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    Jefferson Adams

    Can You Guess the Most Common Misdiagnoses for Celiac Disease?

    Caption: Image: CC--Jared Rodriguez/truthout

    Celiac.com 05/22/2015 - The fact that celiac disease is commonly misdiagnosed will come as little surprise to anyone who's ever gone through what can often be a long, circuitous process of getting diagnosed. Celiac symptoms can be vague, and can mirror symptoms of numerous other conditions.

    Even though celiac awareness is improving, and blood screens are becoming more common, misdiagnosis remains common for people who are eventually diagnosed with celiac disease.

    Can you guess the most common misdiagnoses that doctors make for patients with celiac disease?

    The most common misdiagnoses include:

    1. Irritable bowel syndrome: People with celiac disease are often told that they have irritable dowel syndrome when they actually have celiac disease. In fact, IBS is the most common misdiagnosis for people with celiac disease.
    2. Inflammatory bowel disease: Coming in a close second to IBS, inflammatory bowel disease is another common misdiagnosis for people who actually have celiac disease.
    3. Gastro-esophageal reflux disease: People with GERD don't have any higher rates of celiac disease than the rest of the population. However, to be fair, a pretty high percentage of newly diagnosed celiac patients have reflux and/or esophageal dysmotility; which might explain the high prevalence of reflux symptoms in celiac disease patients, and the common misdiagnosis of GERD.
    4. Ulcers: Ulcers are often wrongly suspected, well before celiac disease is finally diagnosed.
    5. Viral gastroenteritis: Another very common thing doctors suspect long before they suspect celiac disease, is viral gastroenteritis.
    6. Chronic fatigue syndrome: Fatigue is a common complaint of many people with celiac disease, so maybe it's understandable why many people with celiac disease find themselves with a misdiagnosis of chronic fatigue, rather than an accurate diagnosis of celiac disease.
    7. Allergies: Many people find themselves wrongly diagnosed with environmental allergies long before they are diagnosed with celiac disease.
    8. Parasitic infection: Celiac disease symptoms can mirror symptoms of certain gut parasites, which is one reason that many people with celiac disease find themselves being checked for parasites long before they get checked for celiac disease.
    9. Gallbladder disease: Celiac disease symptoms can mirror symptoms of gallbladder disease, which is why many people who actually have celiac disease find themselves diagnosed with gallbladder problems.
    10. Colitis: Another common culprit for misdiagnosis is colitis, which shares many symptoms with celiac disease.
    11. Cystic fibrosis: Many people don't realize that in a number of cases, the symptoms of celiac disease can lead doctors to suspect cystic fibrosis, rather than celiac disease, thus prolonging diagnosis, treatment and recovery.
    12. Psychological dysfunction: In many cases, celiac disease symptoms can be so hard to pin down that doctors find themselves wondering if the symptoms aren't really in the patient's head. In their quest for diagnosis, many people with celiac disease have been referred to a psychologist, rather than evaluated for celiac disease.
    13. Lactose intolerance: Lactose intolerance is a common misdiagnosis in celiac patients, because the mucosal damage from gluten leaves them unable to digest lactose-containing products.

    In addition to being frustrating and painful, misdiagnosis of celiac disease is a big deal because, left unaddressed, the damage done by the disease continues unabated, and can snowball into further health and wellness problems.

    Have you, or anyone you know, suffered through misdiagnosis before being diagnosed with celiac disease? Share your story in our comments section.

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    I remember having stomach issues as far back as age 6. Through the years I've seen doctors for multiple stomach complaints as well as other issues such as thyroid and infertility. I've been told I had spastic colon, IBS, anorexia and that I was just stressed out. Not until I was 50 did I finally get a diagnosis of celiac disease.

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    My husband was misdiagnosed with 'anxiety attacks'. Symptoms started in college, and he always got really sick after parties- pizza, beer, barbecues, cake...therefore it must be anxiety.

    It wasn't until our daughter (20 Years later) was failure to thrive & had all the same reactions as daddy - that we finally got diagnoses of celiac. After she tested positive, it was just a matter of begging to talk my husband into getting tested. We honed right in when our son started showing signs too. It is undoubtedly genetic!

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    I was first screened in 1972, as my elder brother was diagnosed, but the methods of testing then were ineffective. As a result I wasn't diagnosed, and grew up with general bad health which I just accepted, in particular a lot more than my share of colds and ear infections. I also believe it significantly slowed my physical and mental development. In 1994 I went to a doctor with classic symptoms of coeliac disease, but was misdiagnosed again as the doctors weren't looking for coeliac disease. My health continued to decline for another 8 years, and it wasn't till I asked a doctor to test me specifically for coeliac disease that I got the correct diagnosis. It took me more than 6 Years to recover, during which time my weight increased 20 kg, and that is why I believe it was affecting me for all my life before diagnosis.

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    I think I was diagnosed with most of those on the list before I finally figured out on my own it might be celiac and then found a Dr. that confirmed it. All the time, money and aggravation spent while still eating gluten...and most doctors wouldn't even test me for it because they thought it was something else. Maddening.

