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Is Celiac Disease Substantially Underestimated?

Celiac.com 09/18/2013 - New tests and new histological criteria for diagnosing celiac disease, along with changing perspectives on the disease's natural history are causing a number of researchers to question past prevalence estimates for celiac disease.

Photo: CC-- James CridlandA team of researchers recently set out to establish a more accurate estimate of celiac disease rates by using a new serogenetic method.

The research team included Robert P Anderson, Margaret J Henry, Roberta Taylor, Emma L Duncan, Patrick Danoy, Marylia J Costa, Kathryn Addison, Jason A Tye-Din, Mark A Kotowicz, Ross E Knight, Wendy Pollock, Geoffrey C Nicholson, Ban-Hock Toh, Matthew A Brown and Julie A Pasco.

They are variously affiliated with the Walter and Eliza Hall Institute of Medical Research, the Department of Medical Biology at the University of Melbourne, the Department of Gastroenterology at The Royal Melbourne Hospital, Melbourne Health in Parkville, Australia, ImmusanT Inc., One Kendall Square, Building 200, LL, Suite 4, Cambridge, MA, USA, the School of Medicine at Deakin University in Geelong, Australia, Healthscope Pathology in Melbourne, Australia, the Human Genetics Group at the University of Queensland Diamantina Institute, Level 5, Translational Research Institute in Woolloongabba, Australia, Endocrinology at Royal Brisbane and Women’s Hospital, Herston, Australia, the NorthWest Academic Centre of the Department of Medicine at The University of Melbourne in St Albans, Australia, Geelong Gastroenterology, Level 1, in Geelong, Australia, the Rural Clinical School at the School of Medicine of The University of Queensland in Toowoomba, Australia, and Roche Diagnostics Australia, in Castle Hill, Australia.

The researchers assessed human leukocyte antigen (HLA)-DQ genotype in 356 patients with biopsy-confirmed celiac disease.

They did the same for two age-stratified, randomly selected community groups of 1,390 women and 1,158 men, who served as controls. They tested and screened all patients for celiac-specific serology.

They found that only five patients with biopsy-confirmed celiac disease lacked the susceptibility alleles HLA-DQ2.5, DQ8, or DQ2.2, and four of these patients had been misdiagnosed. HLA-DQ2.5, DQ8, or DQ2.2 was present in 56% of all women and men in the community cohorts.

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Transglutaminase (TG)-2 IgA levels were abnormal in 4.6% of the community women, and in 6.9% of the community men. Composite TG2/deamidated gliadin peptide (DGP) IgA/IgG were abnormal in 5.6% of the community women and in 6.9% of the community men.

But in the screen-positive group, only 71% of women and of women and 65% of men possessed HLA-DQ2.5, DQ8, while 75% of women and 63% of men possessed DQ2.2.

Medical review was possible in 41% of seropositive women and 50% of seropositive men, and led to biopsy-confirmed CD in 10 women (0.7%) and 6 men (0.5%). Based on relative risk for HLA-DQ2.5, DQ8, or DQ2.2, celiac disease affected 1.3% of men and women with positive TG2 IgA screens, and 1.9% of women and 1.2% of men with positive TG2/DGP IgA/IgG screens

Serogenetic data from these community cohorts indicated that testing screen positives for HLA-DQ, or carrying out HLA-DQ and further serology, could have reduced unnecessary gastroscopies due to false-positive serology by at least 40% and by over 70%, respectively.

Requiring biopsy confirmation based on TG2 IgA serology leads to substantial underestimations of the community prevalence of celiac disease.

Testing for HLA-DQ genes and affirmative blood results could reduce the numbers of unnecessary gastroscopies.


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1 Response:

 
Irv
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
24 Sep 2013 4:37:32 PM PDT
Keep the science, it's great.




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That's what I thought! My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that. He never had the biopsy either. I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all. My doctor didn't even offer the biopsy, and said the blood work was enough. Should I seek a third opinion? I mean, I've been gluten free for 9 months...

It will prolong your life....celiac is a autoimmune disease that causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS. I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

I know this is not funny for you guys, but I had to laugh about how all of those family members simply ignored your well meant advice. That is definitely head in the sand syndrome. I have tried for a long time to find the connection between autoimmune diseases and my health. With this celiac diagnosis I have finally found it. All of the puzzle pieces are in place for sure and it is going to be my mission to do the best possible in order to get healthy again. What a sneaky disease this is and to think that none of my family members never were diagnosed, despite the fact that both have been in doctor's care all of their lives. It really goes to show that most medical doctors simply seem to completely disconnect nutrition with health. I am scared to give that advice to people when I see them suffering from specific diseases. But there are people that I would like to help if I can. Scared to make those suggestions, because so many times negative reactions follow and all I meant to do was to help that person.

There are definitely things you can do to make it easier on yourself. But all of my ideas seem to cost money and involve cooking. But I'll give it a shot anyway in case you haven't already thought of it. I would buy a small chest freezer and put gluten-free foods in it. Canyon bakehouse sells their fantastic bread and bagels right on their website. You can just buy a case of it. Then if you ever get in the mood for a sandwich or bagel the bread's right there frozen in your chest freezer. If you get invited to somebody's house for dinner find out what their cooking and make your own similar version of it. So for Easter I would make ham, potatoes and broccoli and bring that with me. So when everybody else is eating a fantastic Easter dinner I'm also eating a fantastic Easter dinner. I have other food issues and before celiac I was invited to a friend's wedding. I wasn't going to be able to eat the food they were serving so I made similar food at home. They were serving lamb, ham, vegetables, potatoes. So I brought ham, corn and potatoes with me and heated it up when everybody was going to the buffet to get their food. So when everybody else was pigging out on this great wedding dinner I was also pigging out on a great dinner. And nobody would have noticed if they didn't try. Sometimes you just get in the mood to have a frozen dinner and just don't feel like cooking something. There's two ways you can go about this. I happen to be addicted to Udi's chicken Florentine and think that their broccoli kale lasagna is very good as well. So I'd stock up on that in that chest freezer. glutenfreemall.com has tons of stuff. On Sunday you can make a weeks worth of food and freeze a lot of it in individual portions. After a few weeks you will have several different meals in the chest freezer that you made at home. You can eat those on weeknights when you're too busy to cook. In my family Friday night was always eat out fast food night. McDonald's, Burger King, pizza, fried chicken. So for pizza my plan is to purchase Etalia New York style pizza crusts. Purchase some Escalon six in one crushed tomatoes and freeze in individual portions. Buy some Grande 50/50 mozzarella cheese and freeze in individual portions as well. If on Friday night if I am in the mood for pizza I'll just grab a crust, a portion of sauce and a portion of cheese from the chest freezer and make myself pizza in under 15 minutes. When I get invited to a barbecue I bring loaded potato skins or batter fried chicken wings. Everybody loves them as do I. I by Pamela's gluten-free flour from Amazon six at a time. So I always have some available. For the record, at the moment I am an extremely strict diet and cannot do any of the above. But will go back to that method in a few months.

Yes, I remember as a child being very ill too, could never explain it. The fact that I have several autoimmune diseases speaks volumes. I sure wish I had caught this much sooner. Will have to research to increase enzyme consumption, but we can not look into our digestive system. Trying to concentrate on repairing the damage, not much else that can be done right now.