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The Celiac Disease Autoimmunity Research (CEDAR) Project

The following was written by one of the CEDAR staff, Stephanie Tudor - TudorS@jove.uchsc.edu. Anyone with further questions should contact her directly. If you live in Denver and are biopsy-confirmed, they would love to hear from you.

The Celiac Disease Autoimmunity Research (CEDAR) project is affiliated with the Department of Preventive Medicine and Biometrics in the School of Medicine of the University of Colorado, Health Sciences Center. It is a project supported by a grant from the National Institutes of Health (NIH), and will collect data for a total of five years. The principal investigator is Marian J. Rewers, MD, MPH, Ph.D. Other co-investigators include: Jill Norris, Ph.D.; George Eisenbarth, MD, Ph.D.; Ronald J. Sokol, MD; and Edward Hoffenberg, MD.

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The goals of this study are primarily to investigate the genetic and environmental causes of celiac disease, through the determination of the prevalence of anti-endomysial antibodies (EMA) in children considered to be at risk based on their family history (first degree relative) of either diabetes mellitus (Type I) or celiac disease or based on their HLA genotype (DR3) that is suspected to put them at an increased risk. The study is anticipating an enrollment of approximately 3,000 eligible children under the age of ten years. Most of the children reside in the Denver metro area, and a large proportion (approximately 40%) of the children involved with this research are concurrently enrolled in the Diabetes Autoimmunity Study in the Young (DAISY), which is run by the same principal investigator. The DAISY project is evaluating the presence of autoimmunity in relation to a pre-diabetic (insulin dependent diabetes mellitus) condition.

The enrolled subjects are screened initially between the ages of two and five years of age with a serum sample tested using an IgA-based anti-endomysial antibody assay. The serum samples are also screened for IgA levels in order to rule out the potential for false negative results in IgA deficient children. For the subjects who are tested at a positive titration, follow-up includes a clinic evaluation and small bowel biopsy at the Pediatric Gastroenterology Department at the Childrens Hospital of Denver, Colorado. If a diagnosis of celiac is made, the subject is referred for nutritional counseling and follow-up serum testing is done six months after the diagnosis to confirm effective treatment. Dietary factors are also collected upon enrollment of the subjects, reflecting dietary changes that are made between the ages of one and two years of age, as the introduction of gluten into the diet usually occurs in this time frame. Information on family history of other autoimmune conditions is also collected. Subjects who test negative for the presence of anti-endomysial antibodies will be re-screened two years after their initial testing, to verify their immune status with respect to the anti-endomysial antibodies.

By the end of the study period, we hope to have data that more accurately defines the prevalence of celiac disease in a United States population. The children recruited based on their HLA type are from a general population screening, and their data should be able to provide more accurate statistics on prevalence, and perhaps incidence, as some of these children have been followed since birth. We also hope to have identify associations with potential environmental exposures which may increase susceptibility to celiac disease.

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1 Response:

 
Shar
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
02 Sep 2014 11:02:52 PM PDT
I just wanted to respond anonymously to someone who posted on your website because I had and still have the same thing...(I think her name was nature girl) but I was 30 when I had a colonoscopy and they found many polyps, but I never did go back...I'm 44 now...have had intermittently blood in stool for years...




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Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!

Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks

Might want to look into a keto diet, I have UC on top of celiacs and keto is working great Yeah I have major nerve and brain issues with gluten, gluten ataxia with nerve issues and brain issues. Seems to cause my body to attack my brain and nerve system. My brain stumbles fogs, and starts looping, the confusion causes me to become really irritable, I call it going Mr Hyde. Like my mind will start looping constantly on thoughts and not move driving me literally mad, or it used to. Now days it is primary the numbness anger but the gut issues and sometimes random motor loss limit me motionless to the floor now days for the duration of the major anger effects. Used to be a lot more mental then painful gut. I did a mental trauma post on it on while back where I came out about all my mental issues with gluten.

^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.