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Majority of Celiac Disease Patients are Asymptomatic and are Older when Diagnosed

Celiac.com 12/30/2004 - A new study on celiac disease was presented at the 69th Annual Scientific Meeting of the American College of Gastroenterology by S. Devi Rampertab, MD, from the North Shore Long Island Jewish Health System in New York. The study looked retroactively at 590 patients with a celiac diagnosis confirmed by biopsy from 1952 to 2004. They found that since 1980 the patient age of diagnosis has increased from 30.5 to 42, and the number of cases diagnosed after significant diarrhea decreased from 91% to 37%—and the time period from the development of the disease to its detection decreased from 11 years (before 1980) to four years now. New blood screening techniques are credited for the earlier detection of the disease, and the resulting decrease in the percentage of patients diagnosed after the development of a malignancy—which decreased from nearly 22% before 1980 to just over 5% now.

The positive trends noted in this study further support the use of widespread serum screening to detect celiac disease, as it can prevent many of the complications caused by the disease. One thing that isnt clear, however, is why the age of diagnosis is getting higher—even though Italian studies have determined through mass-screenings that celiac disease is present in at least 1% of all children. Since that number is consistent with the number of people in the USA with the disease, it stands to reason that celiac disease may in fact be a childhood disease, and if so, the 42 year-old average age of diagnosis in the USA would indicate a massive failure of our health care system to detect the disease. More studies need to be done to determine the number of children in the USA with celiac disease.

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Since most celiacs have little or no symptoms—Celiac.com believes that the only reasonable way to get them properly diagnosed and treated would be to have widespread serological screenings of the general population. The disease affects at least 1% of the population in the USA, and the benefits for such screenings would far outweigh their cost.

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It took me 20 years or more Barry so I wouldn't claim any great insight on this I had a 'eureka' moment, up until then I was walking around with multiple symptoms and not connecting any dots whatsoever. It is very, very difficult to diagnose and that's something that's reflected in so many of the experiences detailed here. A food diary may help in your case. It helped me to connect the gaps between eating and onset. It could help you to track any gluten sources should you go gluten free. It is possible for your reactions to change over time. As to whether its celiac, that's something you could explore with your doctor, stay on gluten if you choose to go that way. best of luck! Matt

I took Zoloft once. Loved it until it triggered microscopic colitis (colonoscopy diagnosed it). Lexapro did the same. However, I have a family member who is fiagnosed celiac and tolerates Celexa well.

Thanks for the update and welcome to the club you never wanted to join! ?

Jmg, I am glad you were able to come to the realisation that the culprit was in fact gluten. For me its not so simple. IBS runs in the family, as do several food intolerances. Its just in the last while that I can finally reach the conclusion that for me its gluten. The fact that it is a delayed effect-several hours after, made it harder. Friday I had some KFC, felt great. Saturday evening felt sleepy, Sunday felt awful and my belly was huge. I think I have gone from mildly sensitive to full blown celiac over the course of five years-if that possible. Thanks for all your help.

I thought I'd take a moment to provide an update, given how much lurking I've done on these forums the last year. It took a long time, but I've since had another gastroenterologist visit, many months of eating tons of bread, and an endoscopy where they took several biopsies. I have to say, the endoscopy was a super quick and efficient experience. During the procedure they let me know that it looked somewhat suspicious, causing them to take many biopsies, and then did comprehensive blood work. About a month later, I received a call telling me that the TTG came back positive a second time, and that the biopsies were a mix of negative (normal) results and some that were positive (showing blunting of the villi). As a result, I've been given a celiac diagnosis. It's been about a month now that I've been eating gluten free. Not sure if I'm really feeling all that different yet. It's a bit twisted to say, but in some way I was hoping for this diagnosis ? thinking how nice it would be to have an explanation, a plan of action, and feeling better. It's certainly no small change to be totally gluten free, but I'm hopeful.