Many Doctors Are Not Supportive Regarding Celiac

[Jennas-auntie]

Maybe one of the reasons that doctors do not test for celiac is because up until very recently it has been seen as a very rare disease. I believe the figures used to be 1 in 10,000, instead of the more truer figure of 1 in 133.

Seven years ago when I referred to a leading GI specialist for vomiting, diarrhea and dramatic weight loss (I lost 25lbs in less than a month), I was told I was just stressed and to "get over it" as she handed me a prescription for anti-nausea drugs. Yes, I was stressed because I was throwing up twice a day, couldn't keep any food down and was trying to work my way through my science degree at the time. It took a year before I stopped throwing up every day and now seven years later I still have diarrhea and nausea. *sigh*

Perhaps as doctors become more and more aware of this disease, others won't have to suffer for years before being diagnosed.

I hope this is true. I think there are three categories of doctors-the ones who listen to their patients, the ones who are cynical but will listen to other doctors/publications, and the ones who can't be convinced of anything if it didn't occur to them first. There really are doctors out there who will listen to their patients, and hopefully with the NIH push the second category will "get it" leaving only the ones who are hopefully in the minority. I agree that a big problem is the doctor's idea of "No one will follow the diet anyway". I know of at least one person who finally went in for testing, and the doctor said, "You'd have to never again eat bread, cake, cookies, doughnuts, or pizza" and then didn't test her for it. This is an attitude I will never understand. Doctors don't say, "We won't test you for cancer because you probably wouldn't do chemotherapy" or "We won't test you for diabetes because the lifestyle change is too much for you". That is taking the responsibility of treatment choice out of the hands of the patient by refusing to test them at all.

I also think it is a good thing for people to take responsibility for their own health, and this really can change doctor's opinions. I know of a woman who was tested, they said she was negative, and then after another year of huge issues she got tested by enterolab-which said she was positive. When she asked back at her doc's why her other test was negative, he (who had been hostile to the idea anyway) looked it up and said, "Well actually it was borderline positive but I didn't think it was significant" which shows the need for doctor education. Her doc also didn't believe the outside results, but now he agrees because he can't argue the fact that she has been able to drop most of her medications and over halve her thyroid medication just by going gluten free. So patients really can change doctor's minds.

I just read recently that rather than 11 years until diagnosis, it now takes (sigh) 9. But at least the numbers are going in the right direction. Let's keep it up and get it down to weeks!

Just went to look up that source and found an even more recent one from the Celiac Disease Center at Columbia University.

"The average length of time between onset of symptoms and the diagnosis of celiac disease has decreased from 9 years for patients diagnosed prior to 1990 to 4.4 years for patients who were diagnosed after 1993 [2]. Although this change likely reflects the advent of serologic tests and growing awareness of celiac disease, the persistent lag between symptoms and diagnosis leaves much room for improvement. Several studies have demonstrated that the diagnostic delay was physician related rather than delay in patients seeking health care [8-10]."

[daffadilly]

I also think it is a good thing for people to take responsibility for their own health, and this really can change doctor's opinions. I know of a woman who was tested, they said she was negative, and then after another year of huge issues she got tested by enterolab-which said she was positive. When she asked back at her doc's why her other test was negative, he (who had been hostile to the idea anyway) looked it up and said, "Well actually it was borderline positive but I didn't think it was significant" which shows the need for doctor education. Her doc also didn't believe the outside results, but now he agrees because he can't argue the fact that she has been able to drop most of her medications and over halve her thyroid medication just by going gluten free. So patients really can change doctor's minds.

This is why you are ALWAYS supposed to get a hard copy of all tests for your OWN files.

Tiffany the world needs people like you !!!!

I used to be married to a doctor and knew lots of doctors socially - of course these would now be older doctors - if they are still living, the whole lot would not deserve your good thoughts of their profession.

It is worse than you can imagine...

[debmidge]

This is why you are ALWAYS supposed to get a hard copy of all tests for your OWN files.

Tiffany the world needs people like you !!!!

I used to be married to a doctor and knew lots of doctors socially - of course these would now be older doctors - if they are still living, the whole lot would not deserve your good thoughts of their profession.

It is worse than you can imagine...

