Another Idiot Doctor

[GlutenWrangler]

Hey Everyone,

So I decided that I needed to get tested for food allergies. I decided to get the ELISA test, which covers 132 foods. It has to be ordered by a physician, so I brought the paperwork to my allergist's office. The nurse had him sign it, and after the Lab received it from me, the kit was sent out. Usually patients have their doctor draw their blood, and then it is sent out to the Lab. So when they told me that they don't draw blood in the office, I brought it to the lab. But they refused to draw my blood without an order from the doctor. So the nurse told this to the doctor, and he decided that he wanted to talk to me about it today. I went to see him, expecting to finally get my blood drawn. Keep in mind that my insurance covers the cost of the test, but I have to pay $75 for the kit.

This is where it gets ridiculous. He asked me about all of the information about the test. I showed him all of the foods that are tested. He said that results from food allergy tests don't always correlate with a patient's reaction to a food. Because of this, he said testing for 132 foods is "bad medicine". He then went on a rant about how I'm opening myself up to all of these costs, even after I told him my insurance will cover it. He went on and on about how he wishes he could get some high tech CT machine with multiple slides, but he had to pay attention to the cost, which apparently is what I'm supposed to do. He then said "so I'm not going to sign this". I reminded him that he already DID sign it. He responded with "oh the nurses said it was a test for your celiac disease". Why would I need another test for celiac disease? I was astounded when I left his office. Bad medicine? Has anyone else had their doctor say food allergy testing is "bad medicine"? Anyway I'm just going to have my primary care doctor do it. But doctors make me sick. Thanks for listening.

-Brian

[CMCM]

Ha ha ha, yep, what else is new???? We've really got to stop expecting much from doctors....we're brought up to think of them as some kind of all knowledgeable "gods", but they sure aren't! The fact is, they study general things, sometimes very specific things, but overall, they aren't particularly knowledgeable about all things as we expect them to. I've given up....I have my stable of questions based on my own knowledge...and if they seem clueless, well, they ARE! End of confidence in them! I've YET to meet a doctor who knows more or even as much as I do about celiac/gluten issues. Most barely know enough to fit on the head of a pin, and more than a few never heard of it!!! Buyer beware....

[CMCM]

Gosh darn, my last comment seemed really negative, didn't it??? Well, all I can say is DOCTORS DESERVE IT!!! :lol: :lol: :lol:

[GlutenWrangler]

They really do deserve it!

[Adelle]

I just had my 2nd allergist refuse to do ANY allergy testing. I'm experiencing a quite painful allergic reaction right now! Yar. Yes doctors suck. ahhhhhh!

[marciab]

Your doctor certainly has a way with words ... Like he needs a fancy CT machine

But, I have to agree partly with what he said.

Before I had ever heard of celiac, my daughter had some allergy tests done because she swells up on a regular basis. Anaphylaxis from time to time ... but mostly her face gets puffy ... The skin prick test in the Allergists office showed that she was very allergic to peanuts, but the blood test (Rast, I believe) showed that she was not allergic to peanuts.

However, She is allergic to peanuts, but doesn't react everytime. My sister is the same way. She can eat chocolate from time to time, but if she eats too much she swells.

I know it's a pain, but you can watch what you eat and / or keep a journal to look for food allergens.

Marcia

[sonja69]

it's really astonishing that non-knowledge of the 'medicine men' community is so global. whether you're in europe (germany, sweden) or in the US and canada, there are so many that actually have no ideas about medicine, about illnesses, symptoms, treatments and unfortunately so few who knows what they're doing.

if I would do my job in the way that dr do, no lake or stream would be alive and of use for humankind (I am an aquatic ecologist).

I made bad experience with dr already as a kid, and now as an adult, I always have to tell them what to do, like test this, do this,do that, and they always try to know better.

I wish I do not have to go to them for test, which I cannot make at home (like IgE allergy tests).

I really can live without them, they are not my friends, thats fo sure.

Sonja

[rez]

We did have a similar experience w/ our peds allergist and our son. The ELISA test clinically are not very proven or accurate. At least that's what he told us. Sometimes it's difficult, but I think we should look at both sides. Being a physician is just like any other profession, there are good and bad. Also, it's hard not to stereotype. No one would generalize someone by their skin color or race. Please be codsiderate to those wonderful doctors out there, and remember that some are members of this board. I'm not saying that many doctors need to be educated on Celiac, I'm just saying, please be careful not to generalize. We had negative experiences, but now are working with an excellent doctor. Good luck.

[rez]

Sorry, I meant many docs do NEED to be educated. I'm in a hurry to get to my son's b-ball game. Sorry for the grammar and spelling errors. Good luck!

