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    Jefferson Adams

    High Rates of Celiac Disease Among First-Degree Relatives

    Reviewed and edited by a celiac disease expert.

      A new study of diagnosed celiac patients shows high rates of celiac disease among screened first-degree relatives.


    Caption: Image: CC BY 2.0--BFS Man

    Celiac.com 09/02/2019 - A team of researchers recently set out to investigate rates of first-degree relatives (FDRs) with celiac disease detected at screening, and the diagnostic significance of anti-tissue transglutaminase (anti-TTG).

    The research team included Shilpa S. Nellikkal, MBBS, Yamen Hafed, MD, Joseph J. Larson, BS, Joseph A. Murray, MD, and Imad Absah, MD. They are variously affiliated with the the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota; the Division of Pediatric Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota; and the Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota.

    Using data from the Mayo Clinic going back to 1983, the team conducted a retrospective study on a group of 104 patients diagnosed with celiac disease and their first-degree relatives.

    The data included demographics, original symptoms, reasons for testing, family history, number of other family members screened, biopsy reports, and results of serologic tests.

    The team screened 360 out of a total of 477 first-degree relatives, finding a total of 160 first-degree relatives who were diagnosed with celiac disease, 62% of whom were female. All diagnosed first-degree relatives had positive anti-TTG titers. 

    They found clinical features in 148 diagnosed first-degree relatives. Just nine of those diagnosed first-degree relatives had classic symptoms, 97 showed non-classic symptoms, and 42 showed no symptoms. Histology reports from 155 first-degree relatives showed 12 with Marsh 1, 77 with Marsh 3a, and 66 with Marsh 3b. 

    The team used levels of anti-TTG greater than or equal to 2.75 of the upper limit of normal to spot first-degree relatives with villous atrophy with 87% sensitivity, 82% specificity, and a positive predictive value of 95%.

    This study of diagnosed celiac patients showed high rates of celiac disease among screened first-degree relatives. Small bowel biopsies revealed that high anti-TTG titers were associated with villous atrophy, irrespective of symptoms.

    Read more at Mayoclinicproceedings.org.


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    That is an interesting study.  What may also be interesting is my family history.

    My Father's siblings were never tested for Celiac.  However so far at least 1 of each of  his siblings children have been diagnosed with Celiac disease so far.  My father has some of the symptoms however his blood work did not test positive and we are not going to subject him at 91 to a full GI work up to satisfy our curiosity.  I have urged my siblings to tested.  At this point we know of at least 1-2 of the youngest generation has Celiac and several of the other general family members have some degree of gluten intolerance as well as lactose intolerance.  It will be interesting to follow the younger generations to see what happens.

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    I am the only one in my family on both mother and fathers side that has Celiac Disease, and also a diagnosed High Sensitive Celiac.  I am only one with stomach problems, I checked with aunts, uncles, grandparents etc etc etc but I am the only one.  I have had this disease for over 39 years and during that time no one else, be it nephews, nieces,  cousins 1st  and second cousins their children my grandchildren and NO ONE has contracted the disease????  This does not work (in my case) with your theory of First Degree Relatives.  I was always told it is hereditary so that theory doesn't work either because I'm the only one????  

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    6 hours ago, Guest jasmith said:

    What the heck is "first degree relatives" ?????????????

     

     

    5 hours ago, cyclinglady said:

    It includes your parents, brother and sisters, and your kids.  

    In my family my grandmother had Celiac. She was born in 1908 and interestingly enough even as a child she could not drink milk from their cows during the winter when the cows were on feed, but once they were let loose to forage on their own during the spring and summer months my grandmother had no problem with drinking their milk. So, obviously she had an allergy to grasses. I was diagnosed with Celiac in 2011, but I can look back and realize that I probably had a problem in the early 70's. I have also suffered Celiac skin disorder called Dermatitis Herpetiformis for at least 20 years. I have one grandchild who was been diagnosed for Celiac at age 7. She is 11 now and has to have a special meal prepared at school because of this. There are other grandchildren in the family that I would also include as Celiac, but they have not been tested. Because of my mother's disorders, I would safely assume that she too, was Celiac. It's a mess, for sure!

