How Come It Took So Long To Diagnose Me?

[CeliacMe]

Doctors:

How come I was sick with symptoms for almost 15 years before a correct diagnosis? I had been to the doctor countless times and until my symptoms became extremely violent (projectile vomiting, severe diarrhea) I was treated like some sort of hypochondriac. Well maybe if you felt like total crap all the time with chronic fatigue, headaches, diarrhea and everything else, maybe you'd be a little bit of a hypochondriac too. I am so angry that my body has had to sustain all of this damage since going to the doctors and nothing was done. Finally a new doctor diagnosed me only because she was familiar with celiac. I went to a GI, I went to everyone, and everytime I felt shunned, like the doctors had something better to do and people who were really "sick" because apparently, I wasn't sick enough for them. I think that something should be done to educate these doctors about celiac because many of them dont screen for it and dont do anything, are they uneducated or incompetant?

What I do know is if doctors were more familiar with Celiac, my body wouldn't have had to go through the damaging processes caused by Celiac and my risk for cancers and osteoperosis would be much lower.

[debbiewil]

Tell me about it! I told my doctor 10 years ago that I got diarrha every time I ate pasta. I didn't test positive for a wheat allergy, so the doctor just dismissed it as all in my head. And I had low iron levels - borderline anemia. The doctor just told me to take iron tablets. So I was taking 3 a day, and still low iron. I told the doctor that I just wasn't absorbing it, and had to be some sort of malabsorption problem, and the doctor just dismissed it, and told me to go on the standard USDA diet with 6-12 servings of grains a day. Sigh! Which I very quickly found out just made everything worse. So I ignored the doctor and I started eating MY diet, which was mostly meat, vegetables and fruit. But I still ate a small amout of grain products. So after 10 years of getting worse (thyroid, arthritis, bone loss, fatigue, ataxia) I sat down with the internet and every medical book I could find, and figured it out myself. Thank goodness, I did cut down on the grain products. If I'd done what the doctor said and eaten the 6-12 servings of grains a day, I'd have been dead years ago.

[VydorScope]

Because doctors are human, and being human they have limitations. We for some reason execpt doctors to be perfect and know everything, but they dont. You need to reasearch all you can about your specific case yourself. My son who is little past two years old now would still be testing if I had not found out about celiac disease and learned about it my self and got him the right testing. Docs have way to much they need to know and consider, and missing somthing odvious or not is normal.

There are many great docs out there... but we also have to realize that there are many that are not and change docs as needed.

[Guest Viola]

It hasn't been that long since the disease was thought of as very rare and the medical schools only covered it with diagnostic specialists, which meant the GP didn't get any education on it at all and the gastric specialists only got a small introduction. So we really couldn't fault the doctors 20 years ago, or even 10 years ago. However ... the medical schools had better sit up and take notice now and start teaching it big time!

Just my thoughts

[pixiegirl]

Hey debbiewil, I'll one up you with that. I told my doctor for 12 years that I had the runs 10 times a day. It still took me 12 years to get a diagnoses! Its just not something that most doctors look for I guess. Crazy!

Susan

[CeliacMe]

that's exactly the point, when you do your own research because the doctors obviously cant figure it out- guess what?? you are labeled by the doctor as a "hypochondriac".

Because doctors are human, and being human they have limitations. We for some reason execpt doctors to be perfect and know everything, but they dont. You need to reasearch all you can about your specific case yourself. My son who is little past two years old now would still be testing if I had not found out about celiac disease and learned about it my self and got him the right testing. Docs have way to much they need to know and consider, and missing somthing odvious or not is normal.

There are many great docs out there... but we also have to realize that there are many that are not and change docs as needed.

<{POST_SNAPBACK}>

[Claire]

Tell me about it!

Thank goodness, I did cut down on the grain products. If I'd done what the doctor said and eaten the 6-12 servings of grains a day, I'd have been dead years ago.

<{POST_SNAPBACK}>

Your story and mine quite alike except my symptoms were different and it took, for me, a lot longer than ten years.

