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Can You Guess the Most Common Misdiagnoses for Celiac Disease? 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.

Image: CC--Jared Rodriguez/truthoutEven 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?

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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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11 Responses:

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said this on
22 May 2015 9:53:30 AM PDT
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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said this on
24 May 2015 3:43:49 AM PDT
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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said this on
25 May 2015 6:09:04 AM PDT
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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said this on
25 May 2015 1:21:03 PM PDT
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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said this on
25 May 2015 2:21:21 PM PDT
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.

D. Johnson
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said this on
25 May 2015 7:09:54 PM PDT
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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said this on
25 May 2015 8:43:12 PM PDT
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.

Deborah Hammond
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said this on
25 May 2015 11:01:08 PM PDT
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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said this on
26 May 2015 5:06:35 AM PDT
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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said this on
26 May 2015 8:51:11 AM PDT
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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said this on
26 May 2015 12:14:51 PM PDT
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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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.