Why is Celiac Disease Still Being Overlooked by Doctors?
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Nov 4 2009

Why is Celiac Disease Still Being Overlooked by Doctors?

Celiac disease is the most common genetic condition in the world, so why don’t most U.S. doctors know much about it? There are many reasons but at present, the most important one is that there is no medication for the condition. If there was, the nightly news commercials would have the entire U.S. population believing that they might have celiac disease.

It is the best interest of pharmaceutical companies for people to not be tested for celiac disease, at least not until one of them has released a medication for the condition. If you’re wondering why big pharmacy companies care if people are tested and diagnosed with celiac, the answer is obvious – money. I’ve personally met people who were once on prescription drugs for the conditions listed below – all of their symptoms being directly related to their undiagnosed, untreated celiac disease - or gluten intolerance. In many cases, patients who adhere to the gluten-free diet are able to stop taking  medications for symptoms related to their previously untreated celiac condition. This translates to lower prescription medication sales and less money for companies in that industry. Every loss adds up and the industry does not want to lose 1/10th of 1% of their profits.

  • Migraines
  • IBS
  • Depression
  • Anxiety
  • Thyroid Disease (including Hashimoto’s)
  • Rheumatoid Arthritis
  • High Blood Pressure
  • High Cholesterol
  • Extreme Fatigue
  • Infertility
  • Anemia

Does everyone who has celiac have these symptoms and/or conditions? Absolutely not. Is your doctor going to suggest any of these things could be related to celiac disease? Unless your doctor is a celiac specialist, the answer is most likely no. Our medical system is set up and run by insurance and drug companies for the most part. It’s hard for doctors to practice good medicine these days and if you don’t understand that, you probably don’t personally know a doctor that practices here. It is a very sad – some would say embarrassing – state that we find ourselves in today in the U.S., regarding health care.

It is well documented that it takes many years for someone to get diagnosed with celiac in the U.S., while in many parts of Europe and in Canada, diagnosis’ come much faster. The NIH started a campaign in 2006 to educate U.S. doctors better about celiac. The agency might be trying their best, but so far they don’t seem to be doing a very impressive job meeting their goals. If we all sit around and wait for the government to get the word out about this condition, we’ll be waiting a very long time.

It’s up to us to help educate others (including uninformed or misinformed doctors) about celiac and gluten intolerance. It is only through knowledge that more people will be living gluten-free, assuming they will benefit from it health wise. They’ll be healthier and we’ll have more – and lower priced – options for gluten-free food. By working together, we’ve already made a difference but we still have a long way to go. Please consider speaking up about your condition, if you usually don’t. You never know who you might help by doing so.

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Article Written by:

Tiffany is considered a gluten-free advocate as well as the most discriminating gluten-free diner around. Her goal is to help others learn that there is life after a celiac diagnosis. Gluten-free dining and travel are two of her favorite things to do. Tiffany is a contributing writer and the Advertising Manager at "Delight gluten free" magazine. Check out her local blog, Gluten-Free Atlanta, for tips and tricks about living gluten-free in the ATL! Follow Tiffany on Twitter!

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  • http://www.mchenryceliacs.com Elizabeth Secora

    I agree with you 100%. And, I am one of those Celiacs who was on antidepressants and antianxiety meds, along with GERD medication. I no longer take any meds as everything cleared up once I was gluten-free.

    • http://www.glutensolutions.com Rob

      Yeah bye bye little purple pill!

      I do not see too many purple buses running around the country touting go gluten free it will clear up your heartburn!

      • http://www.glutenfreepromotions.com Tiffany Janes

        Rob – you are SO right….lol! I had a friend on over 26 medications for various things. She was dx’d with celiac and in less than a year she was off everything except the anxiety meds (due to her being made sick when eating out at the time). Eventually she got off everything – just by following the gluten-fee diet. There is no money to be made by the medical industry by telling people to go on a diet, but there is millions being made on drug sales for symptoms that celiac causes many people. It is indeed all about money.

      • http://www.glutensolutions.com/ Rob

        Gluten Free needs a bus! We can hand out free gluten free lemon bars that you made Tiffany which were awesome!
        We could get the gluten free bus sponsored by all the GF mnfg!

