Many Doctors Are Not Supportive Regarding Celiac

[BamBam]

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.

[Ursa Major]

I agree with you 100%. But really, the doctors don't recognize celiac disease, because the medical schools (which are controlled by the pharmaceutical companies) don't teach them about it! And often what they do teach them isn't accurate.

What they teach them is mostly about which drug to prescribe to mask which symptoms.....unless you need an antibiotic to combat a bacterial infection (in that case, the treatment may be valid). For the most part, they don't get taught how to actually look for causes, and how to cure the underlying problem.

A good example is the 'diagnosis' of IBS (irritable bowel syndrome). If you think logically, you might wonder, what is it that is causing the irritation? Let's find out, and eliminate the cause, and cure this person (I believe it is usually an intolerance, which is very often to gluten, dairy or soy, and many times all of those). But of course, if doctors would cure all their patients, we wouldn't need as many doctors any more. And drug companies wouldn't make money, if everybody just changes their diet.

[daffadilly]

Totally Agree...

I believe, You are what you eat !!!!

I am the oldest in my family and the healthiest.

I have to go to the doc once a year to get my blood pressure med script. I am always afraid that I will catch a germ from some of the sick people there!!!

I think testing is totally optional. I do like the gene test to see if you have the genes. Some disagree with me but I think if you have the genes and you have ANY symptoms you need to be gluten-free. If it were my loved ones I would want them to be gluten-free if they have the genes even if they had no symptoms. But my mother died of colon cancer and I think the gluten-free diet is the best cancer prevention there is!!!!

[DVK]

I would say Doctors dont care or almost laugh when you bring it up to them. How about this, My Doctor is my Uncle and I have been having symptoms of, Tired, Constant gas stomach rumblings, Burping, Anxiety, Itchy skin, Specially on my scalp, Slightly elevated Lipase for the pancreas, Weird pains here and there and he smirked when I said celiac disease. He seems to think its my Pancreas, but all my Ultra sounds are normal and Enhanced CT Scan was normal, and all other Blood tests. I think they dont first of all like you telling them about the research or what you think it might be, but they are not the ones who all of a sudden had a trigger and now its full blown. I still have not been diagnosed however since finding this site and pointing out symptoms he finally agreed to take blood for it, and his words were " If it will make you feel easy I will do it" Like sure ok whatever. So here I wait for my results on my 3rd day of being gluten free, I hope , Eating Wendy's Grilled chicken and baked potatoes, and Platers Peanuts Cause I am waiting on food to be delivered that I can eat, Today I felt Better no rumbling and had energy until about 4 so almost made it all day at the office. So I hope this site stays around cause it saves many people I bet.

David

[Riayn]

A good example is the 'diagnosis' of IBS (irritable bowel syndrome). If you think logically, you might wonder, what is it that is causing the irritation? Let's find out, and eliminate the cause, and cure this person (I believe it is usually an intolerance, which is very often to gluten, dairy or soy, and many times all of those). But of course, if doctors would cure all their patients, we wouldn't need as many doctors any more. And drug companies wouldn't make money, if everybody just changes their diet.

I agree. I was "diagnosed" with IBS five years ago with no other testing being done. With that diagnosis came anti-depressants and anti-diarrhea medication. Initially it did help, well, I wasn't spending all day every day in the bathroom, but it never really stopped any of my symptoms, just lessened them to where I could live a somewhat normal life again. On Monday, I am demanding that they do some testing. Should be an interesting doctor's appointment.

[bklynceliac]

While I agree about the benefits of the gluten-free diet, to suggest that doctors won't diagnose because they'll stop making money off us is fairly prepostorous. Obviously, there are a few bad apples, and many people have negative experiences, but doctors are for the most part interested in genuinely helping their patients.

[Ursa Major]

While I agree about the benefits of the gluten-free diet, to suggest that doctors won't diagnose because they'll stop making money off us is fairly prepostorous. Obviously, there are a few bad apples, and many people have negative experiences, but doctors are for the most part interested in genuinely helping their patients.

I agree that most doctors are simply ignorant of celiac disease, thanks to them not being taught what the symptoms are (other than diarrhea and weight loss). They mean well, but are clueless. Like my own doctor. All summer last summer she tested me for parasites, bacteria, blood in the stool and many other things. Eventually, when I told her point blank that I have celiac disease (after trying the diet with miraculous results), she said, "well, I know you had all the symptoms, but I didn't think it could be celiac disease because you weren't losing weight, so I didn't test for it."

