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  • Jefferson Adams
    Jefferson Adams

    Close Relatives of Celiac Patients More Likely to Have "Silent" Celiac Disease

    Reviewed and edited by a celiac disease expert.

      'Silent' celiac disease common in parents, siblings, and children of celiac patients.

    Caption: Image: CC BY 2.0--Dizzy-one

    Celiac.com 10/21/2019 - Parents, siblings and children of people with celiac disease are not only more likely to develop the autoimmune disease, they are more likely to develop a "silent" version, which presents few or no obvious symptoms, according to the results of a recent study.

    Because of this, Mayo Clinic researchers are now recommending that these first-degree relatives of celiac patients undergo celiac screening.

    Celiac disease is an autoimmune condition that causes gut damage when those affected consume gluten, a protein in wheat, barley and rye. A strict gluten-free diet is currently the only treatment for celiac disease.

    The study of celiac patients and their families showed that nearly half of close relatives who received celiac blood tests were later diagnosed with the condition. Nearly all of them had atypical symptoms or no symptoms at all. These results are startling, as are the recommendations to test people who show no symptoms, just based on their close relation to known celiac patients. That's unusual, because researchers usually keep their screening efforts restricted to those who show symptoms. 

    Current guidelines call for testing family members when children are diagnosed with celiac disease, but, until now, when adults are diagnosed, called for testing only those close relatives who show symptoms. However, the study shows a clear likelihood of celiac risk in close relatives, which led to the Mayo Clinic's recommendation to extend testing to all close family members of known celiac patients. 

    It's important to diagnosed celiac disease as quickly as possible. Untreated celiac disease patients face an elevated risk of developing other conditions like nutritional deficiencies, anemia, osteoporosis and even lymphoma.

    This is really huge news, as it means that large numbers of people likely have celiac disease without even knowing it. So, if you or your loved ones know anyone with celiac disease, pass along this information. Their immediate family members should probably get screened for celiac disease.

    Hopefully, this study and will trigger more like it, and increase testing of asymptomatic people who are at high risk for undiagnosed celiac disease.

    Read more in the Mayo Clinic Proceedings, online August 22, 2019, and at Reuters.com

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    I find it astounding that this is a new approach.  I was a "silent" celiac sufferer for 50 years, with no symptoms.  At age 50, I became addicted to ice, (the hard form of water type).  My doctor had never encountered a celiac patient and was not familiar with the disease or the symptoms.  He put me through the ringer with multiple blood tests and a colonoscopy when he found that I was severely anemic.  The doctor that administered the colonoscopy wondered why I was back for another one after just a few months after a prior screening with both colonoscopy and endoscopy.  I described the situation, and his nurse assistant immediately asked if I had been checked for "Sprue" in the previous endoscopy.  They hadn't, and did so in that appointment.  The positive blood test came back the same day as the endoscopy positive biopsy.  The doctor called me when I was traveling on business sitting in the hotel room eating a hamburger with a side of pretzels. 

    After a short conversation all the food went in the trash.  Even though my doctor was a celiac "rookie", he did extensive research, and immediately recommended that all of my children, and grand children get the blood screening. (None were symptomatic.)  Keep in mind this was 11 years ago.  2 of my three children, and one of my five grandchildren at the time tested positive. (I have two newer grand kids that have not yet been tested that I know of.  They are my daughter's, who is positive for celiac, so  they may have been.  I will remind her.)

    At any rate, my celiac rookie doctor recognized the potential of the situation and recommend the exact same protocol that is described in the article as "new".

    As an aside, other than the chronic anemia that developed after 50 years, I never had any symptoms severe enough to seek help.  There were others, but I only recognized them after I was diagnosed and researched the topic.  However, after about a year of total gluten free intake, I developed very severe immediate reactions to gluten contamination, mainly severe nausea and vomiting that would last until my system was emptied.  I now carry Zofran, when I travel, (75% of my time).  If I take it when I find out I've been contaminated, (yes, I have restaurants come to my table and tell me they screwed up), or if I develop the sudden intense waves of nausea, sweating, etc., it will keep me from throwing up, but I still feel bad for a few days after.  I highly recommend this to celiac sufferers when they travel. 







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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He 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 science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF 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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