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  • Jefferson Adams
    Jefferson Adams

    Woman Discovers Her Celiac Disease with 23andMe Gene Test

    Reviewed and edited by a celiac disease expert.

    DNA testing services can help highlight genetic risk for certain diseases, including celiac disease.

    Woman Discovers Her Celiac Disease with 23andMe Gene Test - Image: CC BY-SA 2.0--nosha
    Caption: Image: CC BY-SA 2.0--nosha

    Celiac.com 10/22/2019 - Many people use DNA testing services, like 23andMe, to check on their ancestry. However, such sites can also be helpful in revealing genetic risk for certain diseases. 

    Take the case of Carol Mayes, a West Virginia woman, whose 23andMe test results led to the discovery of her celiac disease. Once tested, the simple saliva sample led Mayes to discover that she had an elevated risk for celiac disease.

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    “I always had migraines that never went away and my dad said, ‘Why don’t you do Tylenol?’ I said, ‘Tylenol doesn’t work for me,'” Mayes explained. “I always try to donate blood and each time I can never do it because my iron was always low."

    When she put the DNA results together with her medical history of migraines, and low iron in her blood, Mayes pressed her doctor for a celiac blood test.

    "I asked my doctor, ‘Can you test me for Celiac disease?’ And I came back with my test results and I was positive for celiac disease.”

    Services like 23andMe can reveal genetic risk factors for many diseases, including Alzheimer’s, Parkinson’s and certain types of cancer, though they do not typically diagnose any health conditions.

    The IRS recently permitted tax deductions for DNA tests, like 23andMe, that are used for medical purposes.

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    My 60 yo husband was suffering from near kidney failure and his body was almost always covered in rashes. After years of DR visits, his sent him to a dermatologist that thought he had scabies. But the scraping came up with dermatitis herpetiformis HLA-DQA1/HLA-DQ2.5. Not knowing his birth father he decided to do the 23&me DNA, so did I, our daughter and granddaughter. Sure enough all 3 showed up with high celiac probability and all 3 were suffering from various forms of it. With recent update in the genomes, I, too, carry the HLA-DQB1/HLADQ8, which both our daughter and her daughter carry, too, genome combinations. It literally was a life saver finding out that something as simple as going gluten-free could not only change the quality of their lives, but very likely saved them.

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    I wrote one of the previous messages about my husband and family having celiac and confirmation by 23&me test. I would also like to add, that many DR's are still under the impression that taking the blood test is the only way to get accurate results, this may be true, but one has to be eating gluten for months before the test. We all went gluten-free right away and saw results. We know it is celiac because every time one of us gets into gluten we get sick and/or rashes. Yet, we are constantly told in order for a DR to prove we have celiac we have to do the blood test and put ourselves through excruciating pain, not worth it!

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    5 hours ago, Guest Wayne@gojade.org said:

    I wrote one of the previous messages about my husband and family having celiac and confirmation by 23&me test. I would also like to add, that many DR's are still under the impression that taking the blood test is the only way to get accurate results, this may be true, but one has to be eating gluten for months before the test. We all went gluten-free right away and saw results. We know it is celiac because every time one of us gets into gluten we get sick and/or rashes. Yet, we are constantly told in order for a DR to prove we have celiac we have to do the blood test and put ourselves through excruciating pain, not worth it!

    Yes, the celiac testing process is 12 weeks of eating gluten before the blood antibodies are drawn, or 2 to 4 weeks before the endoscopy is done.  It's definitely better to do all the celiac disease testing before going gluten-free.  Gene testing is interesting but it doesn't prove a person has celiac disease.  Around 30% of people have the celiac gene/(s) but only 1 to 3 % develop celiac.

    Our bodies are often pretty good at letting us know if gluten is a problem though.

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    In 1998 I started to have constant diarrhea. I was scared to go anywhere. My favorite food was grape nuts, bread, carrot cake and everything else wheat. Doctors did the barium tests. Three by different doctor. I am clean as a whistle.Of course I was. How may doctors just thought I was just a sicko. IBS. One last doctor told me it may be diary. Well, now I know it was the ice cream cone, the beer, the bread with the dip. Never able to travel, afraid to go anywhere. I joined 23@Me two years ago and my life has changed. Now I know what it is. I try not to eat wheat, but I do now, just the things I really want to eat. I take stinging NETTLEs. Two in the morning and two more if I know I will have wheat and two more before dinner also if I know I'll will want to eat wheat. Nettles stops immune reactions, like allergy. Well I was taking it for the winter months and one evening I ate Italian food with lots of bread and pasta. I was not sick the next morning. I have been on stinging nettles almost 3 years. I have been on three cruise ships, Scotland, Ireland, bus tour. Norway cruise ship who specializes in food for celiacs.I would eat 5 desserts, best gluten free cakes I ever had. I am 38% Scandinavian. Everyone tells me that's where I got it from.Even on the Norway cruise people I was telling them about Nettles. I got it later in life. Around 22 years ago.I knew where every bathroom was around town. Accidents occurring with no warning.Sometimes the pains are so bad it like child birth pains. I'll hear a rumble and a squirt of bile and I knew I had maybe 10 to 15 minutes. I think Noni works also. I really like Nettles by Natures way. I take two in the morning just because, never know. Sometimes I don't take enough or soon enough.Or, I forget and eat the wheat and do pay for it later.Nettles can lessen the symptoms if you take it in time before the temptations. I keep the whole bottle with me. So, I do try to not eat wheat, but there are temptations and I am usually just fine. I am thinking it might work for diary. If someone would like to experiment with a diary allergy. I am just the messenger. It's up to you to just do it and find out. I feel sometimes people think are used to being sick and won't try it. They are used to it being their way of life.I don't want the attention and fuss.It's embarrassing! Not for me!!!


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    And I found out through 23 and Me that I was not susceptible to celiac due to my genes.  But my immune system was compromised due to a bad case of West Nile Meningitis in 2012.  Celiac can develop from a compromised immune system (which I still have).

    A year after having WNM, I developed an intolerance to dairy; 6 months after that to gluten.  6 months after that I developed an intolerance to corn.

    I have since been able to reintroduce dairy back into my diet once my body healed on a gluten/corn free diet.  I will never be able to eat gluten or corn again.

    It was good to know that the rest of my family was not at risk.  Thank you 23 and Me.

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  • About Me

    Jefferson Adams

    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 2,500 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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