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

I think the reason many people aren't diagnosed is because doctors have celiac disease linked in their mind with "failure to thrive," which means a fat lady like me couldn't possibly have celiac disease...right? I was self-diagnosed when my sister called to tell me she had it -- I stopped eating gluten and my "irritable bowel syndrome" went away, my "fuzzy brain syndrome" went away (except when I accidentally get cross contamination), my feeling that every cell in my body was sick went away. The other day I found a paper I typed up and gave to a gastroenterologist ten years ago (after about 20 years of IBS). He did a colonoscopy, told me I had a few small diverticuli, and sent me home with instructions to eat more fiber. The more fiber I ate, the sicker I got, so that only lasted a couple of weeks. Looking at the paper I gave the doctor, it is a classic list of symptoms of celiac disease, but I had to suffer for 10 more years before my sister was diagnosed, and she passed the word to me.

I had suffered celiac symptoms since birth and was not diagnosed until I was 52. I was diagnosed with depression,had ulcers at age 14, sluggish gallbladder, panic attacks, had a thyroid lobectomy, acid reflux, and diagnosed with irritable bowel. I also had anemia most of the time. It was always a problem when I went to donate blood. All this over a period of many, many years. I was hospitalized with diarrhea, tested for parasites and finally told not to drink apple juice as that would cause the problem.

What?????????? I was down to 110 lbs before a GI finally got it right! Feel good now and do most of my own cooking and baking. The food has gotten way better over the years.

I started pursuing a diagnosis at the age of 19 with a gastroenterologist. I did not learn of gluten intolerance until many doctors later at the age of 55. Researching online, particularly the personal stories on the NFCA website, I decided celiac was it. enterolab testing was positive, and a restaurant's mistake 2 months after going gluten-free was the overwhelmingly convincing confirmation. That's 36 years. Part of the problem is that a complete history of every seemingly disconnected symptom needs to be taken. Doctors need to learn the symptoms. For most celiacs, it is a subtle and insidious disease process. The huge shortage of primary physicians and the resultant brevity of examinations, with most doctors not taking complete histories, are a contributing cause of the long time to diagnosis. But, mostly it was just ignorance of doctors. The best solution is to legislatively require testing for everyone like they did in Italy. Doctor Peter H.R. Greene has said that celiac affects 1% of the male population, as well as 1% of the female population.

It took me well over twenty years and I had to figure it out myself with friends suggesting it to me. If it was no for the web I would be even worse. I still get the Auto immune that goes with it.

I had to take all kinds of medications that almost gave me kidney failure for the high blood pressure it caused. I went off of them and I figured out what I ate had something to do with it and it took several years to get completely what.

Now my doc likes seeing me come for she learns from me she says. I still get the tiredness and it is hard to find anything to eat as I can't eat the chemical foods as well.

I would have done myself in if it was not for how bad I felt and on top of that no one believed me much. Now it is a bit easier and I think it ruined my thyroid.

I think my mom had it. I am not sure but she died early very sick.

I was 38 before I was even allergy tested. Because my family didn't think my symptoms were worth bringing up at doctor visits, I suffered through a childhood full of food allergies, and am fortunate to be here, in reasonable health, at the age of 43. I had gastrointestinal symptoms, hives, all sorts of things; by the time I was tested my caeliac disease was quite advanced and sometimes I felt weak and tired, and like I was going to die. It wasn't until I mentioned a hive flare to my doctor that I was allergy tested, and found to be allergic to at least 41 different foods and other allergens. Because nobody linked other symptoms, such as weak tooth enamel, a seemingly random asthma attack, thinning hair, etc, to possible allergies, I never thought to mention everything at once, in all those years, so tests could be run. So until 5 years ago I pretty much suffered in silence, accepted my problems as simply a part of me. Changing my diet/lifestyle is not always easy, but it has made a huge difference in how I feel. I am still discovering health issues which can be linked to allergies, and it gives me peace of mind to know that changing how I eat has improved my health. Everyone, it is never too late to get the diagnosis that will change the rest of your life.

At the age of 40 I started getting dermatitis herpetiformis. Without the knowledge of gluten intolerance I thought it was stress or contact dermatitis. I went to 4 dermatologist and 2 allergists over a period of 7 years to hear its mite bites to flea bites etc. I disputed this diagnosis with them . Finally after doing some research I eliminated gluten from my diet . It is now been 17 years and cross contamination is still a real problem for me. Only 1 doctor thought I might have DH. Why is that? Too long to wait for a diagnosis.

I was fortunate to have been diagnosed on my first visit after having my lab work come back positive. I was not even aware that my doctor was going to do a celiac lab panel but I'm very thankful she did. I was then sent for a small bowel biopsy and immediately started a gluten free diet.

I have suffered from this disease since childhood (I am 48) and was diagnosed 18 months ago. The worse part early on was bad rashes on knees, elbows and at the base of my spine. This continued on and off throughout the years. As I got older other symptoms began such as stomach aches, bloating, terrible migraines etc. etc. we all know what they are right? I was listening to a medical radio programme one day while driving and whilst talking about gastrointestinal diseases the person started talking about celiac disease, which by the way meant nothing to me because I'd never heard of it, but when she mentioned dh and the usual location for it I knew that I had finally figured it out. I saw my doctor the next day and demanded a biopsy. I literally had to argue with him to do the endoscopy because he wanted to convince me it was acid reflux and he could perform surgery to correct it (he is a surgeon). I made a deal with him that if it wasn't celiac, we could talk about the surgery. A week later I got the diagnoses and was elated. My doctor apologised to me but still is against testing other members of my family that have gastrointestinal problems - he says celiac disease is 'very rare'. I traveled to Europe last year and they are so much more aware than in North America - some eastern European countries routinely test babies at 1 year old.

I don't think US doctors are in some conspiracy, they just don't know about it and don't want to know.

It took me over 25 years to get diagnosed. I was told I was anorexic, anemic, and just plain stressed out. They said stress was the cause of my symptoms, when I knew it wasn't. I am very happily married and have 4 wonderful children. I also developed 3 different autoimmune diseases (fibromyalgia, low-thyroid, and Reynaud's symdrome) over the 25-year period because I didn't know I had celiac and ate gluten regularly; no fun!

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.

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!

I was diagnosed at age 64 after 15 miserable years of being dismissed by the doctors, including my endocrinologist. The symptoms were initially masked by the symptoms of hypothyroidism which flared at the same time menopause hit. My hypothyroidism was under-medicated for the first 5 years following diagnosis. One nurse had patronizingly patted my hand and told me that I just had to get used to the aging process. It was al I could do not to smack her. I finally got their attention by taking in before and after pictures and bags full of hair that I'd lost over a 2 month period. Only at that point had they decided that I was not just a whinny menopausal woman.

But in spite of getting the thyroid medications adjusted, I still wasn't quite right. When the diarrhea hit a few years later it was at first treated as the flu, then a viral infection. I was finally referred to a gastroenerologist 3 years ago, and 6 months later he told me I had celiac Disease.

I believe we are the victims of our doctors' ignorance and their arrogant need to be right. What do we need to do to make sure that they get the education they need about celiac disease? JAMA or NEJM articles? CME classes? Contacting the educational directors at hospitals and HMO's?

For me, I'm grateful for celiac.com and the folks we make it valuable to me. Thanks to all of you who keep us informed of the latest research.

In order for doctors to diagnose celiac disease, medical schools need to include courses (beyond pediatrics) about it–and how it can manifest in each of the disciplines.