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    I was first diagnosed with night time gerd. After two years I told the doctor that I did not believe I had gerd and asked what else could be causing these symptoms. She said I could have Esophageal cancer of Stomach cancer so we did biophysics but didn't really come up with anything.

     

    I decided to change doctors. I finally found a young doctor who was a licensed M.D. and a licensed NP. It took him about 3 months to suspect Celiac. So I finally got my diagnoses. It has taken me 5 to 6 years but I continue to improve yearly, this even though I am now 77 years old.

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    It wasn't until I was diagnosed with osteoporosis that I began in earnest to do my own research into why I was not as healthy as I should have been. I had always eaten a very healthy diet with lots of fruits and vegetables and very low in sugar and processed foods plus worked out 3 times a week and still had weak bones. The internet led me to the possibility of celiac disease and I had to beg a new gastroenterologist for the blood test. My GP was stunned when the extremely positive results came back. My old gastro had said IBS 35 years ago and everyone since just believed him!

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    I was diagnosed with GERD, allergies "to everything", obesity (meaning 'you're lazy and you eat too much'), undetectable kidney stones, and "it's all in your head," in the decades before my celiac diagnosis. By then I had lost motor skills, balance, cognitive functions, hair, and nails. It's hard not to feel bitter about all the years of damage when I was trying so hard to be responsible to go to the doctor.

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    Guest Deborah Hammond

    Posted

    Yes, indeed. I had symptoms for many years. As a child I remember my dad taking me to the ER and being told they found nothing wrong. I had passed out and was in elementary school. I never had much energy and often had bronchitis. As a young adult I began seeking answers from doctors. First I was given muscle relaxants. Then drugs for depression. Then a series of visits to gastroenterologists led to six endoscopies. They never found anything, until the sixth one, because none of the first five docs went through the stomach into the small intestine. They just weren't looking for it. In fact, all six times I was told I likely had a bleeding ulcer or stomach cancer. Even the last time! Because I was bleeding internally. The doc who finally diagnosed me said he had been told in medical school he'd probably never see a case but he found he was diagnosing one a week. Once he saw a case, he kept looking. And in biopsy it looks like nothing else! SO grateful to know and to be gluten free. I was diagnosed at 52.

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    Should be required reading for all med students! I used to sit in the doctor's office and cry because it couldn't be normal to be so tired all the time. Did sleep studies, etc. Even had surgery to fix a deviated septum. No effect. Had a colonoscopy to check for bleeding because massive iron supplements had no effect on my anemia. Finally at age 56 a blood test showed too many platelets and I was sent to a hematology oncologist. Part of his workup was a lung x-ray. The radiologist suspected osteoporosis from looking at my spine. Bingo! My primary finally was able to put together that I was not absorbing calcium and iron and did the blood test for celiac disease. I have been strictly gluten free since them. Within weeks my fatigue was gone. Now I have so much energy I don't know what to do with myself!! With treatment, my bones are getting better and my anemia is almost resolved.

    The awful part of this? When I went back to the GI doctor for an endoscopy to validate the blood test, he told me that my first colonoscopy ten years before had showed that I had celiac disease but the he dismissed it because I had no digestive symptoms.

    Why can't the simple blood screening test be standard for everyone? And doctors should know that while many people do not have standard symptoms internal damage is still being done.

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    I was diagnosed with ulcers, then IBS, then IBD. It wasn't until I met someone with celiac and talked to them and then went to my doctor and demanded to be tested that I got the right diagnosis. Considering the fact that I have TWO other auto-immune diseases that they already knew about, I'm still pretty ticked off that no one thought of it sooner. Auto-immune diseases often come in groups.

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    I was always "sickly" as a child, but even into my 20's I was constantly diagnosed with "the flu". Every time my stomach ache would get so bad I had to go to the doctor, they would always diagnose it the same way. After a while I did get tested for parasites, but it wasn't until I was in my 40s, had moved, and ironically had a "substitute" doctor because mine was on vacation, did I finally get tested for celiac...

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    My grandson was just diagnosed with celiac disease.  I woke up this morning hoping it was just a dream.  We have a large family, so a lot of occasions with lots of food favorites.  I combed the internet last night for yummy gluten free recipes I can make for him.  He not only had celiac, but also walking pneumonia.  He is going to be 14 in a couple of months.  He took it pretty well.  His mother told him and both of us (his grandparents) at the same time.  I kept pretty upbeat and started naming all the things he could still eat as his mother told him that this would change his life and it was permanent.  I told him I would take him to the store and show him how to shop, read labels etc and next year I will teach him to cook. (I homeschool him and his 3 sisters, which is really a good thing now especially. If anyone has suggestions on good sites other than pinterest to go for this, I would be very appreciative. This will change my cooking habits for them since I really don't want him to watch his sisters eat yummy things that were his favorites, while he eats something else.  

     

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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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