Okay - every time I find out about an idiotic remark made by a doctor regarding Celiac disease I think it can't get wose. And yet is continuously does.

My Mother told her pcp that only Asian-Americans have a higher risk of intestinal cancer if they have Celiac disease.....ummmmmmm let's see that's NOT true and most Asians in Asia don't have Celiac since they eat mostly rice for their starch.

So today my sister goes in to ask the same pcp to get tested for Celiac and the doc says something along the lines of unless you want to change your whole life you may not want to get tested in case you have it.....excuse me???!!! I'm so mad I can't think straight and I can't even call my sister until I calm down. It's like the hemo doc that told me they hate to tell anyone to go on the gluten free diet since it's so hard. Oh but if you have cancer they don't feel bad about telling you to have chemotherapy. What is going on that our doctors are this screwed up?!!!!

Nisla - I hope you see this note but if you don't I'll e-mail you later. I'm just furious!!!!!!!!!!

Tiffany--
That is flippin' crazy. Makes me crazy b/c there may be folks out there suffering or damaging themselves b/c they took that crazy advice!!

I know Jen - I just had to unpack my gluten-free goodie box for my Mother that I was mailing along with Dr. Green's book. I had to find all the malignacy info parts of the book, flag it and then highlight it so she can show her freakin' idiotic doctor. And this doctor is so up to date Celiac testing that she highlighted the Celiac gene info she found in her medical ref. book and told Mother to ask me what it was....it was the HLQ info. Why can't doctors at least read up on current Celiac when they have a patient who has it? This is ridiculous!

No wonder so many other countries medical communities' are laughing at the great USA's retarded medical sysytem and I see now that Celiac is just the tip of iceburg on what our docs don't know. And please if you work for or are a doctor, don't try and defend them....I also was told by my PT on Friday that it's all about the insurance companies owning the docs and unless you're going to a doc who doesn't accept insurance you should know you're probably not getting the best care out there. I almost fell off the PT table!

I get the impression that doctors don't have the internet. Google "celiac disease" and in 5 minutes you can know all that you need to know. Some doctors just think they don't need to research with the little people, being that they are Medical Dieties

What horsepoop.

Good thing your sister didn't go in to get tested for cancer, eh? Good thing she didn't think she was having a heart attack. Hope they're finding a good doctor to go to other than that yahoo.

Their next finest answer to women is: "it is all in your head" or "it is menopause."

Tiffany--That is terrible! And I agree with the chemo analogy. God forbid someone has to go on a gluten-free diet to save their life--but if you need the drug/surgery--go for it! And Chelsea--I so agree--if I can aquire this much information and knowledge on the subject, with my limited brain capacity, why the hell can't a DOCTOR do at least the same thing? Jeez

Chelsea, is that your wedding picture. If it is - WHAT A BEAUTIFUL BRIDE you are, or were, or whatever

Nothing surprises me on what a doctor will say.

T-It is a pity about the insurance companies. I've learned much in the past year about how they and the pharmaceutical companies exert much will over the medical community. Guess we need to target them alongside the doctors with education etc... Hope your mom listens well to you and enjoys her care package

Wow, that doctor needs to be hit over the head with Dr. Green's book! What a terrible thing to do to a patient!

Thanks everyone....glad I was not just overreating. My husband just called and I told him what happened and he said 'I think that's bordering on malpractice'. And you know he's right! Not that we're ones to sue but still - if this doc tells others this untrue info, she is perpeturating an out of control problem regarding Celiac and proper diagnosis of it.

Thank you! Yeah, that's one of the candids from the wedding. DH and I have been married almost 9 mos! (I know that because my best friend just had her baby, and she found out she was preggers a few days before the wedding )

Heck yeah it's malpractice! Report them to the AMA at least! Or the BBB, heck, anybody. The AMA would be very interested to hear about that kind of talk...

I like doctors that take all of the free crap from the Rx companies and then tell their patients the truth. Example: my allergist- he gave me zyrtec samples for as needed allergies and when I asked if I had to take them for a week for them to work, he said no, that's just what the drug companies say to sell more of them

My question is, why don't doctors know ANYTHING about other food intolerances BECAUSE OF gluten and Celiac? Not even Dr. Green mentioned it to me, so I asked him and he said, yeah, soy and dairy, usually doesn't go beyond that. And new doctors look at me and say, well, either you are eating gluten, or you're making this up! Okay, not literally, but that is what they imply. 'Well, if you have C.D. you should be better by now, and the rest of the problems must be your IBS.' Righttt, here we go again, putting everything they don't know and won't learn right into the catagory of 'IBS,' again!!!!!!! I feel like I've gone in a complete circle when they tell me that crap! I'm honestly NOT going to doctors ANYMORE, and I'm sorry, but I will find it hard to believe anything ANY DOCTOR ever tells me again. I've counted 22 doctors in the past 5 years over this, but guess who's been the real doctor?!?!? Little 'ol me, and of course my team at celiac.com! I even had to DEMAND they test me for Celiac! Ahy yai yai!!!!!! I'm tired!

