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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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    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?

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    My first symptoms appeared in early childhood. I was suddenly clumsy (ataxia) and developed Dh that was misdiagnosed as many different things over the years from poison ivy to atopic dermatitis, the skin equivalent of IBS. Since home life was not good all stomach issues were 'nerves'. In the last 15 years before diagnosis I became extremely ill and was thought to have everything from MS to 'you want to be sick' to 'it's all stress. My neuro considered my brain lesions to be insignificant and my GI never listened when I told him I woke every night for 2 to 3 hours of excruciating pain when my system cleared itself. I was finally diagnosed at age 46, 6 months after my dear daughter told me the family would understand if I killed myself. She was only 14 and my children grew up literally watching their mother die day by day. Am I still angry and mistrustful of doctors? You bet. It was 40 years from first symptom to diagnosis for me. If I had all the money we paid for testing and drugs over those years I could now buy my own island instead of struggling to survive because my college education was cut short leaving me in my 50's only minimally able to support myself. We desperately need to get knowledge of this disease and full screening in the US. It would save millions of health care dollars and many, many lives.

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    In my opinion it is conspiracy. Doctors are following standard procedure without using brain (most of them have a little of it). Gluten is driving engine of US economy. Public would learn of toxicity of gluten, would create panic. That is why doctor do not in diagnostic instruction testing for gluten intolerance. Governments were able to make cigarette smoking deadly, despite it is not as bad as gluten, which depress immune system. Than all bacterias, viruses and other germs have free ride. I am 75 years old; smoking package cigarettes a day. Despite of all in addition eating read and fat meat, I am in perfect health with normal weigh; blood pressure in range 75/120. I do white water kayaking, bicycling and other outdoor activities. However, I am gluten free last 15 years.

    For everything is one reason only. In this case it is governments conspiracy. If they can do with smoking, they could do same wit gluten.

    Best wishes to you all!

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    Looking back I've had symptoms most of my life but was simply told by mom that I had the family stomach and it was "normal" for us. It didn't occur to me to say anything to a doctor until I was 40. At that point I was very ill and had tried everything I could come up. Gave up coffee, after all it is hard on the stomach, nope, how about dairy, didn't help, must be stress, but hmm life is good other than being miserably sick so that can't be it. Time to go to the doctor. She said what most do with one MAJOR exception. It is probably IBS but lets do a blood test to make sure it isn't celiac. I'm sure it isn't but it is more common than we used to think... One week later I had a biopsy and confirmed what the blood test said. Since then (3 whole months) I've been eating gluten free and feeling much better, except when I get cross contaminated that is.

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    Doctors don't make any money from us purchasing gluten free food. They also only received 20-30 minutes of education on celiac in the seven years of medical school! No wonder they can't figure out what is wrong. We have to do this research ourselves. With the internet at our hands, get to work! I,too, went misdiagnosed for over 15 years. I was convinced along with my family I was a hypochondriac. I am not and now they all know, there really was something wrong. Pay attention to what your body is telling you.

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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.

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    I think the slow and under diagnostic numbers are due primarily because physicians are given so little, if any, information about celiac sprue in school. They also don't pay much attention to dietary needs other than vitamin/mineral deficiencies. I was symptomatic from birth and not diagnosed until I was 50, at my suggestion to my doctor. I suffered all of the typical diagnoses people get when their physicians can't figure out what's wrong.

    While this may not have a huge impact on getting people diagnosed sooner, I was adopted from a state that continues to keep adoption records sealed. Considering the hereditary aspects of celiac, the monetary burden a slow diagnosis puts on health care and the patient, and the suffering of patients and families, perhaps we need to consider mandated testing. It's true that a disease that's treated almost exclusively via nutrition might influence some physicians' actions, I believe that most doctors go into medicine to help people and consciously avoiding a diagnosis that is treated by diet alone is not the primary reason behind slow diagnosis.