I explained to her that unexplained weight GAIN is also a common symptom of celiac disease. That visit was solely to educate her, and she took notes. I hope it helped the next person coming to her with the same symptoms.

It's the medical schools that need to teach the doctors properly, rather than representatives of drug companies teaching courses on how to 'manage' diseases with drugs.

[zansu]

I had been seeing one of the top GIs in my area for 6 years, and it was a new GP straight out of residency that diagnosed me. But she didn't order the tests, said they weren't always accurate, and she dismissed my negative endo and told me to try the diet. If it worked, we knew, if it didn't we'd look elsewhere. I hated to move away from her. She was very practical and helpful. But even she thought getting rid of MOST of the gluten would help.

BTW, other doctors can be educated IF you don't sound like you're trying to tell them about THEIR field. Had a lovely discussion with my GYN yesterday about why I needed to have the prescription for the brand name since I can't count on the pharmacy to know what was in the generics. She said it made sense, but she'd never thought about it and the PDR only says starch, not what kind. I told here I spent several weeks arguing with Walgreen mail in and finally had to tell a manager "You poisoned me" before I got results.

[Mary Contrary]

While I agree about the benefits of the gluten-free diet, to suggest that doctors won't diagnose because they'll stop making money off us is fairly prepostorous. Obviously, there are a few bad apples, and many people have negative experiences, but doctors are for the most part interested in genuinely helping their patients.

I agree, I am still in the early stages of getting better and just went to a fantastic Gastro Doc this week and he listened to my tale of woe and he thinks i am right on the money...i have already had blood work from my regular Doc, and it was negative, but I am having small intestine biopsies taken on Tuesday along with a colonoscopy to check out everything else..but I have been wheat free for 2 months now and am finally starting to see some improvement in my 3 month battle with the constant big D...and also my bloasting and gas have gone away...even if my biopsies show nothing, I am sticking to this..nothing else has helped except Psyllium husks a bit...

I have every faith in this Doctor, he really seemed to genuinely care and listen to me. Thank goodness..not like my regular doc who told me to go home and eat toast...

[4getgluten]

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!

[Mary Contrary]

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!

boy that is it in a nutshell, I am 54 years old and I know my body and how it works pretty darn well...and I know I am most def on the right track here.....I am having everything checked out on Tuesday, just for piece of mind if nothing else, but I will continue with the no gluten no matter what the test may show or not show.

[4getgluten]

boy that is it in a nutshell, I am 54 years old and I know my body and how it works pretty darn well...and I know I am most def on the right track here.....I am having everything checked out on Tuesday, just for piece of mind if nothing else, but I will continue with the no gluten no matter what the test may show or not show.

Yes, have all those tests done on Tuesday. It is good to have everything checked out. I only had a colonoscopy - which came back normal. That helped convince me that I had a food intolerance, and not something else. Good luck w/ your tests! Keep us posted on the results.

[par18]

Basically I think it is just ignorance on the part of most doctors. Lack of education in this particular area is probably the biggest reason. If a patient happens to mention Celiac to the doctor and it is dismissed as "it can't be that" is both ignorant and irresponsible. I was fortunate to have a GI who asked me on my one and only visit what I thought was wrong. I said colitis and he said it was a good guess but he did not think so. He was right and had me scoped two days later. I wish I had know enough about Celiac to have suggested it and saw what his response was. I think he might have agreed. He did not strike me as the type of person out to try to impress anyone. I don't expect the average family doctor to suggest early on that Celiac may be the problem and offer the diet as a solution but it can happen and I think one day it will be commonplace. This however will be when no one can afford health insurance and we must go back to looking at natural cures first. Getting the average patient to buy into that way of thinking may be more difficult. That you can blame on the prescription drug companies. I offer as proof to this comment the question. How many of you who were ultimately diagnosed with Celiac were on some prescription drug for your symptoms for over 6 months prior to your diagnosis? For some it was probably "years".

Tom

[Mary Contrary]

Yes, have all those tests done on Tuesday. It is good to have everything checked out. I only had a colonoscopy - which came back normal. That helped convince me that I had a food intolerance, and not something else. Good luck w/ your tests! Keep us posted on the results.

that is how I feel and let's face it we all want to rule out the big C.....I won't go see them again until the 20th I think it is, for all the results, but I will know some of them on Tuesday they said.

and par 18, I really got the feeling that my new Gastro Doc was listening and thought I was on the right track in my thinking, but my regular Doc just gave me some strong, somewhat dangerous, judging from the side effects, drugs for the D. and they did no good anyway.

