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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.


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    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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    Celiac Disease should be included in medical school curricula and how it affects all disciplines, in addition to Pediatrics. Non-responsiveness to standard treatment is a hallmark every physician need consider.

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    Celiac Disease should be included in medical school curricula and how it affects all disciplines, in addition to Pediatrics. Non-responsiveness to standard treatment is a hallmark every physician need consider.

    When I finally had the endoscopy and the doctor said I had celiac, I said, "No I was tested 10 years ago and the test was negative." He said, "they misread the test!" In that 10 years, I went to at least 20 doctors and wasted lots of time being sick. But the doctor said, "At least you had 10 more years of drinking beer and french bread."

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    I suffered from GI problems since my late teens. I went to different GI doctors and got different diagnosis. First, it was acid reflux. I did everything they told me and my problems continued. Then, they told me it was a bacteria in my stomach and I had to be in a treatment of something like 8 pills to kill it. After the treatment the doctor said that the bacteria sometimes does not die and I just had a crummy esophagus. After, a few years I went back to another doctor who told me that I had IBS. He gave me a medicine that helped and I felt like I could not live without this pill but my problems did not go away. Over the years they got worst. I had Policystic ovary syndrome, Asthma, constant diarrhea, wicked stomach pains, fatigue, weight gain, allergies, infertility, etc. at age 30. I could not bear the pain and made another appointment and demanded that I had an endoscopy and colonoscopy done. When, the results came back the doctor told me that I was lucky that they found out what I have at a young age because most people are not diagnosed until they are in their 60s. She also said that it was good that she ordered a biopsy because I was at an early stage of the disease and most of the time it goes undetected with just an endoscopy or colonoscopy. I also had the blood test done and it come up positive. I feel so much better with out the gluten and when I have it I pay 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's right...one doctor I talked to said that only very educated people can follow a gluten free diet!

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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?

    I also had celiac surface immediately after childbirth. I have learned since that four triggers for women are pregnancy, childbirth, surgery, and stress. I was not diagnosed as I thought my difficulties were related to the complications of delivering a very large baby. When I did start trying to get medical help, it was a decade for a diagnosis. Thankfully, my brother, an MD in Nepal, diagnosed me correctly from the other side of the world. I had been trying to believe the AMA book which at that time said one in 10,000 had it and thought it impossible to be so unlucky! He had told me two years earlier, in spite of that, that he thought I had it. Thank you , brother!

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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?

    I agree there definitely should be a medicine that you can take for it. I'm 14 and I just found out I have it and I just started the diet.

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    Krista - my story is quite similar to yours. I found out at 42 years of age after suffering terribly my entire life. I was extremely angry at first. As I tell people "celiac disease does not bother me, it's that I spent a life time so sick & developed many other health issues that plague me daily". It all could have been prevented. Two of my children were born 2 & 3 months premature, now they know why!

    I do know diagnoses is getting better, which is encouraging - but we still have a long way to go. A rheumatologist was the doctor that diagnosed me 6 years ago - I think of him often and what a blessing it was that I ended up in his office. I often wonder if I would have had a diagnoses yet or not if I had not happened upon him. My endoscopy showed severe atrophy of the small intestine - the gastroenterologist said I definitely had it as a young child. I also had iron deficient anemia as young as 7 & 8 years of age.

    I am encouraged with the amount of publicity Celiac Disease is getting and realize the day is coming that people no longer end up spending a lifetime sick & spending undo dollars trying to find out what is wrong. However, that said...I do think people viewing this as a fad diet is comical! I would love to go shopping with them & see if they really are educated at reading labels, including everything we put into our mouths ex; medications, etc.

    Thanks to Celiac.com and many other great celiac websites, we are all gaining more knowledge everyday.

    Well, my story is very similar. I started suffering when I was 5 and got my appendix taken out, was that necessary? I guess I will never know. But since then, I have been sick all the time. Every year my parents took me to another "specialist" who put me on another diet but the troubles continued. At age 13 I had seizures. being adopted everybody thought I was depressed, I was sent to the hospital in so many occasions with very bad anemia, so bad that at one point I needed 3 transfusions to get back to normal. Always tired, sick, with pain. I had dermatitis heprpetiformis, no one knew what was wrong with me. After my older son was born, I ended up at the hospital again. I am 5'5" and my weight was 80 lbs. Doctors thought I had leukemia, then diabetes, and for a week they did all sorts of tests and they were still puzzled. But of course, they will feed me crackers.