I agree that most of the difficult doctors are the "old school" group and when you read my posts understand that the time frame would be when these "old school" doctors were practicing. Most of the younger Drs. are "getting it" and doing something about it. Not all Drs are money grubbers; but you scratch your head and wonder about the ones who refuse to "get it" and you can only come to the conclusion that there's either arrogance or money to be lost somewhere.

One of my husband's first gastros had no money to lose but refused to test him in 1977 calling him a "junkie." This was a military doctor at a Veterans Hospital. I think that we've been through the most extreme experiences that a misdiagnosed celiac can have so when I talk about the past doctors I have nothing but negative to say. I hope you all can understand that. For more information please read our blub on bottom.

And yes, I fired the doctor who would not let me have the radioactive uptake test...the new doctor I went to ordered it right away and couldn't believe what I was telling her about him...as it turned out I had to have the right side of my thyroid removed and it was not cancer (thankfully).

The fired Dr. was also upset because my OB/GYN originally found the lump and OB/GYN quickly wrote me a slip to get the thyroid blood test - the fired GP was visibly annoyed that the OB/GYN did that: I was in shock and could not understand what the GP was getting so uptight about. It was only a blood test....This created friction between us from the getgo.

[Canadian Karen]

Very good discussion....

I truly believe though that most doctors are just simply under-educated about this disease, and that is the reason for the lack of understanding about this disease.

I find this incredibly ironic. Someone mentioned that doctors are reluctant to "go there" because the diet is so difficult and the compliance rate is incredibly low. But it is within the doctor's control to change this. The more common this disease is diagnosed, the more that will increase the numbers of the general population demanding good, tasty, accessible and AFFORDABLE gluten-free items. If gluten free food was more accessible, tastier, cheaper and more mainstream, then it would be that much easier for people to stay true to the diet.

[madison]

One of the reasons, and a big reason, why doctors do not look at anything for celiac/gluten intolerance is, there is no money in it for them. If a doctor diagnosises you with Celiac Disease, the only treatment is a gluten free life, no drugs or scripts can be taken for it. They can't fill you up with Nexium, Prilosec, Lexapro, anti-depressants of many sorts, stomach pills, diarrhea pills, allergy pills and on and on and on.

My husband is taking many scripts because of his diabetes, but since he has gone gluten free with me he no longer takes any allergy pills, and no stomach meds, and it has decreased our pill bill by at least $200.00 every three months.

I went on the diet all on my own, the doctors in my life were clueless and basically still are. I do have a doc that has treated come celiac patients here, but I don't feel I need his blessing to feel better.

I'm gonna get on my soap box here a little bit, so bear with me! We don't need doctors to tell us what is wrong with us in certain situations. I've spent close to $50,000 on tests the past ten to fifteen years (scopes/blood tests/colonoscopys/egd) with no results. I feel better on a gluten free and dairy free life. I will never eat gluten for 3-6 months to get a test done. I know what my body needs and doesn't need. So those of you that are questioning all the testing, or if you got negative test results, if you feel better on a gluten free diet than that right there could be your diagnosis. At least give it a try for 3-6 months. If you feel better than continue.

And yes, a gluten free life can be complicated, but it is only as complicated as you want to make it. Yes, it is not convenient cause you can't eat out at 90% of the restaurants, but in the end if you feel better because you've given it up, that should give you more reason to continue with the diet.

It's taken me many years to get where I am at right now, and yes, I do get accidental glutenings every now and then, and I pay the price for it. But I will never, ever eat wheat, rye, barley or oats intentionally again.

So much of everything on this post rings true to me. I've seen some pretty un-helpful doctors, but I know some helpful ones too. When I told my GI that I had given up wheat and was feeling much better, he looked at me and said "oh Celiac disease? I doubt it." He continued to test me for everything else except Celiac. Finally after I was gluten-free for over a month, he did a Celiac blood panel - negative of course. I never went back to this doctor. Eating a gluten-free diet has changed my life. I feel so much better, have so much more energy, and so many of my mystery health problems are gone.