[tarnalberry]

I don't think it has to do - on the doctors' side - with money. They don't get a kickback with each prescription they write for you. If you want to argue there's no money in it for pharmaceutical companies, and hence they don't keep it in everyone's eye, that's a different argument. Or maybe I have more faith in people than to think they're always out to get you, even when they're in a role designed to help you.

I think part of the reason doctors don't look for it, is that they believe the diet is too hard. They're supported in this belief by studies showing, IMHO, shockingly low compliance rates. Heck, just look at how many people on here complain about the diet! (I'm not saying we shouldn't, just noting that it's not inconceivable for doctors to derive a picture of a seemingly impossible diet for something that they believe to be very rare - so they don't think they should check very often and don't want to check.

[Guest nini]

Tom, yep I was on at least 23 prescriptions prior to my dx, and had been on at least half of them for 3 years or more. Ridiculous. Now I'm on only one prescription.

[par18]

I think part of the reason doctors don't look for it, is that they believe the diet is too hard. They're supported in this belief by studies showing, IMHO, shockingly low compliance rates. Heck, just look at how many people on here complain about the diet! (I'm not saying we shouldn't, just noting that it's not inconceivable for doctors to derive a picture of a seemingly impossible diet for something that they believe to be very rare - so they don't think they should check very often and don't want to check.

[nikki-uk]

I have yet to meet someone who was extremely ill and finally got diagnosed that was not making every effort to be 100% gluten free.

Tom

Hit the nail right on the head there Tom!!

My hubby was seriously ill pre dx - and he can't afford to ever go back there

[tarnalberry]

Yeah, sure, anyone knocking on death's door isn't going to ignore the diet, but the fact is that most people aren't there. That's not the picture that doctors see, that studies see, or that is representative of the bulk of celiac cases.

We all hear about or have friends/family who aren't supportive without a diagnosis, and those are hard to come by. Most people don't have such serious symptoms, or the confidence to listen to their bodies over the collective "wisdom" of generations of people who healthfully eat gluten. So it becomes difficult to stick with in practice. We have people on here asking, from time to time, if others cheat "too". But *this* board is a biased sample of people who are far more proactive about their health than the tens of thousands of celiacs out there who know they are gluten-intolerant. And we're not terribly accepting of people who want to keep eating gluten (not that I'm saying we should promote that at all) - so it further skews are sample if you use this board as a basis of compliance. Hopefully we're doing our part to increase compliance, but it's not nearly the same thing that doctors see. Not to mention the fact that the rate of change in the belief of the ease of the diet (enough prepositional phrases there! ) is varies in different populations, and ours is probably a lot higher than the doctors'.

[debmidge]

I don't think it has to do - on the doctors' side - with money. They don't get a kickback with each prescription they write for you. If you want to argue there's no money in it for pharmaceutical companies, and hence they don't keep it in everyone's eye, that's a different argument. Or maybe I have more faith in people than to think they're always out to get you, even when they're in a role designed to help you.

I think part of the reason doctors don't look for it, is that they believe the diet is too hard. They're supported in this belief by studies showing, IMHO, shockingly low compliance rates. Heck, just look at how many people on here complain about the diet! (I'm not saying we shouldn't, just noting that it's not inconceivable for doctors to derive a picture of a seemingly impossible diet for something that they believe to be very rare - so they don't think they should check very often and don't want to check.

I have to disagree with this as I have relatives in pharma field and doctors who prescribe a lot of one manufacturers products gets "perks" -- maybe not money but vacations, $$ for speaking engagements, etc. They are first on the list for these perks. That is how the money is tied in at times.

I am also told that the doctors "vie" for this extra profit and get annoyed when they are passed over and they also demand special treatment when they have this 'perk' bestowed on them; such as an upgraded hotel room, etc.

Our experience over 27 years (1977 to 2003) bears out that there was incompetence, arrogance, disrespect and pompousness ....at one point unbeknownst to me at the time, I gave the gastro the diagnosis of celiac on a silver platter (in 1994) wherein I described my husband's condition as being "malasborption issues" and the Dr. growled at me that "this isn't what's going on here." I began to cry right in front of this doctor. He was only one in a series of misdiagnosises...every doctor we went to we were hopeful he would find the cause of my husband's disgestive issues. We were left grasping straws.