    Finally on day 5, the gastroenterologist came into my room and said he thought I could be celiac. Did the endoscopy and finally got my right diagnosis.

    Sometimes doctors are so quick to "judge" us instead of listening and paying attention. I suffered all my life but now I am healthy and happy. It has been 21 years since I have been diagnosed and since then my life changed. Following a gluten free diet is great! yes, at the beginning can be a bit challenging but let me tell you the benefits far outweigh the troubles. A gluten free diet keeps you healthy and you will be able to enjoy eating again and feeling so good with your body and yourself.

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    So much information in all your comments. 4 years ago my OB Gyn suggested my symptoms were possibly gluten intolerant, and to eliminate glutens and wheat from my diet for several months, then reintroduce and test it out. I am very thankful for her attention. When I reintroduced wheat several months later, my reaction was severe. I'm gluten free now and feel so much healthier. My daughter, 22 years old is also gluten intolerant. My symptoms included bloated stomach, stomach and intestinal cramps, severe constipation, fuzzy thinking, fatigue, isolated skin rashes on my upper arms, sharp hip joint pain, infertility via blocked fallopian tubes resulting in 2 ectopic pregnancies (luckily pregnancy with daughter was a success), appendicitis as a young adult. I'm 58 now. During college the chronic constipation was treated as anxiety, given belladonna phenobarbitol for awhile (didn't like), colonoscopy showed no abnormalities, told to eat more fiber, whole wheat breads, etc. 15 years later other doctors again tried to find reasons, another barium enema and colonoscopy, all okay, told anxiety. That was not helpful. So self diagnosed daily for years, read nutrition books, read up on vitamins, took over the counter meds, exercised a lot, ate lots of fiber, gave up on doctors for this ailment. I'm also intolerant to dairy, so use rice milk. It was during menopause that my OB identified my symptoms, and I'm daily thankful to her! And, I value this celiac.com website and all the information!

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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?

    I see many love to point fingers, but the fact of the matter is that it was misdiagnosed because it was misunderstood. When I was in my medical program just 10 years ago the classic description was that of a wasting disease with severe diarrhea as the main symptom, failure to thrive, etc. There are so many other presenting symptoms that masked the actual source of the problem, that doctors were simply unaware. I predict that in the next ten years new medical grads will be much more informed. Remember, rare things happen rarely, and for a long time this was thought to be rare. I practice medicine, and I'm good at it. But the information just wasn't there, and it takes a long time to spread. Also, look at the shortage of GI physicians that exist... there aren't enough to do standard cancer screens, not to mention endoscopies on people presenting with sx that don't seem GI related. Take it upon yourselves to educate your families, neighbors, businesses, market owners and medical professionals, and watch your community change for the better, right before your eyes. None of my 5 siblings or 30 first cousins even want to be tested... they don't want the answer I got! I don't have ANY GI symptoms. Maybe someday there will be a treatment, but as is the case with many autoimmune problems, mostly they prevent symptoms. We are among the lucky ones because at least there is a cure to this: don't ingest the offending substances. Imagine if it were Multiple sclerosis or Rheumatoid Arhritis.... And FYI - most of us don't go into medicine to make money... we do it to help people and advance science.

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    I don't know you, but (BIG hugs to you Krista)!!! And Hear! Hear! about getting knowledge out about celiac disease!!! I was misdiagnosed with IBS 10 years ago - I didn't have diarrhea - I was constipated, severely!!! Soooo the GI specialist never tested me for celiac. She said eat more fiber and whole grains - yep, almost killed me!!! And this was a GI Specialist!!! Doctors need more education on celiac disease and encouragement for screening!!! Be well and thank you for sharing your experiences!

    To Carol: I too have an issue with constipation and have had for years.I have been lactose intolerant for years (maybe even lifelong) I am 44 years old and just diagnosed with celiac disease. I am anemic. I am trying to read every article I can to educate myself. So I can eat and not be miserable. I pray for all who suffer. Good luck and God bless you.

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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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