[GlutenWrangler]

I don't mean to sound like I'm generalizing. There are in fact, many great doctors out there. I have a great doctor that has helped me tremendously with a separate condition. The point is that many doctors have a horrible way of practicing medicine. The first thought is always towards medication, they do not listen to what patients are telling them, they belitte patients for asking questions, they rush to get to the next patient, they do not provide proper support or resources when needed, they look for the easiest solution, even when it doesn't fit, they lose interest when you fail to recover, they refuse to look at new research and developments, and they do not look out for what is best for the patient. If my old gastroenterologist would have looked at my situation objectively, he could have ran the proper tests instead of diagnosing me with IBS. And if he did that, I would have never had to go through the hell that I'm going through now trying to heal. I have lost close to 3 years of my life suffering because a doctor couldn't do his job. It's almost ridiculous to have any hope to get help with doctors today because medicine is not about the patient. Today, it's about business. It's a sickening situation, and we as the patients lose out the most.

-Brian

[debmidge]

Brian we (my husband and I agree with you) -- he went thru 27 years of doctor to doctor to doctor to get no where. Finally a European/India educated doctor finally found the cause of his multiple illnesses but it is a little too late: the permanent damage has been done and his life is a shell of what it could have been if they only had diagnosed him years ago. These bad doctors were not because they were in a HMO and the only doctors we could have went to either......remember, back then there was no internet to look things up on and books in libraries weren't geared to diagnosing yourself. After diagnosis I did go back to library to look celiac up and one of the books I found stated that it was a childhood disease...so there was a lack of info during pre-internet days where you were forced to rely on medical professional for everything.

I have other stories about bad medicine that do not involve celiac but I'll leave that for another time.

[Fiddle-Faddle]

He said that results from food allergy tests don't always correlate with a patient's reaction to a food. Because of this, he said testing for 132 foods is "bad medicine".

-Brian

Just playing Devil's Advocate here--isn't he correct about this? Food allergy tests DON'T correspond to reaction. Celiac proves this!

He may be a total jerk, and he may or may not have made the correct decision in your case.

Why do you think you need to be checked for 132 food allergies? Are you having continued problems that the gluten-free diet is not helping?

Still playing Devil's Advocate here--is it possible that, at least with that doctor (heck, probably all doctors), you need to "prove" your case before getting him on your side? (Maybe you did and you just didn't write about it. It sounded to me like you just marched into his office and demanded to be tested for 132 allegies, but maybe I missed something.)

[GlutenWrangler]

I asked for the test because I think I have other food sensitivities. I didn't march into his office and demand it. I asked if he would order it for me, which he did. It was when it was time to have my blood drawn that he refused to do it. Obviously I'm not going to be allergic to all 132 foods, but I like the idea of having everything covered. I really don't care about there being no correlation between positive results and reactions. For the purposes of my own health, I would like to know what my body is reacting to any any level. The main point is that it's my health, not his. If my insurance covers it, where's the harm in it? Not to mention how unprofessional it is to order the test for me, and then refuse to complete it after I spent $75 on the kit.

[rez]

Please don't think I'm not empathetic to your situation. I am. I just correspond with a wonderful person on here who happens to be a doctor. She is very knowledgable and tries to help whenever she can. We've been dealing with these issues with my son for over a year and we're on our 7th doctor. I have found two wonderful doctors through our journey whom I now am working with. I am very passionate about raising Celiac awareness and I think that's how I'm going to channel my frustrations. Again, best of luck to you.

[Michi8]

I asked for the test because I think I have other food sensitivities. I didn't march into his office and demand it. I asked if he would order it for me, which he did. It was when it was time to have my blood drawn that he refused to do it. Obviously I'm not going to be allergic to all 132 foods, but I like the idea of having everything covered. I really don't care about there being no correlation between positive results and reactions. For the purposes of my own health, I would like to know what my body is reacting to any any level. The main point is that it's my health, not his. If my insurance covers it, where's the harm in it? Not to mention how unprofessional it is to order the test for me, and then refuse to complete it after I spent $75 on the kit.

It was very unprofessional of him to order the test and then refuse to complete it! However, I would be hesitant about relying on this type of allergy testing...especially when it's testing for so many specific foods. I would be concerned, especially, if you were to get a false positive to foods you aren't actually allergic to...it would be a shame to end up eliminating a food if you don't really have a problem with it. It really is more accurate, though time consuming, to do an elimination diet to test for food reactions.

I've had the skin-prick and patch allergy testing done and found, that while it seemed to be fairly accurate for my environmental allergies, the food tests were hit and miss. I tested negative on some stuff that I had always been allergic too, but I sometimes still have the odd reaction even though I've "outgrown" my allergy. I think that the severity of reaction is what has really changed, in addition to foods that cross-react with pollen allergens.