On the other hand, my sister and brother-in-law are both doctors. They know what I've been through, how good I now feel, and they know how strict I am about the diet. They both agree that I have Celiac. When I last saw my GYN I told her I was on a gluten-free diet and that the horrible cramps I used to get were gone. She was very interested in my story, as I used to go to see her about once every 4 months to complain about the cramps. She said to me "I am so glad YOU figured out what was wrong, and I will have to remember this for my other patients who have unexplained cramping." Wow - a doctor who realized that the patient might know his/her body best and be able to figure out what is wrong!

hi I am new to the site-and really need some help-I have been suffering from severe constipation for year-been on every prescription drug out there and now my doctor is giving me the pills you take before a colonscopy-ugh-I have had a colonic and I just don't know what is wrong with me-eating oat bran, wheat, popcorn, prunes-if it has fiber I have been eating it and no help-I have gone for 5 days without going until I take major laxatives-my friend has celiac and told me to get the test-I decided to try to go wheat free and gluten free first and then see how I feel-I also am going to see an accupuncturist-I am so miserable and I am not sure if this is the answer but everyone on this site seems so much happier....I am going to give it a try-it seems hard-in the supermarket today readhing every label-it seems like everything has wheat in it-any advice would be so greatly appreciated!

[Guest cassidy]

I am a drug rep so I deal with doctors every day. I think there are a couple reasons why doctors aren't supportive.

I have a drug for a disease that is often misdiagnosed. Doctors don't want to hear that they are misdiagnosing their patients. I have to be very careful how I phrase things to even get them to admit that they might need to look at these patients more closely to see if they may have the other disease. My product is for a disease that smokers get. Most doctors diagnose it as asthma. If the patient has a smoking history then my disease needs to be considered. You would think this would be pretty obvious, and it is the 4th leading cause of death, but they don't consider it.

During my lunches with doctors, most ask why I'm eating special food. I tell them celiac and sometimes they have no clue what it is, or they don't know what I have to exclude from my diet, and almost all of them (around 100) have said they have never seen celiac in their practice. Sometimes they ask me questions about my symptoms which aren't totally textbook (my blood work was negative) and I try to educate them, but most of them just don't have a clue.

If you take them not wanting to be second-guessed and them feeling like they know what they are doing and therefore don't need to do research and see if a patient has something "rare" versus ibs or whatever they think it is, and couple that with them learning about this disease state 30 years ago and never diagnosing it, then you have a big problem. If we never use geometry, could we really figure out a tough problem now after being out of school for so long? I couldn't.

I'm not saying this is right, it is very frustrating. I have almost no confidence in doctors for my personal health. I go to an alternative doctor and really have lost faith in the medical community.

Drug companies can no longer give doctors perks for writing their products. I do use doctors as speakers but I like to use doctors that believe in my product and use it because they know it works and not the doctors out there that will speak for every product just for the money (and there are those doctors). Yes, I bring people lunch, but most of these doctors and their staff work hard and don't get lunch breaks. There are a couple of offices that tell me they have twice the number of employees to get extra food - I don't bring them lunch again regardless of how important the doctor is. Most doctors make plenty of money and hopefully don't prescribe products or misdiagnose patients because they think they will get a $1000 speakng engagement from one of the shady drug companies.

[debmidge]

Sprivia medication?

[Canadian Karen]

Good guess. That's the new one out for COPD, isn't it?

[Riayn]

This time around I had a really positive experience. Not only was my doctor happy to test for celiac disease but he is also testing for thyroid disorders and diabetes, plus a full blood panel and HIV and Hepatitis A, B,C. He also has me doing a 3 day stool collection to rule out any parasites.

He also spoke to me about dietary fructose intolerance, which seems to be a very rare and misdiagnosised condition. By the time I left my appointment you could have knocked me over with a feather.

I have all fingers and toes crossed that this time around I may finally have a correct diagnosis.

It proves that there are some doctors out there that do listen to their patients concerns and are willing to test all the possibilities.

[Guest cassidy]

Sprivia medication?

Yup!

[lovegrov]

I don't know about anybody else here but my primary doctor is so busy he doesn't need to misdiagnose me to make more money. He's not even taking new patients because he simply doesn't have the time.

richard

[pinktulip]

It seems my dad and I have had different experinces than everyone else. My dad's doctor was the one who told us about Celiac's Disease, he did a biopsy which actually came back negative but he still sticks by the Celiac's Disease and suggested I get tested. I went to my GI who immediatly scheduled a blood work up and told me to call back later in the day to schedule an endo. I still haven't scheduled the endo ( waiting on work to tell me when I can have off) and am also hoping depending the results he'll skip the endo.