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.
Great suggestions - and they all look easy! What kid wouldn't like any of these? 
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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.
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.
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.
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.
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
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.
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?
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!!!
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.