    • Jess

      I was sick for 12 years before I was finally diagnosed last year…was on about 6 different meds and seeing four different doctors almost once or twice a week for something. At one point they even told me it had to be all in my head…not something you really want to hear when you feel like somethings using your insides as a scratching post…but within a few months of going GF I was off all my meds except birth control, which I have to take to control cists. I’ve had some rough spots with the diet, especially the first few months as well the holidays, but whats more depressing to me was that it has taken the medical community so long to diagnose me…and that they felt the need to start blaming ME long before they even tried testing for allergies…something really has to be done about that… i lost three jobs and had to drop out of college due to being sick all the time, and almost lost my fiance on top of it, though he luckily stayed with me through thick and thin, pushing me to fight back with the doctors and get results when I was ready to throw in the towel. But it shouldn’t have ever had to come to that…. there has got to be a way to change things…take medicine back from the money greedy and get it back towards helping people… will probably never happen but it’s a nice dream to have…

  • Wellescent Health Blog

    An important factor related to celiac disease and diagnosis is that it is not straight forward to get a diagnosis so doctors other than specialists may have to fumble around before coming to the conclusion that a patient has the condition. Because of this, people must spend some time researching their symptoms and finding out what conditions are found in their family so that they can pass along to their doctor and relevant details that might speed diagnosis.

    • Jess

      My problem was that I am the only one in my family history to have this kind of reaction to Gluten, and the symptoms are all so similar to IBS that for a long time they just chalked my symptoms up to that and made me waste money on drugs that didn’t work…And it was even more depressing because i would tell them that it became worse after I ate, but they never put 2 and 2 together…they had me convinced that it was gallbladder, took that out, then it was something else, so on and so forth…there should be a movement in the medical community itself to make this condition more well known so they don’t waste time and can help us patients out with more probing and insightful questions of their own…if we do all the work, what’s the point of going to the dr??

  • http://www.glutenfreepromotions.com Tiffany Janes

    Elizabeth – glad to hear about you getting off your meds!

    “Doctors fumble around” – so true! But with 1 in 100 people having this condition, it should be one of the FIRST things they look for – not the last. A doctor told me after my bloodwork indicated celiac that I could not possibly have it since I was not of Scottish heritage. If I had listened to any of the doctors I encountered – I would not be diagnosed today. I had to fight every step of the way to get diagnosed and I have a rather strong personality. Many people don’t question doctors and go on suffering needessly for years. It’s simply shameful.

    • Terri

      Wow, I know that I’m alergic to gluten and I have a lot of the symptoms including unexplained anemia, never realized that it was that serious. How to you get gluten free?

  • http://www.thesavvyceliac.com Amy Leger

    I completely agree how outrageous this is! So sad that people aren’t getting diagnosed because Big Pharma isn’t behind it yet.
    I’ve blogged about this too…you’ve done a great job here — hitting the nail on the head.

  • http://www.living-with-celiac.com Yael

    Very interesting article. I had been sick for so long and had been to every specialist under the sun and not one of them checked me for Celiac until I ended up at a Haematologist who was looking for causes of my anemia. Its taken me 20 odd years for me to get a diagnosis and yes there is not nearly enough awareness about it. BTW Im in South Africa and its just as under diagnosed here ( 4 months gluten free and very well :)

  • http://www.glutenfreepromotions.com Tiffany Janes

    Glad you’re off the meds Elizabeth – great news!

    WHBlog – True – it’s not straight foward to diagnose at all. However, if docs in training are told they might see ONE case of celiac in their career, that’s probably all they’ll see. As Dr. Peter Green says – that becomes a self fulfilling prophecy. You can’t find your celiac patients if you’re not looking for them. So unfortunate…the NIH is doing a lousy job with their education program. Seems they targeted gastro docs and PCP dcos are still not being educated about this condition.

    Thanks Amy! I love your blog and I agree about big pharma. Just wait until they come up with some meds and then they’ll have every American thinking gluten is bad for them…lol!

    Yael – Glad you’re doing well! I know the U.S. is not the only country that is behind on this issue. Maybe we need a world wide celiac awareness campaign.

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  • Rosalind Baker

    At the same time I was diagnosed with an intolerance to gluten I had been suffering from dizzey spells over the past few months that began only in the mornings but after 3 months I was having dizzey spells all day.
    Miraculously the dizzey spells have disappeared since I began following a gluten free diet.
    Have you ever heard of anyone with celiac disease suffer from dizzey spells?

  • Mary

    After trying the diet for 6 months,I would rather be on medications. I felt so depressed and felt no better being on the diet.Celiac was discovered during an endoscopy for GERD, which I see is now caused by celiac. I beiginning to think all diseases are related to celiac by all the articles I have read. I’m an active 62 year old and very happy NOT being on that awful diet!!!

