 1:34:00 PM PDT
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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said this on
10 Apr 2008 9:00:35 AM PDT
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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said this on
29 Apr 2008 7:25:41 PM PDT
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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said this on
26 Sep 2008 4:30:11 PM PDT
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.

mom of 2 celiac boys
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said this on
30 Sep 2008 10:43:26 PM PDT
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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said this on
23 Oct 2008 7:17:31 PM PDT
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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said this on
05 Mar 2011 2:34:00 PM PDT
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.

Pamala Johnson
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said this on
22 Jul 2012 10:26:55 PM PDT
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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said this on
13 Jan 2012 4:42:49 PM PDT
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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said this on
27 Mar 2014 12:58:49 PM PDT
I diagnosed with CD 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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George, i am sorry that you are not feeling well! ?? I am not a doctor, but just trying out drugs to stop your symptoms just seems like a band aid approach. It sounds like he suspects IBS which is really, in my opinion, "I be stumped". Has inflammatory bowel disorder (IBD) (more lovely autoimmune disorders) been ruled out? This includes both Crohn's and Colitis. My niece was diagnosed with Crohn's finally with a pill camera after all other tests were given. The damage was not within reach of any scope. I am just throwing out suggestions. Hopefully, you and your doctor will figure it out soon!

Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten. Flare-ups develop (antibodies) causing damage. Not just in the small intestine, but systemically. One gluten exposure can cause antibodies to increase for days or months! Antibodies are being measured during the celiac blood tests. If there is no gluten exposure, there will be no antibodies. These antibodies can come down in some people in as little as two weeks. Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests. The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine. So, the blood test helps solidify the diagnosis. So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum. I know it is tough and you are feeling sick. Wish there was a better way to catch active celiac disease.

Hi everyone, Just an update to my situation. I had thought that I might be getting better since I started adding gluten-free grain back into my diet but I was wrong. It seems that the Methscopalamine Bromide just delayed the effects, didn't stop them. I had to stop taking it because one of the side effects is to stop sweating, which I did. There were times when I felt hot and almost couldn't catch my breath. Anyway, my doc put me on Viberzi instead. I took 3 doses, 1 Tuesday evening and then 1 Wednesday morning and then again Wednesday evening. Each time I took 1, it seemed that about half an hour later I would develop severe abdominal cramping, pain in my neck, shoulders and upper back and a feeling like my insides were on fire. My face felt like it was hot and tingling. It wasn't warm to the touch but felt like it to me. Worse of all is it didn't work anyway, I still had diarrhea. I stopped taking Viberzi after reading the precautions pamphlet which said, "stop taking Viberzi and tell your doctor if you have abdominal cramping, pain which radiates to your shoulders or upper back." Go figure. Anyway, today is 3 weeks straight of diarrhea and still no diagnosis and not sure what he's going to want to do next. George

I'm still really new to all this but is it common to have trouble with sleep? I swear since my symptoms got really bad a few months ago I can't get 1 good nights sleep, like a 5 hour stretch is doing real good. Wake up at 3am wide awake almost every night. Told my doctor and they've recommended melatonin, that doesn't work. Tried chamomile and lavender tea, no help. Tried zzquil, that will knock me out but maybe for like an extra hour then I'm really drowsy the next morning from it. I don't know what to do.

I have 2 copies of DQ9. One from each parent.