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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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    Guest Lisa E San Jose CA

    Posted

    At age 38, I started to sweat after I ate any type of food. Then I got acid reflux. Took Prilosec for 2 years, then I thought I caught the flu - but the symptoms wouldn't go away. My doctor said take Pepto Bismol. I went back and forth complaining of chronic diarrhea. She said take ImmodiumAD. It was six years of this daily struggle until I learned of Celiac disease on the web, and insisted on being tested. I had already gone on a gluten free diet on my own, as it was the only one that made me feel any better. My blood test was positive, and the biopsy as well. Eating gluten free and continually getting cross contaminated accidentally from mis-labeled food sources, I still only have about 6-10 symptom free days a year. I still take all those medicines daily. A new doctor recently said my blood test for Celiac was negative, but I kept a daily log of my symptoms, tried his cholesterol medicine and am back on Prilosec - in addition to Pepto, Gas-X, ImmodiumAD daily. He told me to stop taking Tylenol, and I suffer from abdominal pain daily. I get an ultrasound of my abdomen next week. I have finally convinced him to refer me to a GI specialist. The gluten free diet and over the counter medicines are not working well enough. I still get cross contaminated 90% of the time whenever I eat at any restaurant, and sometimes even when I cook for myself at home. Only steamed rice and veggies seem to help a bit.

    I'm now 45, and the symptoms are starting to interfere with my daily life/work. My own research continues, and I am hopeful a GI specialist will be of some help. We need better food labeling and more focus on the food supply chain in the US. The FDA & USDA need to have more money, power, and responsibility for the chemicals and additives that are being added into our foods. I'm allergic to more foods and drugs than I can name. My life is being spent feeling ill. Years are passing me by and I feel unable to take part in the activities that I used to enjoy. It should be against the law to put antibiotics, pesticides, additives, and chemicals into human foods. The politicians are no the take, and the lobbyists and their cash contributions are enabling us to feed unknown and unhealthy substances to ourselves and our families.

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    It took about 15 years (give or take) for me to be diagnosed. Here's my story:

    At age 16, I was healthy, if a little skinny. I made all A's in school, had 2 jobs, did marching band, school plays, chorus, volunteered at the animal shelter, and babysat my infant sister. I had tons of energy. By age 17, my grades had started to slip, my brain felt fuzzy all the time, I'd developed stomach ulcers, and a serious attitude. My little sister had failure to thrive, along with a host of other problems. She was later diagnosed as autistic (savantism was her niche), and she was taken off gluten and casein at age 9. My home life was less than ideal, so I figured it was all nerves, and part of growing up. My symptoms seemed to set in about the time I got my first period (also age 16). I went to college out of state at 17, and the stress and unfamiliar foods seemed to aggravate my ulcers. I remained sickly for many years, and discovered I was severely anemic when I attempted to donate blood. I bruised easily, to the point that my boyfriend (now husband) was called in to the campus police station and they examined his knuckles to determine if he'd been abusing me. I continued to have "female troubles" which led to a period that lasted 40 days. I had exploratory surgery, still no answers. Fast forward a few years, I married, got pregnant with my first child. It was a nightmare. I was sick the entire pregnancy, and did not gain the proper weight. My son was born by induction a month early. Shortly after that, I developed painful red lumps in my legs. Several doctors and wrong diagnoses later, I was told all of my issues were psychosomatic, and I just needed to relax. My weight ballooned to 180 (I'm 5'9"), and I was ravenously hungry all the time. In '04 my gallbladder was removed, with no alleviation of my symptoms. I got hold of my op report, which said that they had removed a perfectly healthy gallbladder. In '06, I got pregnant again, developed gestational diabetes and placenta previa, and was put on bed rest. He was born healthy, if a little early. My stomach symptoms continued to worsen, and my weight again topped 180. My life was miserable, and I had to leave my job. I could barely get out of bed. Doctors told me I was a hypochondriac, I had dumping syndrome, rheumatoid arthritis, lupus, MS, and acid reflux. I visited a nurse practitioner before a trip out of the country, and described my symptoms. She did a full blood panel, and diagnosed me with celiac. I was heartbroken, but not really surprised, as my sister had been gluten-free for 10 years. She also said my case was interesting, as I'd gained so much weight, but had severe malnutrition. She said if I'd seen her at the hospital, she'd have admitted me. I've been gluten-free since last April, my weight dropped back down to 125. I have my energy back, and can again eat in public. I'm not sure how much damage had already been done, but even the slightest cross-contamination makes me sick for days, and bloats me at least 2 sizes. I no longer feel like I'm starving to death, but gluten-free food is hard to come by (and expensive!) in this neck of the woods, so it's still a struggle. My regular doctor refuses to believe the NP's diagnosis, and I get the sarcastic "so you all of a sudden are allergic to wheat" when I go out to eat with my friends who knew me B.C. (before celiac). I still think there is a hormonal link, as I have bad flare-ups at "that time of the month" but for the most part, I am back to my relatively normal self. I'm just sorry it took 15 years and 3 unnecessary surgeries to get here. I wish more MD's were better informed about this, or more willing to accept another's diagnosis, but y'all are doing a lot to help. Keep up the great work, and sorry about the wall of text.