UNBELIEVABLE! That's like the dr. who said, when I asked why my son's blood sugars rose so high at 10 am, said "Why do you check him at 10 am?! Huh?
I had to give my dr. the info I got online about celiac. He looked at it briefly and then, practically in the next breath asked me if I was depressed and not sleeping! (This dr. was the one I ranted about in the "Doctor Vent Thread)
You are SO right to be peed about this. It is such insanity, but we are the ones who are made out to be the "hypochondriacs" . I am really peed on your behalf as well. Unfortunately, his actions may make your mom doubt herself and her symptoms, which happened to me. That kind of self-doubt and insecurity nearly drove me nuts. I still get teary thinking about how bad the drs. and others made me feel. It has honestly left me so emotionally drained that I am still in a "wimpy state of mind" . I am sure many of you can relate. Thank God we have each other here. Good luck finding a good dr. for her.
Edit: I meant your sister, not your mom, may doubt her own symptoms because of the clueless dr. -

i don't mind a doctor not knowing info nearly as much if he/she says, "i really don't know much about this." it's when they make a point blank statement as fact, and me, only a high school graduate, knows differently. we go to church with a doctor (not our family's doctor) and he told me that he tests for celiac so rarely that he really doesn't know much about it or the tests-------at least he is honest!!
christine

OMFG!!!!! I'M FURIOUS WITH YOU!!!!

whadda freakin maroon...

I hope your mom is listening to YOU and not this idiotic Dr...
PUHLEEZ!!!!!!!

See if you can't get the phone number from your mom for this Dr. and we'll all call and give the Dr. an "eduMA cation"...

Wait! Why are your furious with me Nisla....because I didn't post the docs name/#? I don't even know her last name or her practice name plus here is the main problem. This idiot pcp is my Mother's close friends' daughter. So it's a very awkward situation and I'm washing my hands of the whole thing. How many times can you tell your family members that not one doc in their town knows anything about Celiac? I'm tired of repeating myself so that now I question the IQ of all of them. It's getting embarrassing and I'm over it. If anyone wants help with Celiac testing advice, gluten free diet help and such I'm here for them but other than that I'm tired of beating my head against a brick wall. This is just beyond ridiculous on so many levels now.

NO!!!!! OMG!!! not furious WITH or AT you but in agreeance WITH you... does that make sense??? Gosh that didn't come out at all the way I intended it to! YIKES!!! I should've proof read my post! I'm sooooooooo sorry!!!!!!!!

Nisla - no worries....I knew you weren't really upset with me but were like me so aggravated you couldn't type striaght! Ha ha! I was like that this morning on the phone....in total disbelief....then I hung up and got so mad I could not see straight!

I'm still soooo embarrassed! You are right! I was so po'd at the idiotic things that Dr.s say that I couldn't type straight! thanks for being so understanding!

Well, I spoke with my mom today and we got talking about the fact that she shares a lot of my neuropathy symptoms. She said--well, the tests were negative, so that's that. After a little more conversation, I get confused--I ask her if she happens to have the test results handy. A couple minutes later, while I talked to my dad , she reads the results--and they did only ONE test. Not the whole panel. I had clearly copied the panel and sent it to her to give to her doctor who admitted he was not familiar with Celiac. She and her GP got a script from a GI for the blood test--and it was the GI who ordered the incomplete test. Now, my mom is not interested in any further testing. Burying her head in the sand, as it were. Mad at doctors--now that's an understatement. Tiffany--I'm right there with you banging my head against that brick wall!

I might add thet I also copied the NIH confrence on Celiac report for her to give to her Doctor--looks like he didn't read it

I worked for years in the health care 'industry' and have relatives currently active in this area. It only grows worse. The decline has been driven by many things: doctors educated to treat rather than to diagnose and seek causes; a big PHARma that pushes pills for profit and encourages those same half educated doctors to do likewise; insurance companies whose polices encourage doctors to take more patients and give them less time; a Medicare, Medicaid problem that is only now getting more broken than it was before - spending huge amounts of money that drive up the cause of health care. Medicare, Medicaid do not pay for many preventative tests and procedures. When the patient declines into serious illness, then pass the pills.