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    I am 63 years old and I was diagnosed  around age 2 or 3. I was put on a gluten-free diet and improved.  After about five years they thought I grew out of it and so they put me back on wheat   I tolerated it all right not great and was I was small and thin.   After I had my babies in my 30s I became very ill again and was read diagnosed with celiac disease. I have two children both who cannot tolerate gluten. They never tested positive for celiac but apparently have it.I come from a family of 11 and I have one sister that was diagnosed young although she does continue to eat gluten. I have a handful of nieces and nephews who have also been diagnosed with celiac.

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    11 minutes ago, Guest Betsy Appel said:

    I am 63 years old and I was diagnosed  around age 2 or 3. I was put on a gluten-free diet and improved.  After about five years they thought I grew out of it and so they put me back on wheat   I tolerated it all right not great and was I was small and thin.   After I had my babies in my 30s I became very ill again and was read diagnosed with celiac disease. I have two children both who cannot tolerate gluten. They never tested positive for celiac but apparently have it.I come from a family of 11 and I have one sister that was diagnosed young although she does continue to eat gluten. I have a handful of nieces and nephews who have also been diagnosed with celiac.

    Maybe your children are like me, and only test positive to the DGP IgA. Unfortunately, most doctors just order the common TTG test because it catches most celiacs but not all.  A full screen containing all the celiac tests that measure antibodies is best.  Then there about 10% of celiacs who are seronegative, meaning their blood tests are negative, yet intestinal  biopsies reveal damaged villi.  

    I have a friend who’s sister was diagnosed as a child.  She was told too that she out grew it.  Instead she just became asymptomatic.  Thirty years later she was diagnosed again with celiac disease and so was my friend who got tested even though she felt pretty good.  

    I hope you continue to improve on a strict gluten free diet. I can not imagine making myself sick on purpose when there are plenty of yummy gluten-free substitutes.  

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    2 hours ago, Guest Joan said:

    I am the only one in my family on both mother and fathers side that has Celiac Disease, and also a diagnosed High Sensitive Celiac.  I am only one with stomach problems, I checked with aunts, uncles, grandparents etc etc etc but I am the only one.  I have had this disease for over 39 years and during that time no one else, be it nephews, nieces,  cousins 1st  and second cousins their children my grandchildren and NO ONE has contracted the disease????  This does not work (in my case) with your theory of First Degree Relatives.  I was always told it is hereditary so that theory doesn't work either because I'm the only one????  

    It is not a theory.  The Mayo Clinic’s recent celiac disease study revealed that 44% of first degree relatives had celiac disease and most did not have any symptoms.  That is way up from the old 1 in 10 statistic.  

    https://www.news-medical.net/news/20190822/Mayo-Clinic-Study-Calls-For-Screening-Of-Family-Members-Of-Celiac-Disease-Patients.aspx

    I am the only one formally diagnosed in my family.  An aunt and some cousins went gluten free, but failed to get tested.  My own first degree family refuses.  They say they do not have symptoms but they have many illnesses.  I guess the thought  of giving up bread or beer is too much for them.  They would rather suffer.   My own child was tested twice (full celiac panel) and she is negative for now..... Plus, some doctors still think you need to look malnourished and that is false, but they refuse to order the test.   (There of plenty of overweight celiacs.). Finally, the most common symptom in adults is anemia and NOT gut issues.  

    Good luck with your family.  Someday, they will come around, I hope!  

     

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    I was diagnosed with Celiac disease in 1998 and am 82 years of age.  My oldest brother was diagnosed in 2004 with Dermatitis Herpetiformis.  My brother younger than I was diagnosed in 2005 with Celiac disease.  Neither of them stay clear of gluten.  The brother with Dermatitis Herpetiformis gets some kind of medicine which stops the breakouts.  The other brother stopped a gluten-free diet probably five years ago and says that he has no problems with his gut.  I stay on a strict diet and if exposed to gluten unknowingly I have stomach aches, joint aches and cough during the night when I sleep.  My father was diagnosed with gluten intolerance when he was in his 70's but refused to change his diet. He died from a massive heart attack when he was 86.  Did gluten contribute to his death - who knows!!!  My great nephew was diagnosed with celiac under the age on one but his parents have not continued restricting his diet and say that he just had a dairy allergy.

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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