Michelle

[GlutenWrangler]

I accept the fact the it's not a perfect test, and I'll have to use my own judgement when deciding what to eat after I get the test done. I have another doctor, and I'm not wasting the $75. It is not always easy to tell exactly what I'm reacting to. With the ELISA test, I can at least find out what my body is reacting to the most. Whether or not this translates into a physically perceptible reaction is another story. But the point is that it should be my decision. And regardless to what this doctor says, it will be my decision. I don't need a doctor's opinion when it comes to making a decision about my own health. Just look at all of the people on this site who decided for themselves to go on the diet, even after doctors said it is not celiac disease or gluten-sensitivity. In the end, we know what is best for ourselves.

[Lisa]

I would like to sneak in here an add something.

We have had several doctors (who were celiac) post here and offered a great deal of medical support and guidance. They have spent hours here posting with no compensation other than supporting fellow celiacs with their knowledge.

Although, many of us have had very bad experiences with many doctors (myself included), I appreciate the ones that truly want to help. I share you frustration about not getting the answers needed for good health, uneducated on celiac and rude office staff. We've all been there.

Unfortunately, some doctors that have posted here don't stick around very long or go undercover. One doctor here continues to send personal messages to people with issues on their off time.

I would like to offer appreciation for that and offer them an environment that is encouraging. We're talking family here and all connected by common bond.

Ok, end of soap box.

[GlutenWrangler]

I don't think that my post should in any way serve as a deterrent to those good doctors who provide support on this site. I think it is great that they are here to help. The problem is that it we need more of those types of doctors out there when we go to an office visit. It is appalling that many of us can't praise our own doctors for the good work that they have done for us. But please don't confuse my post with a generalization towards all doctors. It is just a personal experience, although, it is an all too common experience. But I don't think we would find any doctors on this site who spend 10 minutes explaining how they want a new CT machine.

[Guest happynwgal]

Brian we (my husband and I agree with you) -- he went thru 27 years of doctor to doctor to doctor to get no where. Finally a European/India educated doctor finally found the cause of his multiple illnesses but it is a little too late: the permanent damage has been done and his life is a shell of what it could have been if they only had diagnosed him years ago. These bad doctors were not because they were in a HMO and the only doctors we could have went to either......remember, back then there was no internet to look things up on and books in libraries weren't geared to diagnosing yourself. After diagnosis I did go back to library to look celiac up and one of the books I found stated that it was a childhood disease...so there was a lack of info during pre-internet days where you were forced to rely on medical professional for everything.

I have other stories about bad medicine that do not involve celiac but I'll leave that for another time.

I know so well what you are talking about in regard to doctors and misdiagnoses. At 54, I have lived most of my life with celiac, but had to find it out myself because doctor after doctor refused to believe how sick I was!!! Go figure. Back in the mid '80's, I had a horrible experience with a doctor who, during his examination of me, pratically put his whole arm up my rear end - and then told me it was all in my head. I went home and cried from humiliation for days.... After that experience, I refuse to have any exam in that particular area of my body - I was totally freaked out.

Doctors should be ahamed of themselves. Where I go to church we have a few doctors and several medical students in our congregation. They are all nice men and women, but I have little respect for their chosen profession. There are a few doctors out there who are very good - I saw one, a neurologist, for a recent head injury this past week, and he went above and beyond the call of duty, to my great surprise. His kind are few and far between.

I had to find out what caused my ill health myself, and asked for a gluten test in December last year. Had I not done the research and tried numerous diets myself, I would probably still be in the same mess I have been for most of my life.

I hope we all have better luck with doctors as we go along, and that we are willing to tell them when they screw up. Someday they will come down to our level and feel WITH us...

[Fiddle-Faddle]

GlutenWrangler, I apologize if I am misunderstanding you, but I am seeing this from a different perspective.

It's hard enough to get a doctor to agree to order just the celiac panel, even when we have already "proven" the existence of a probable cause just by dietary response. But when you request to be tested for 132 allergens and say that insurance will pay for it, even if your doctor does okay it, that makes it that much harder for the rest of us. The insurancemay pay for your 132 allergen tests, but it will make up the loss by refusing to pay for someone else's truly necessary, Life-and-Death test.

If you think you have a problem with food allergies, then do an elimination test--that's more reliable anyway, doesn't cost you (or anyone else) a thing, and you don't need a doctor's approval. If you find from the elimination test that you react to something, you can then either eliminate it from your diet, or, if you still want confirmation, then present your evidence to your doctor and ask for tests for the things that you react to.

