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  • Jefferson Adams
    Jefferson Adams

    The Top Ten Physical Complaints from Celiac Patients

    Reviewed and edited by a celiac disease expert.

    Celiac.com 01/16/2015 - Most people with celiac disease suffer from classic symptoms like weight-loss and diarrhea before diagnosis, right? Wrong. In fact, the most common medical issues for people with celiac disease might really surprise you.

    Photo: CC--Kirian FosterA team of researchers who recently looked at data on 770 celiac patients admitted to S. Orsola-Malpighi Hospital from January 1998 to December 2012, found that even though 80% of people with celiac disease have symptoms other than diarrhea, only 1 in 3 people with celiac disease shows classical malabsorption symptoms.

    Notably, two out of three people with celiac disease show non-classical symptoms. The majority of people have non-gastrointestinal symptoms. In fact, the top ten medical complaints of people with celiac disease are:

    1. Osteopenia/Osteoporosis—a full 52% of patients with celiac disease suffer from osteopenia/osteoporosis.
    2. Anemia—about one in three celiacs (34%) suffer from anemia.
    3. Cryptogenic hypertransaminasemia—nearly one-third (29%) of people with celiac disease, have what is called cryptogenic hypertransaminasemia.
    4. Diarrhea is, in fact, a common gastrointestinal symptom of celiac disease, but believe it or not, only 27% of people with symptomatic celiac disease experienced diarrhea.
    5. Bloating—20% of celiacs complained of bloating prior to diagnosis.
    6. Aphthous stomatitis—18% of people with symptomatic celiac disease had canker sores as one of their symptoms.
    7. Alternating bowel habit—15% of celiacs with symptoms have alternating bowel habit
    8. Constipation—13% of celiacs have constipation as a symptom.
    9. Gastroesophageal reflux disease—About 12% of people with celiac disease suffer from gastroesophageal reflux disease.
    10. Recurrent miscarriages—just over one in ten (12%) people with celiac disease experience recurrent miscarriages

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    WOW! I had major problems with canker sores for 10 years prior to being diagnosed with celiac. As I look back, now for the last 20 years of being gluten free, I have RARELY had a canker sore! I have never heard there was a connection.

    Me too. It has been such a blessing to be mostly canker free.

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    Osteoporosis is common in most GI disease,because of malabsorption of calcium and Vitamin D.The thing that surprised me was miscarriage,which is strongly connected to folate and methylation problems,like MTHFR mutations.

    The MTHFR mutation can be tested for and probably should be on a lot more people. Good points.

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    Add hycosamine phazyme and Pepto Bismal to the Zofran and you can actually get up go to work and even eat. MMJ concentrates help tremendously as well.

    Are they all prescription drugs other than the Pepto?

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    Osteoporosis is common in most GI disease,because of malabsorption of calcium and Vitamin D.The thing that surprised me was miscarriage,which is strongly connected to folate and methylation problems,like MTHFR mutations.

    I have every symptom of celiac disease. But I had a GI breath test. And I was told I have (libo) I know I have had this all my life. I have always been anemic. And vitamin D deficit, diarrhea after every meal. And what surprized me was the miscarrages. I had 9 miscarrages. Went to every specialist everyone said they couldn't find any thing wrong with me. Now I know celiac disease is an autoimmune disease. When my body sees gluten it doesn't recognize it & pushes it out. I think it did the same thing with the sperm. Didn't recognize it, so rejected it. Took me 35 years to figure that one out.

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    What is "Cryptogenic hypertransaminasemia"? I don't understand what I find on the web. Some kind of liver dysfunction?

    Before my diagnosis of celiac disease in 1996, my liver enzymes (noted in a blood test) had always been elevated, indicating inflammation of my liver. These "markers" were double to triple the "normal" values. Because I was a student and lived in different states getting my undergrad and graduate degrees, I really never followed up on it. The "hypertransaminasemia" refers to these blood tests which indicate a "swollen" liver. Medical personnel always asked me if "I did drugs, took a lot of NSAIDS, or drank a lot of alcohol." These things can cause the liver to swell. I did drink a little at the time, but that was it! It was the inflammation of my intestines that was also irritating my liver because of my undiagnosed celiac disease! I'm happy to say I am well and my blood work is fine now that I live the gluten-free life!

