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  • Jefferson Adams
    Jefferson Adams

    Celiac Diagnosis: Why Do One in Four Suffer a Decade or More?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 09/02/2010 - About a quarter of people who suffer from celiac disease or gluten intolerance spend a decade or more complaining to doctors before receiving an accurate diagnosis, according to a poll conducted by Coeliac UK.

    According to the poll, nearly 25 percent of sufferers consulted doctors about their symptoms for over a decade, while eleven percent of people with celiac disease sought help from doctors for over 20 years before receiving a proper diagnosis.

    People with gluten intolerance and celiac disease often suffer from persistent diarrhea, bloating and abdominal pain that is triggered by the body's immune system fighting gluten as a foreign invader. Women are twice to three times more likely to develop celiac disease than men.

    The poll also revealed that nearly 60 percent of the nearly 1,600 poll respondents had also been mistakenly diagnosed with anaemia, without even a follow-up test. Almost six in 10 were misdiagnosed with irritable bowel syndrome.

    Women being to there times more likely to develop celiac disease than men, coupled with 60 percent general misdiagnosis for irritable bowel syndrome means that women are likely being disproportionately misdiagnosed with irritable bowel syndrome.

    Doctors also commonly misdiagnosed gluten intolerance and celiac disease as anxiety and depression, gastroenteritis, gallstones, ulcers, ME or chronic fatigue syndrome and appendicitis. Many patients reported being accused of being hypochondriacs.

    Not surprisingly perhaps, one in three respondents rated their GP's knowledge about the disease as poor or very poor.

    Coeliac UK's CEO Sarah Sleet said guidelines from the National Institute for Health and Clinical Excellence (Nice) should be pushing up rates for celiac diagnosis.

    'But with around 500,000 people currently undiagnosed in the UK there is still a long way to go and it will be another 30 years at the current rate of progress before we crack the problem,' she said.

    As celiac disease runs in families, the Nice guidelines also encourage screening for blood relatives, yet nearly 8 out of 10 people polled said this had not occurred in their families.

    Why do people with gluten intolerance and celiac disease have to wait ten or twenty years or more to get properly diagnosed?

    How long did you have to wait? How did your doctor do with diagnosis? Slow diagnosis? Misdiagnosis? Tell us and we'll be sure to include some of your responses in a follow-up article.

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    I was not diagnosed until I was 60, after years (over 30) of 5 GI series, being told it was my nerves (I'm a calm person), etc. They discovered a stricture in my esophagus, so a doctor doing an endoscopy discovered that I had no villi and diagnosed me and blood test was positive. Going so long without being diagnosed, I also developed collogenous colitis, so I feel wonderful but still have diarrhea. I never did feel bad, other than always scoping out the nearest bathroom, and being very thin and anemic. I am now a normal size and have loads of energy.

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    I suffered for over 20 years until I was diagnosed as celiac. I can remember when I was very little being sick all the time and my Dr telling my mom that I just had a nervous stomach! As a young adult my stomach always hurt and I would go to the washroom 10+ times a day.. I finally found out the reason when I was 36 years old. I am so thankful that I found out and could start healing, but I wonder what damage could have been prevented. I am also a diabetic and have an autoimmune thyroid condition which resulted in my thyroid being removed.I most likely would not have those conditions if this was found out when I was little.

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    Good lord, it took 45 1/2 years before a doctor diagnosed me with celiac, and then I had to request the test, myself. He laughed at me, initially, until the test results came back. And I have been to so many doctors over the years, I've completely lost count of how many failed to help me. Come on, who had really heard of celiac Disease until about six years ago? It wasn't in the mainstream media. Since I was 17 years old, I researched diligently to find out why in the heck I felt so bad most of the time, but my symptoms were all over the page. My personal library is full of books on medical conditions, with little if anything written on celiac Disease. And I never considered I had the disease until I prayed about my problem and then read an article on About.com regarding a connection between Hypothyroidism and celiac disease in early 2005. (So, lovely, now I have not one but two diseases.) I suppose we give doctors too much credit for being intelligent and looking out for our well being.