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    It makes me want to cry when I hear story after story where people have gone through this. After 15 years of suffering I was both elated to have a diagnosis and angered that all it took was a blood test!

     

    When I was 16 or 17 I began having stomach pain, diarrhea, fatigue, depression, you know the story. I went to doctor after doctor. I got put on anti-depressants, Bentyl, Valium, soma, trazodone, ultram, prilosec, carafate. I was given vicodin, oxytocin, and hydrocodine for the pain. I have made over 50 trips to the ER in such horrible pain that I had to be sedated. All I was ever told was it was stress. Or depression. Or a nervous stomach. Or IBS. Or lactose intolerance. Or an ulcer. Or I was an attention junkie. I can only imagine how I looked to the doctors, thin, pale, sweating and screaming with the pain, huge dark circles under my eyes. Doctor after doctor just looked at me like I was nuts, or some kind of pill-head begging for more meds. When really I was begging for a diagnosis! Blood tests were run, stool samples were taken, even 1 upper endoscope and 2 colonoscopys. NOTHING, year after year. I really thought I was crazy. I had 3 miscarriages and finally 2 live births, both preemies. Both pregnancies I would be too weak to walk through the store, too weak to drive, I would simply pass out. My heart was checked, my brain was scanned, I was sent to a psychologist who gave me more effin pills! Finally my gallbladder was removed and when the pain continued they were going to do exploratory surgery! I was desperate to not be cut on again and threw out to the surgeon "Could it be gluten intolerance?"

     

    HE LAUGHED AT ME! Yes. He chuckled and said "Well, people with Sprue only weigh 90 lbs and are wasting away to nothing, you're a healthy 120 (btw, I did not look very healthy!) but sure what the heck let's check!" And the rest is history. Within 3 days of going gluten free it was like I woke up from a dream and the sky was blue and I could suddenly breathe again without pain. For the first time in 15 years I could take a breath without pain. I wish to god that routine screening for Celiac disease existed. I am so glad to wake up every morning and not have to take a single medication. I just wish it hadn't taken so long! I am now healthy (and I look healthy!) and it feels so good.

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    I'm now 45 and as fit as a butcher's dog. I am on gluten free diet--started it three years ago. I was permanently ill from the age of 17 until 'diagnosis'. My blood test was negative and my biopsies were negative! Despite this I started a gluten-free diet. The change in my health on gluten-free diet has been unbelievable! I previously suffered from several migraines a week, IBS, lethargy, tiredness, hair falling out, black circle under my eyes, bruises everywhere, asthma (I've now thrown my medication away!), puffy face, ataxia, hypoglycaemia, aching joints and bones, more recently sudden massive weight gain (1 1/2 stone in a year). At one point I was so ill I gave up work for six months. I even fell asleep driving the car a couple of times! I was ready to commit suicide I was so ill. Now I'm symptom free, a stone lighter, happy and healthy. How I wish I has know when I was a teenager. I might have had a life. I have no idea how many doctors I saw. Almost all of them made me feel like a hypochondriac and my family were not much better.

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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 science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. 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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