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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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I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha

Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body. Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free