  • Lisa

    Excellent article, of course! I was sick for nearly 17 years without knowing what was making me sick. All the weird goings-on in my body were related: depression, peripheral neuropathy, easily bruised, decaying teeth, osteopenia, weak & brittle nails, easily getting sick (and for long periods of time), but worst of all, the diarrhea on a daily basis…all vanished on the gluten free diet. It didn’t vanish overnight, of course, because these ailments are many and didn’t occur just overnight either.

    Mary, you should reconsider going back on the diet, and following it THOROUGHLY. There are many subtelties about being on the diet that you have to learn, and keeping one’s head in the sand isn’t a good way to resist getting healthy. It is SO WORTH IT to follow the diet, despite the daily obstacles and comments from friends and family who just “don’t get it.”

    I was too trusting of my original doctor who told me I had IBS at the age of 23. Now, at 42, coming from New York City, I have learned to use my mouth to my advantage. I speak up when ordering out and ask lots and lots of questions. I find that people don’t know what I’m talking about, so I have to educate them. There are others who have heard of it, but still don’t know about cross contamination. I have to educate them. Then there are those who know what I have, what my dietary restrictions are and are aware of the pitfalls. Those folks are rare, but a true blessing.

    I used to schedule dinner meetings around the country for doctors to get educated on HIV disease, and they received continuing medical education credits. Gee, guess what? Those dinner meetings were sponsored by a pharmaceutical company that dispensed drugs for HIV patients! Unfortunately, the bottom line is the bottom dollar.

    We all have to “get a little New York” and open our mouths for the injustices about Celiacs who are misdiagnosed.

    I contacted the National Foundation for Celiac Awareness and received flyers to distribute to strangers. Whenever I am in a public bathroom and someone is a little sick in the stall next door, I quietly leave a pamphlet on the sink for them to take.

    I’m paying it forward, because I only wish someone had opened their big mouth and told me what I had all those years ago.

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  • http://www.penial-cysts-rare-neurological-mitochondrial-disorders.com/index.php Kathryn

    Although I was always ill since birth, and had a huge medical chart to show for it, because my symptoms were not consistent with the few doctors’s know about. Also, many with Celiac Disease have co-disorders which are somewhat commonly found with Celiac Disease, the doctor will find the other disorder first, like thyroid issues, depression, nutritional deficiency, anemia or so on. Because I was insistent that something else was wrong (I was told it was stress) and researched diseases based on my symptoms, I was able to narrow it down. The specialist said I didn’t have the common symptoms for CD but when the tests returned, he was a believer. Celiac Disease is a systemic disorder and will effect most area’s of the body. If a person does not receive adequate nutrition, many symptoms occur. When many doctors hear vague symptoms which can fit many disorders, they do basic tests. If those tests come back normal or a little off then they wait and see, often telling the woman she is stressed. Once in awhile, an astute doctor will dig a little deeper. I actually had a female doctor ask me why I wanted to be sick. Doctors were given inadequate information during training and sometimes the only additional information they get is brief snippets here and there. We are the education, so we need to be well-read and understand the disorder.

    • http://www.gf-glutenfree.com Kim Hiscox

      Yes, we have to get the word out there and get more doctors understand the disease. I think it is because they do not understand the disease or get much tuition on it during their training. Many doctors just treat the symptoms with medications rather than looking further into the reason why. In Italy, all children at the age of 12 are tested for celiac disease. We think of Italy loving their pasta etc and woult be gluten heaven, but because they are aware of the disease the country is very gluten free aware and all little local stores stock gluten free foods.

  • Royce Evans

    I have had problems with my stomach since I was 13. Very severe pain and gas. I was diagnosed with gastritus. O ver the years I have avoided certain things here and there.. I now realize(after living of fof cereal and sandwiches in nursing school) that I may have celiac disease. I had my gall bladder removed at 33 (I am 43) uterine ablation(b/c of anemia).. now brown spots are showing up on my body.. My immune system is out of wack, all due to celiac.. I have not been diagnosed but all the symptoms are there.

    • http://www.glutenfreepromotions.com Tiffany Janes

      Royce – if you do have the condition, the only way to get better is by following a strict gluten-free diet. That’s hard for some people to do without a formal celiac dx. It’s a good idea to be tested, but keep in mind many people get false negatives on both the blood test and the biopsy.