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    Article worth contemplation, but I have few complaints as I had only been having symptoms about 7 yrs. before diagnosis at age 60. It was after I retired from teaching early, went through menopause with various sleep disruptions, and refused to take various hormone treatments that I was finally tested as Hypo-thyroid. After this was treated with Synthroid, I still was having diarrhea symptoms, especially after eating oatmeal, so I stopped that. My thyroid seemed stable, but was still treated for severe acid reflux, with endoscopes every 2 yrs. Finally, my GP referred me to my GI doc when blood tests showed anemia. They both were looking for celiac when I was diagnosed in '07.

    The endoscopy included a biopsy, pictures of flattened villi, and the celiac sprue blood antigen test. I sometimes still have symptoms, but once I ate gluten free I've taken the blood tests & been normal (3)every time.

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    As a child I had stomach aches, but I didn't like a lot of the foods other ate. I ate Rice Krispies, not Wheaties, I never ate pizza, just liking the cheese on top, and I never ate sandwiches, liking salads better. Pasta, only rarely, not something I liked. Was it instinct? I don't know. However, I never met a brownie I didn't like, and quite a bit of gluten still came my way, with my delight.

     

     

    I had skin problems, and my father said I was chubby, though now looking back I see a bloated belly. I didn't do sports like the rest of my family. I was a bit depressed as a teen.

    But generally, I was smart and well liked. Life seemed "normal."

     

    Looking back everything takes a different tone. My height is less than the rest of my family. My legs always felt weak (from poor nutrient absorption). My pimples on my chin were all related to nutrition troubles, poor absorption.

     

    At 35 I had a terrible fracture of my foot /ankle while playing touch football game with parents and kids. I asked them "do I have bone density issues." AT 32 no one was interested in testing, and they said no. At 50, I discovered I do have low bone density, and when endocrinologist did a celiac blood test (tTg) normal was 0-19 mine was 181. No other testing for bone issues was positive. My bone health seemed to be completely celiac related. Since then I have been gluten free. Skin is improved, though now other parts of my face get autoimmune reactions. I am finding gluten-free not quite enough, though it has helped many minor symptoms, the years of irritation to my body make some things slower to heal.

     

    Dermatologists were the worse, just saying an area of persistent itch was just dermatitis. And they didn't know about DH and didn't know how to do proper biopsy.

     

    I have lost faith in the expertise of doctors. I do lots of research and do my best to help myself and sort this out.

    Purified vit C from BEYOND HEALTH has helped me alot to heal.

    Still looking for more answers.

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    My son was finally diagnosed with celiac when he was 17 and missed most of his senior year of high school. He was lethargic and could hardly get out of bed. When ever he would eat gluten he would get sick to his stomach but we never made the association with wheat, rye or barley.

    Finally his doctor, who coincidentally had a brother who suffered from celiac disease, suggested a blood test. When it came back positive she suggested that the rest of the family be tested and I discovered that I have it too.

    I was 52 at the time and had been suffering from dermatitis herpetiformis for about ten years. I had been to both an internist who referred me to a dermatologist. She took a biopsy and said that it was related to eating foods with yeast such as beer, blue cheese and bread. I cut those items out of my diet, yet the sores persisted until my son was diagnosed.

    We then immediately went on a gluten free diet and our symptoms disappeared. My son is a healthy junior in college living independently cooking for himself.

    I attribute early misdiagnosis to lack of awareness of the disease not some cynical plot that doctors may have because they can't prescribe a costly pill to solve the problem.

    You are so right. I believe it is now getting a wider attention and there is a greater awareness even in the food industries. You can get gluten free cereal, pasta, even medications have it on their labels. I'm sorry for those who feel it is a plot among doctors because they "don't make money off their disease." I see patients get tested for this disease all the time in my field, I'm sure it's because of a greater awareness.

