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High Incidence of Celiac Disease in a Long-term Study of Adolescents with Susceptibility Genotypes


Photo: CC-- Gordon

Celiac.com 03/20/2017 - Researchers really do not have really good data on rates of celiac disease in the general population of children in the United States. A team of researchers recently set out to estimate the cumulative incidence of celiac disease in adolescents born in the Denver metropolitan area.

The research team included Edwin Liu, Fran Dong, MS, Anna E. Barón, PhD, Iman Taki, BS, Jill M. Norris, MPH, PhD, Brigitte I. Frohnert, MD, PhD, Edward J. Hoffenberg, MD, and Marian Rewers, MD, PhD.

Their team collected data on HLA-DR, DQ genotypes of 31,766 infants, born from 1993 through 2004 at St. Joseph’s Hospital in Denver, from the Diabetes Autoimmunity Study in the Young. For up to 20 years, the researchers followed subjects with susceptibility genotypes for celiac disease and type 1 diabetes for development of tissue transglutaminase autoantibodies (tTGA).

The team was looking for patients who developed either celiac disease autoimmunity (CDA) or celiac disease, and they defined CDA as persistence of tTGA for at least 3 months or development of celiac disease. Marsh 2 or greater lesions in biopsies or persistent high levels of tTGA, indicated celiac disease.

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For each genotype, the team assessed cumulative incidence of CDA and celiac disease. To estimate the cumulative incidence in the Denver general population, they weighted outcomes by each genotype, based on the frequency of each of these genotypes in the general population.

They found that, of 1.339 patients they studied, 66 developed CDA and met criteria for celiac disease, while 46 developed only CDA. Seropositivity for tTGA resolved spontaneously, without treatment, in 21 of the 46 patients with only CDA (46%). The team estimated the total incidence for CDA in the Denver general population at 5, 10, and 15 years of age was 2.4%, 4.3%, and 5.1% respectively; incidence values for celiac disease were 1.6%, 2.8%, and 3.1%, respectively.

This 20-year prospective study of 1.339 children with genetic risk factors for celiac disease showed the total incidence of CDA and celiac disease to be high within the first 10 years.

Although more than 5% of children may experience a period of CDA, that is, persistently high celiac autoantibodies, not all of them develop celiac disease or require gluten-free diets.

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Yes but...

I didn't read that far. Yikes... A hefty dose of perspective in that one. For anyone reading this is the post:

Hi! I'm new to the Celiac world. I have been gluten free for around seven months, but still seem to get glutened on a regular basis. I have been sick since January '16 and think that is when it triggered, but I didn't realize until October what it was. By that time I was pregnant with my little boy who is due in June. I also have an almost 4 year old daughter. I am really torn and wondering if I need to really be tested? I have very strong suspicions that I am a true celiac because my aunt has been diagnosed. Part of me says it doesn't matter, just live gluten free and assume you are, but the other part says I need to get tested so I know if my kids are at risk. So far my daughter is fine. She was grain free until after her first birthday, I plan on doing the same with my son. But I also don't want them to suffer the way I have. What would you do? The reason I don't want to get tested is I don't want to start eating it again and feel terrible while I have little kids, last year was so hard and I just want to get strong again. I also plan to bf for a few years and don't necessarily think it's a good idea to eat gluten while bf right? Thank you!

Welcome too! Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Oh I had heard his name and read some stuff about him but hadn't come across this video! Thanks!!