  • Vivian Stephens

    I didn’t realize that there can be false negatives for bloodwork and biopsies. My daughter and I test negative for celiac but are gluten sensitive. How can I know for sure whether we have celiac? What percentage of tests are false negatives?

    • http://www.glutenfreepromotions.com Tiffany Janes

      As far as I know, there are no published statistics regarding the percentage of false negatives for either test. Leading celiac experts agree that each test does produce some false negatives for various reasons. Not all lab techs know how to properly read and interpret the blood work results and many doctors take only two samples during the biopsy when 4-6 are needed for a proper test. Some of the leading experts are now suggesting that when people have symptoms of celiac and get negative tests, they try the diet to see if symptoms alleviate or go away. If the patient improved on the diet, they would be deemed ‘gluten sensitive’ and be told to stay on the gluten-free diet.

  • Eva

    I used to think that in the U.S. the celiac disease was something very common, in every way.
    I’m from Argentina and I’m 20, I was diagnosed with celiac disease when I was 11, and at that moment, this disease was completely unknown. Even I had to change several times from hospitals, because this disease was so unknown, that no doctor could tell me what was exactly what I had. You can imagine after that, how hard was find gluten-free foods.
    Now, is starting to be more recognized, even, people from asociations, could implement a celiac disease law, to be better known in hospitals, and gluten-free foods could be more accesible and affordable.
    However, when I told someone that I’m celiac, many people still saying: what?, and the gluten-free foods is still very hard to find. You’re so lucky actually, I can see that in the U.S. the grocery stores have sections with gluten-free foods, and gluten-free diets are something very common. But that doesn’t happen here, so, you have to consider lucky in some way. Is not so harder to all of you like it is for me…

  • Taylor

    because they’re too stupid to figure it out. you have to really be your own detective. are you feeling like **** all the time? go gluten free for 1 month, and see if you feel better. if you do, then you’re gluten intolerant.

    doctors are detectives, folks. and they only have so many tools, and when those tools fail, you will often see a false negative. meaning, you have gluten intolerance, but the test says that you do not.

  • ktb

    The problem in our house is that we find it still SO hard to eat truly GF! Our entire family was diagnosed and went GF in 2005—and thankfully food labeling has changed. But to this day, ingredients derived from gluten that are considered GF do make us sick. Very sick. Cross contamination is a huge problem. Our food list is SO limited—-to the point my husband and I don’t even eat grains at all. I go to sites like this with all sorts of advertisements for new GF packaged foods and brands and I get so depressed because I know our family would get sick—-and of course has gotten sick from many of the mainstream GF brands. Basically, anything from a jar, bottle or package seems to get us sick. We dry our own fresh herbs, only eat fresh meats, veggies, fruits, unshelled nuts, eggs and cheese. We have found that eating some brands of cheap mass produced eggs and chickens have even gotten us very gluten ill because of their feed. Being Celiac and eating the GF diet can be complicated for some—-I know many Celiac’s in my town that can eat all sorts of stuff we can’t.

  • how to go on facebook at school

    I never thought it was that serious!!!! That’s unbelievable!!!!

  • Patrick

    It comes down to one thing: Money. There is no money in diagnosing Celiac in America. Big Pharma/Doctors would rather treat you for IBS with a pill that you need to take every day, rather than a simple diet change. My own diagnosis 32 years ago, was pure chance, because I happened to be getting tested at U.C. San Francisco, where they pioneered the modern biopsy procedure. To this day, I get GPs who question my diagnosis, and want to suggest alternative treatment, when I am perfectly healthy on a GF diet.

  • Cathi

    This is kind of of the subject., but I wonder how many people with Celiac or just Gluten Sensitivity also have Sensitivities to Casein, the protein in milk, along with soy protiens and corn proteins? I have problems with all of these. I’ve also been wondering about Rice, it that bothering me too. I am very strict with my diet. Anyway, just wondering. . .

    • http://www.glutenfreepromotions.com Tiffany Janes

      Cathi – I’ve interviewed several celiac specialists and dietitians and no one has been able to definitively answer the questions you pose. The reason for this is that there have not been studies on such issues – or none large enough to publish studies on. We don’t even know how many people have non-celiac gluten sensitivity and there is still no test for that condition.

      Patrick’s comment above pretty much hit the nail on the head re: why U.S. most docs don’t know much about celiac. If there is not a treatment for a condition that involved big pharma, then docs don’t get trained about it. Therefore, they don’t look for celiac in their patients. There is no way to find something you are not even looking for.