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    I suffered a miserable childhood with the diarrhea and anemia, depression and weight loss. As a teenager I was accused of being bulemic, and/or on drugs. As an young adult I was 97 pounds after having a baby, and what made the diagnosis was the fact that I worked as an assistant to a GI doctor, and found the information about celiac disease in one of his textbooks. I pushed the issue and finally he agreed to test me and thank you very much found that I have it. Now as a nurse, I had my whole family tested and half of us are now on a gluten free diet and thriving. I was misdiagnosed with IBS prior to that, but also did have ulcers and gallbladder problems. Its all inter-related.

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    Yup...suffered for years and always thought it was a "nervous tummy". Finally met a functional medicine doctor who's first words out of her mouth were "I'll bet you are gluten intolerant". Sure enough, but even when I went back to my HMO doctor with the test results and some info - he still refused to diagnose me with anything other than IBS...needless to say, I do not share this info with any HMO docs and I monitor my diet carefully.

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    I have gluten sensitivity, and was able to self-cure once I found that out. But it took 5 years of going to 7 different doctors, including a gastroenterologist, before I received a food allergy test after mentioning my problems to my CHIROPRACTOR. And yes, the other doctors kept giving me pills instead of helping me find out what was going on (all said I had "irritable bowel syndrome". Even my allergist's "gold standard" test for celiac disease came back negative, but eliminating gluten for months saved my life. One thing that I don't hear mentioned on celiac.com, however, is something regarding the fact that this sensitivity coincides with childbirth for some women. It did in my case (first surfaced after birth of first child, went in remission during pregnancy, resurfaced after birth of second child), and I have heard of it happening with other women after childbirth. Sounds like a similar pattern as other immune system related diseases. Any studies on this?

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    Same issue with me. My Coeliac started when I was 21.

    I was told I had IBS..... then when I lost so much weight due to malnutrition (42kgs was my weight at one point) I was told I was anorexic and just didn't want to admit it to myself... no one believed me, especially my family.

    When I told them I was eating, they then decided I was Bulemic It was hell.

    I was put on all kinds of necessary anti depressants.

    I even lost a job due to the fact that I was sick so much.

     

    I later found out from the other side of my family that one of my distant aunts had it.... so I asked the doctor to check for it.

    He didn't think it was necessary, but I managed to convince him.

     

    8 years later and I've been on the diet for a long time now.

    I'm a million time better than I was, but I still suffer from vitamin deficiencies and all the problems that go with it, no matter how careful I am, not matter how I add vitamin rich food into my diet, and I take gluten free multivitamins every day.

     

    I live in New Zealand, and the doctors here don't even think to check for this unless there's a documented event of it happening in the family, and even then they look at you like you're crazy until you convince someone to test for it.

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    Think the under-diagnosis might have to do with the fact that the only treatment for the condition is dietary, and not only are physicians generally woefully undereducated about diet but the profession does not stand to make money by diagnosing celiac/gluten sensitivity, as there are no drugs/procedures to prescribe for it?

    That is it exactly! Shameful, but true.

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    I waited about 12 years wherein I was repeatedly misdiagnosed with stress, IBS, dumping syndrome, Bile Salt Diarrhea and moreover, just had my symptoms ignored. I lost 3-4 years of work during that time because my diarrhea was so bad, I couldn't leave the house. Usually, these episodes would follow my having contacted a stomach virus that hung on for literally months and months or, a cold that just completely knocked me off my feet. No one seemed to take me seriously until I developed severe Colitis two months ago following a stomach virus. The doctor I had been seeing was not in his office and fortunately, the PA who filled in for him ordered the blood tests. Thank goodness, my 5-6 bouts of daily diarrhea stopped once off gluten! I am having a host of other/new problems concerning digestion, fatigue, skin rashes and allergies to other foods I never knew bothered me before, but I no longer have my old problems. Looking back, I can't imagine why during all my visits to the doctor and between all the blood tests and trips to the dietitian, no one ever mentioned gluten to me before. I was so lost. This disease robbed me of my forties.

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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 biology, anatomy, medicine, science, and advanced research, and scientific methods. 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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