In the past fifteen years I have been forced into an aggressive approach to my own health. Every test I have had in that time - excepting those ordered in an ER and some neurological tests - were requested by me. Consequently I know more than I would have known otherwise but still have some areas of pursuit to find exactly what the problem is. I know more about what it isn't. However doctors have totally failed me and I have become my own physician. Not appreciated by my current GP who recently wrote a referral (at my request) that included the line: "this is a complicated lady". She didn't say I had a complicated medical profile. Her remark would almost certainly be interpreted to mean - this is a difficult lady.

The internet provides a great deal of resources even for those without medical background. Everyone needs to become aware of information related to their own health. Learn to ask the right questions, to request the right tests, etc. There are plenty of people on this forum that can help if you get stuck understanding the medical jargon. Claire

Well of course they didn't order the whole panel, after all if they actually diagnosed the all the celiacs in the country they wouldn't have all the millions of dollars we throw to them before diagnosis. Not only that but if we do get an endo and there are changes if the villi isn't totally destroyed most of the time we are told we just have GERD, or IBS (doctor talk for I Be Stupid), just keep taking the meds, most of which are filled with gluten, and come back in a couple years for another scope. Keep those wallets open. So much pain, so many lost lives, so much money for them.

Patti - I'm so upset about your Mother's doc as well. At least Mother's pcp asked what tests to order, made copies of the info I sent down there and ran the whole panel. Only one of my Mother's test came back positive for Celiac, just like my test. Tell your Mother this and then tell her my biopsy showed significant damaged villi and classic Celiac sprue damage. I'm sick to death of all these doctors being such knuckleheads....did you see that?...I'm being nice.

I'm seriously considering making an appt. with my mom's PCP under the guise of becoming a new patient with her, so that I can tell her all about Celiac and the genetic factor, and that I suspect my mom and my sister have it as well. I know she won't be able to talk to me about my mom's care, but just maybe a lightbulb will go off in her head and she will suggest that my mom get tested... Is this a bad idea? Am I meddling? I am just so sick and tired of hearing my mom complain about her arthritis and IBS and heartburn all the while watching her make loaves and loaves of sourdough bread every week. I've tried putting the ball in my mom's hands, but she won't run with it. She's in denial, doesn't want to change her diet. The funny thing is, about a year or two before my dx, my mom was on the Atkins diet and lost a ton of weight and felt healthier than she had in years, that is until she started adding gluten back into her diet, now she's gained all the weight that she lost back. So frustrating.

My Mums GP said that she didn't have any gluten problems, I KNOW she has. I also printed out the tests needed, her GP did none at all, said there was no point. Her generation were taught never to question the doctor so end of story. Following advice here about obtaining written test results I have found that when the receptionist read out 'normal' to me, some previous results were not even in the reference ranges, let alone boderline.

95% of Docs in the UK are just as cluless as in the US about coeliac. A well informed patient is not respected at all. One consultant actually wrote to my doctor saying that I wanted a thyroid test again because I had gained weight on amytriptyline (read lazy vain female who can't stick to a diet) for the fibro never even mentioned that I had pointed out that thyroid symptoms are virtually the same as fibro....and should have been ruled out years ago, and that amtp is linked to 30-50lbs weight gain in numerious studies on side effects!

Anything printed off the Internet by an informed patient is seen as being the 2006 equivilent of 'Snake Oil' and of no possible relevance to the 'medicate the symptoms ignore the cause' ethos of western medicine. In fact as soon as the very word internet is mentioned their eyes glaze over. I'v only met ONE young doctor who said she had looked something up on the Internet for me, I nearly died! I agree that 5 mins on google would teach them more about gluten than medical school.

I can't make any member of my family argue with a Doctor and insist on testing.

Its good to rant!

Nisla - I don't know what to tell you but one of my closest friends in CA told me her Mother died of stomach cancer...I thought it was breast but that was after it spread from stomach to throat to breasts. The woman was dead at 67. I think your idea is worth a try and could prolong your Mom's life but don't be surprised if the pcp doesn't get on board....my Mother's pcp told her Celiac is really rare so I probably didn't have it, that was of course before my biopsy...anyway, I think you have to fight to even get tested correctly for Celiac so if your Mom wants to live in denial, her doc will probably be fine with that. It's just so sad and disturbing. If I was a doc that only knew how to put a band-aid on people instead of actually helping them....well I couldn't sleep at night, that's for sure!