Am I the only one who sees something wrong with a patient who walks in and requests expensive tests for something that can be confirmed more reliably by an elimination diet? Yes, your doctor may very well be a jerk and/or an idiot. Or, he may have found himself in a situation where he made what he sees as a mistake (by agreeing to the test in the first place) and now wants to correct the mistake.

The only part where I agree with you is that you had to shellout $75 based on his initially approving the test. Can you return that and get your money back?

[Judyin Philly]

Brian--

Just a word of encouragement as you travel this long road to good health.

I had a 'probably' celiac dx 19 months ago and went gluten-free next day.

5 months into great results more intolerances came up..and still have some issues so.....

just sent in EnterolLabs testing yesterday. I need more answers too. Elimination diet just wasn't doing it for me.

Keep the faith..hugs

Judy

[jerseyangel]

Hi Brian,

I did fine on the gluten-free diet for about 5 months. At that point, I began to get a lot of my old symptoms back--the GI stuff, and the anxiety.

I suspected other intolerances, and considered the blood testing. I found a great allergist/immunologist who also suffers from food intolerance and has a Celiac aunt! He explained to me that those tests result in a lot of false positives, because once you eat a food, you develop antibodies to it. People end up doing an elimination diet anyway, because of the number of positives--they have to further narrow down the offenders.

He did standard allergy testing, and then recommended an elimation diet. This took months, and was not very simple or convenient--but I was able to identify my sensitivities. A good allergist (who deals with food allergies) will be able to guide you through an elimination diet. You can also do it yourself with the help of a detailed food journal. As Judy pointed out, Enterolab can help you with some of the foods that they offer panels for.

All of that said, I don't blame you at all for getting mad that your doctor initally agreed to the testing, and than changed his mind at the last minute. I've had my share of doctors that I was less than satified with--it only took about 20 years for me to get this diagnosis! I've also had some wonderful ones. Just like life, I guess...I wish you luck with which ever way you decide to go with this. It's a terribly frustrating problem.

[Michi8]

GlutenWrangler, I apologize if I am misunderstanding you, but I am seeing this from a different perspective.

It's hard enough to get a doctor to agree to order just the celiac panel, even when we have already "proven" the existence of a probable cause just by dietary response. But when you request to be tested for 132 allergens and say that insurance will pay for it, even if your doctor does okay it, that makes it that much harder for the rest of us. The insurancemay pay for your 132 allergen tests, but it will make up the loss by refusing to pay for someone else's truly necessary, Life-and-Death test.

If you think you have a problem with food allergies, then do an elimination test--that's more reliable anyway, doesn't cost you (or anyone else) a thing, and you don't need a doctor's approval. If you find from the elimination test that you react to something, you can then either eliminate it from your diet, or, if you still want confirmation, then present your evidence to your doctor and ask for tests for the things that you react to.

Am I the only one who sees something wrong with a patient who walks in and requests expensive tests for something that can be confirmed more reliably by an elimination diet? Yes, your doctor may very well be a jerk and/or an idiot. Or, he may have found himself in a situation where he made what he sees as a mistake (by agreeing to the test in the first place) and now wants to correct the mistake.

The only part where I agree with you is that you had to shellout $75 based on his initially approving the test. Can you return that and get your money back?

The cost of allergy testing is very low compared to many other types of tests (genetic testing or MRI for example) so I don't see an issue with insurance paying for it, nor do I see how it would really affect how a different patient would end up not getting coverage for something that is "life & death." Insurance doesn't really work that way...they will make up losses by raising premiums instead. When I did my own allergy testing (prick test and patch test) I had to pay for the kits out of my own pocket, insurance wouldn't cover it at all. The allergist who did the test got paid though (provincial public insurance.)

Michelle

[Fiddle-Faddle]

The cost of allergy testing is very low compared to many other types of tests (genetic testing or MRI for example) so I don't see an issue with insurance paying for it, nor do I see how it would really affect how a different patient would end up not getting coverage for something that is "life & death." Insurance doesn't really work that way...they will make up losses by raising premiums instead. When I did my own allergy testing (prick test and patch test) I had to pay for the kits out of my own pocket, insurance wouldn't cover it at all. The allergist who did the test got paid though (provincial public insurance.)

Michelle

Here in Pittsburgh, it's EXTREMELY expensive, as is all bloodwork. I don't know if that's true for all the States, or just here, but I was assuming (perhaps wrongly) that it was so everywhere.

BTW, I LOVE your mood swing warning!!!!

[Rachel--24]

I hate to say it (and this might be a first for me)....but I actually agree with your Dr.

He clearly doesnt believe the test has any validity....so why should he go against his belief and order it for you??

I had the test...I paid about $350 out of pocket and the results didnt tell me anything. Elimination diet is the best way to go. I dont believe the test is accurrate enough to really be of any help. Just my opinion.