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    I can check off all but one on this list of complaints that really are symptoms and disorders associated with celiac. Never had kidney stones but before my diagnosis had for several years a slightly elevated creatinine. I saw kidney specialist (history of kidney cancer in family); doctor thought it was due to my reliance on ibuprofen for so many years that I took for joint pain related to celiac. (Surprised joint issues are not on the list but perhaps this was a younger crew of celiac patients - and often even with younger and older patients with celiac there is no official RA or other arthritis diagnosis.) Magically (hah!) six months or so after my celiac diagnosis on a gluten-free diet the creatinine returned to and has remained within the normal range.

     

    Kidney stones are listed on the UChicago list of symptoms and disorders associated with celiac disease. See their site and search under Physicians for this symptom list. It is out there one the web on other sites as well.

     

    Keep in mind this disease can affect some, a few, or just about all body systems, and it is a chameleon that can change its presentation - as the symptoms can move from one area to another over time. For example, when I was younger anemia and wrist tendinitis were big problems, now not as much. Right before my diagnosis blinding headaches started. Now even with a contamination, I hardly every have a headache. Since healed, the GI symptoms - some are very different while others are identical to before my diagnosis. A national reporting database of symptoms is critical to be developed so that the rates of these within ages and gender can be published.

     

    After three years of good health, had a tough year with some contamination hits (gluten and seaweed-additives also cause me problems) - and interestingly enough for the first time ever at my last annual physical one of my liver enzymes was elevated. So I plan to send this piece along to my doctor. There is so much known and so much unknown about celiac disease we have to help educate those who treat us - especially family physicians or internist who do not specialize in this but whom we see for our general care.

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    Guest Lucille Cholerton

    Posted

    My symptoms 25 years ago, before I went gluten free were sinusitis, migraine headaches, rheumatoid arthritis, constipation, and anemia. My 3 children, between them, suffered from post nasal drip, sinusitis, childhood irritability and aggressiveness, Sjogren's syndrome, vitiligo, tingling and numbness in fingers and toes, anaemia, constipation and speech stammering! I am really pleased to report that all these symptoms cleared up within 6 months on a strict gluten free diet.

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    My symptoms 25 years ago, before I went gluten free were sinusitis, migraine headaches, rheumatoid arthritis, constipation, and anemia. My 3 children, between them, suffered from post nasal drip, sinusitis, childhood irritability and aggressiveness, Sjogren's syndrome, vitiligo, tingling and numbness in fingers and toes, anaemia, constipation and speech stammering! I am really pleased to report that all these symptoms cleared up within 6 months on a strict gluten free diet.

    This input from all of you has helped me so much!

    More than any doctor.

    I have experimented on my own, recently, and have found a little improvement. Now I am going to try the diet longer and keep track of what is working and what I have to eliminate.

     

    Thank you!

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    Great article and excellent feedback from everyone. I was diagnosed with celiac disease 4 months ago during an endoscopy. I suffered from gastro problems for probably 20 years prior to this - alternating constipation and diarrhea, excessive bloating and gas. I take thyroid hormone for thyroid problems and have arthritis and osteoporosis. I know now that all of these health problems are as a result of celiac disease. I am disappointed that my doctor had never even suggested that this could be the reason for all of my problems. I have been gluten free for the past 4 months but the gluten free diet has not improved any of my symptoms. I read an article recently which indicated that for patients who are older and also if the disease has been long standing, it could take up to 2 years for any improvement. The biggest problem I find is whether all the ingredients are listed on food products. None of the food companies I have contacted have been able to assure me that no cross-contamination has occurred in the preparation of their food products. I will be tested again in a couple of months to see what progress I am making. If my numbers don't go down, I will be very upset.

     

    Thanks.

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    Major FATIGUE. Funny how that is when you malabsorb. Rather interesting that one was omitted, although of course docs all say it is "NONSPECIFIC". In my case, it was specific to HLA-DQ8. JFK used to mention it in his speeches too:"We must not be fatigued." Some say that was because of the fatigue that went along with his celiac. I agree.

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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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