Gotta get over to Marietta for a meeting. And in this lovely weather - not!

I know Donna--your point is well taken about how your mom would never question a doctor. After thinking about this (and fuming) last night, I really think that my mom's doctor did the one test because he knows that my mom will never question what he says. She is a very compliant patient--will do or take anything she is told to by him. Last year, she could have died from complications of the Coumidin that he had her on--and it turned out she didn't even need to be on such a potent drug. That was discovered while she was in intensive care for 2 days! But even though it was causing such problems, she dutifully took it every day until he ALLOWED her to go off of it. Boggles the mind. Since I gave her the test info--I'm sure he did a 'token' test to appease me--and get me off her case, and his, so to speak.

Nini--I think your plan is worth a try! It's not meddling--you're just trying to get a point across to the thick-headed doctor. It's just sad that such lengths would be necessary.

Tiffany--Thanks, I knew you'd understand

My new doctor is from South Africa. He told me what I told him about the crap from other doctors and my having to force them to do a skin biopsy on my dermatitis herpetiformis did not surprise him. He said that North American doctors are not well trained, the drug companies dictate everything because the government gets a big kickback from them. He was upset at the fact that four specialists refused to see me about my thyroid when I had obvious nodules and that I was choking, that I had suffered previously from the bad pernicious anemia with no real answers and that they did not really want to check out celiac disease and did the test wrong in the first place. He hates our system and their pandering to drug companies. He feels the same thing as many of us do why doctors in North America won't pay attention to celiac disease is because they can't feed you pills for it.He said if his family didn't like it here so much he would go back to South Africa.

I just thought stupid doctors was a Canadian thing but after hearing all of you in the US I know it is an epidemic in North Americal. It is too bad everyone has had to suffer and others are still suffering because doctors don't care and are too stupid to care.

Yea Rusla--we're all in the same boat on this one. Great news that you found a knowledgeable doctor--hang on to that one

Even the younger generation are sold on 'dcotor knows best' and will not be proactive in their own behalf. My daughter told me she thought it was 'embarrasing' that I would presume to tell a doctor what tests I wanted. If I needed a specific test the doctor would order it - that I was being rude and arrogant.

This daughter's health issues are far more critical than mine! Obesity, high blood pressure, fibromyalgia, silent migraines, restless leg syndrome and multiple food intolerances and chronic depression. She just takes the medications and hopes for the best.

Very frustrating for me - and I guess likewise I am a frustration to her. Claire

the thing that holds me back from following through on this plan is that I would have to pay a copay to see a Dr. that I really don't have any intention of becoming a patient of. I am happy with my new PCP. She's from India and is very knowledgeable about Celiac and autoimmune disorders. She doesn't just write a prescription and leave the room, she talks to me first, finds out if I even want a prescription or if I'm just trying to figure out what is wrong so that I can treat it myself.

my mom and my sister AND my bil are all of the mentality that the Dr. knows best and they seriously wait to get permission from the Dr. before trying ANYTHING. It's like they can't think for themselves anymore. My bil has been in and out of hospitals as long as I've known him. He's had part of his intestines removed for diverticulosis, gall bladder removed... God knows how many other surgeries, currently having a bout of severe migraines... and will he consider changing his diet??? Guess. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Amen sister! My Mom's doctor is that way. I suggested that anti deppressants were not appropriate for my Mom because of her heart condition and the recent study that showed patients with cardiac problems died a lot more when they were taking AD's. She had no clue, absolutely no clue! She said, "Oh no. They're perfectly safe! We've been prescribing them for years." I suggested that my Mom might do well with fish oil supplements for inflammation and mood. She didn't know what they were. She thought I meant mineral oil. Wow! I couldn't believe how clueless this doctor was. Do these people read?

I hear ya! After being diagnosed I talked to my dad and told him to get tested. He said that his brother, my uncle, had been tested YEARS AGO and the doc said "yeah, you have it, but you can eat gluten, as long as you don't feel sick"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So, needless to say, he is SOOOOOO not gluten-free. I hate doctors. I need to put that in the "I Hate" thread.

This is an international scandal. What can we do about it? My doctor (in London) just told me that I dont have celiac disease as the bloods were neg and when I explained I can still have it (im SURE i have it, yadda yadda, gastroscopy next firday) he said 'Have you ever thought about having counselling?' I really wish i had said 'Have you ever thought about having training' but due to the foggyness im not as quick witted as i used to be.

We all need to fight this disgusting lack of regard for peoples health. Lord knows how many other people are suffering and dying because of these fools.