As with everything in life, the aforementioned may or may not have happened to you. Like the investment ads say "you may not achieve similar results."

[tarnalberry]

I have to disagree with this as I have relatives in pharma field and doctors who prescribe a lot of one manufacturers products gets "perks" -- maybe not money but vacations, $$ for speaking engagements, etc. They are first on the list for these perks. That is how the money is tied in at times.

I am also told that the doctors "vie" for this extra profit and get annoyed when they are passed over and they also demand special treatment when they have this 'perk' bestowed on them; such as an upgraded hotel room, etc.

That's not quite the same as a kickback for specific prescriptions. I see your comparison, however, and do believe that sort of thing should be closely regulated (if allowed at all) as the potential for untoward influence is high. (I've been involved in this with a poor choice of antibiotic being prescribed to me by my allergist, so I do know where you are coming from.)

At the same time, I suppose my rosey-colored glasses make it hard for me to believe that doctors would engage in potentially criminal medical negligence by avoiding a diagnosis they know about in order to prescribe unnecessary medications so they get vacations and speaking engagements. It's also a level of unethical that I can't see any but a tiny tiny fraction of people doing. ('Cause there's always someone who will do anything.)

[debmidge]

That's not quite the same as a kickback for specific prescriptions. I see your comparison, however, and do believe that sort of thing should be closely regulated (if allowed at all) as the potential for untoward influence is high. (I've been involved in this with a poor choice of antibiotic being prescribed to me by my allergist, so I do know where you are coming from.)

At the same time, I suppose my rosey-colored glasses make it hard for me to believe that doctors would engage in potentially criminal medical negligence by avoiding a diagnosis they know about in order to prescribe unnecessary medications so they get vacations and speaking engagements. It's also a level of unethical that I can't see any but a tiny tiny fraction of people doing. ('Cause there's always someone who will do anything.)

Tiffany, it is a "kickback" of sorts....let's say it's a heart drug & Dr. is cardiologist. If he's their "top" prescriber he is sitting pretty. I have had a GP refuse to give me a radioactive thyroid uptake test to see if I had thyroid cancer because he was at the end of the year (December) and didn't want any more major testing going on because it was going to affect his insurance company HMO bonus. I learned that not from him but from another doctor. So there's a situation tha a Dr. did engage in potentially medical negligence by putting his greed first.

In the case of the cardiologist, let's say that Drug Company A makes a better product, but he knows that if he generates more sales for company B he gets that lucrative speaking tour for company B which could net him $100,000 for a year?

I will refer you to the movie "The Godfather" wherein Michael Corleone tells Kay that even Senators get men killed when they are in the way.

[tarnalberry]

Tiffany, it is a "kickback" of sorts....let's say it's a heart drug & Dr. is cardiologist. If he's their "top" prescriber he is sitting pretty. I have had a GP refuse to give me a radioactive thyroid uptake test to see if I had thyroid cancer because he was at the end of the year (December) and didn't want any more major testing going on because it was going to affect his insurance company HMO bonus. I learned that not from him but from another doctor. So there's a situation tha a Dr. did engage in potentially medical negligence by putting his greed first.

In the case of the cardiologist, let's say that Drug Company A makes a better product, but he knows that if he generates more sales for company B he gets that lucrative speaking tour for company B which could net him $100,000 for a year?

I will refer you to the movie "The Godfather" wherein Michael Corleone tells Kay that even Senators get men killed when they are in the way.

I would hope that if you opted not to confront him, you've switched doctors, written a letter to him, and to the BBB. Otherwise, by continuing to support his practice, you support that behavior.

The case of *switching* meds from one company to another is a different situation of *not treating* a condition (which is more akin to what you prescribe in the first paragraph).

I'm not trying to say it doesn't happen ever, I'm trying to say that I find it hard to believe that it's the rule rather than the exception. I don't claim to not be overly optimistic, of course.

[Riayn]

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.

[ptkds]

I didn't read alot of the posts, but I do have to disagree that dr's won't diagnose celiac disease because of money.

When I went to my family dr and asked him to test me, he agreed and didn't argue or try to "reason" with me even though I am overweight. When I asked my dd's pedi to test her even though her symptoms are very minor, she totally agreed w/ me and tested her w/out argument. And my other dd's pedi tested them w/out a problem. The only dr I have had a prob with is the pedi GI. But I don't think it was due to money. I think it was just plain ignorance.

Not all dr's are money grubbers, so it is unfair to make that claim.

ptkds