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    I suffered 26 years. Before that, doctors in Brazil even sent me to psychologist/psychiatrist, thinking that I was a hypochondriac and that no one experiences so many symptoms at once. A dermatologist found out... go figure!

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    This is an excellent article. I have 17 people in my family with either celiac disease or dermatitis herpetiformis. My sister has been dignosed since 1962 after many years of illnesses. We have several in that group with gluten sensitivity which is harder to get diagnosed than celiac disease. We are all doing very well on the gluten free diet and instead of complaining I am telling my family to be thankful for all the new foods and information.Be proactive with your Dr.Take info with you from Dr Joseph Murray of the Mayo Clinic.He put my family in a study.It is a healthy diet and I am healthy on it.Also,this is a wonderful website. Cudos to Celiac.Com.

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    My first symptoms appeared in early childhood. I was suddenly clumsy (ataxia) and developed Dh that was misdiagnosed as many different things over the years from poison ivy to atopic dermatitis, the skin equivalent of IBS. Since home life was not good all stomach issues were 'nerves'. In the last 15 years before diagnosis I became extremely ill and was thought to have everything from MS to 'you want to be sick' to 'it's all stress. My neuro considered my brain lesions to be insignificant and my GI never listened when I told him I woke every night for 2 to 3 hours of excruciating pain when my system cleared itself. I was finally diagnosed at age 46, 6 months after my dear daughter told me the family would understand if I killed myself. She was only 14 and my children grew up literally watching their mother die day by day. Am I still angry and mistrustful of doctors? You bet. It was 40 years from first symptom to diagnosis for me. If I had all the money we paid for testing and drugs over those years I could now buy my own island instead of struggling to survive because my college education was cut short leaving me in my 50's only minimally able to support myself. We desperately need to get knowledge of this disease and full screening in the US. It would save millions of health care dollars and many, many lives.

    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.

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    All my life I suffered from stomach problems. When I was just a baby, my Mother was told that I was allergic to wheat. Supposedly, I outgrew this "allergy". I was told I had IBS, nerves and things I can't remember. At one point I was treated like a hypochondriac housewife. I just knew there was something wrong and I wanted to fix it and feel good. Through the years, the bouts were on and off until the summer/fall of 1991. That's when I became so incredibly sick and was unable to eat the least little bit of food without suffering constant diarrhea. I was experiencing excessive weight loss, very low blood pressure and severe leg cramps. I was so anemic they thought I was bleeding internally. At one point I lived on nothing but jello. I had never heard of this disease and didn't associate the fact that every time I ate a piece of toast it would start all over again. My children were afraid to even hug me due to my extreme frailty. Finally, my family doctor started consulted with an associate - a gastroenterologist - about my case. The gastro doctor said that it sounded like what he called "tropical sprue" but said that it was very rare disease. Long story short, I collapsed at work and ended up in the hospital and they decided to do two tests - a bone marrow biopsy and an endoscopy. Fortunately for me, when the gastro doctor saw me (he said I looked like a concentration camp victim) he decided to do the endoscopy first. FINALLY - a diagnosis - you have Celiac Sprue. That was January, 1992 and it hasn't been an easy ride but at least I feel good. Since then, a sister, a cousin and her two sons were diagnosed with celiac. Now one of my nieces is being checked for this disease as the reason for all of her problems (after I wrote a letter to the hospital - a teaching hospital by the way which I won't name). Doctors know nothing about this disease and I think it should be the first thing ruled out especially in a family with so much history. With all the information out there now no one should have to suffer for years. I was 42 when I was diagnosed in 1992.

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    I had a decade of misery. My doctor's niece started a gluten-free restaurant so he suggested I try the diet to see if it would help. Happy coincidence for me. And my daughter, who was developing similar symptoms.

    The problem is a general lack of knowledge, which is changing. Gluten-free food manufacturer are becoming more common and profitable. They'll be the ones driving awareness.

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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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