I got half way there in 1990 when I was diagnosed with the Type II, Delayed Food Reactions - to a whole lot of food but to all grains except rice and oats. It was 1990 - no mention of gluten. So I cut out bread and most everything with flour in it. That was enough to greatly reduce symptoms - not enough to prevent the damage the gluten I was getting was doing to my body. The most severe damage is to the brain - causing gait disturbance and balance problems but there are other issues too. I do find my way via research. Doctors not just no help but blatantly wrong in the things they told me. It's tough/ Claire

[drewsant]

I think too, that the symptoms are so varied and sometimes vague, that it can be any number of things. Diarrhea, fatigue, foggy brain, can be symptoms of dozens of things, and it's a process of elimination. I read through a list of symptoms and sat there thinking, "how do they know these symptoms are specific to Celiac? It could be anything". Believe me, I'm disabled, and have a lot of health issues. Doctors start with the most obvious, then work their way down. And as someone said, Celiac was considered very rare until just fairly recently, so it wasn't considered necessary to test for it. I found out about it about 8 years ago, mentioned it to a new doctor, he blew me off, saying it was rare, so I dropped it. Then 8 years later a nurse practitioner mentions it to me that I might have it.

I am beginning to think I don't have celiac, but food allergies. One of which is wheat, which would explain why I responded to the gluten-free diet, when I was just eating fruits and vegetables for 3 weeks. Then I started adding other things that it turns out I'm allergic to, and the diarrhea started again. I was thinking the other day that it is really hard to pin down a lot of illnesses, because there can be dozens of reasons for any particular symptom. I mean, my diarrhea could be caused by Celiac, medication I'm taking, food allergies, stress, seasonal allergies, irritable bowel syndrome, depression, lactose intolerance, or even my disability can predispose me to have it because of nerve damage. I don't really know. I just have to explore every avenue to see what works and what doesn't.

It's amazing that doctors correctly diagnose as many things as they do, really.

[debbiewil]

What I hate are the doctors that absolutely refuse to listen to you and are sure that they know everything.

Case in point - many, many years ago I spent a week visiting my family. My youngest brother had just been diagnosed with mono (and I have to admit I spent much of the week teasing him and giving him a hard time about it. ) Well, a week or so after I got back home, I started feeling really tired, and some respiratory symptoms, etc. Thought it was a cold, but when it didn't get any better after another week and I was sleeping (or wanting to) 10-12 hours a day, I figured I had caught my brother's mono when I was home, and that he'd now have the chance to tease me. Anyway, I called and made an appointment with the doctor, told the doctor everything and the doctor FLATLY REFUSED to test for mono. I was over 30 and in his experience no one over 30 ever got mono so I couldn't possibly have it. He considered me a hypocondriac because I complained of being tired and thought that I just needed to get out and exercise more and eat right and that would take care of it!!! Sorry, but exercising more with mono is not the world's best idea. And if you look in the medical texts, you'll find that mono can hit anyone at any age. Yes, it's far more common in younger people, but people in their 70's and 80's have had it. And a doctor who REFUSES to test for a contaigous disease that you know you've been exposed to - well, I really should have written to the medical board about him. Anyway, needless to say I never went back to that doctor.

Debbie

[CeliacMe]

Exactly! Everytime you are sick and the doctor doesn't seem to have an answer or care or even seem to be listening, the second you are a little bit pushy- guess what? the "hypochondriac" alarm goes off in their little heads and they tell you nothing is wrong with you or "it's probably just this or that" That's doctor speak for "I don't care, stop complaining." OR IBS, I love IBS. How can that be a diagnosis? They give it a fancy name so it sounds like a disease. IBS - "you have problems with diarrhea and/or constipation and I can't figure out why, and I don't care to test or inquire further, so I am diagnosing you with this." "By the way your 15 minutes is up!." It's like fast food, bing! your "diagnosis will be ready in 15 minutes!"

I have lost SO much respect for the medical profession it isn't even funny. My symptoms first started when I was 6, everytime I drank milk, I got diarrhea. My aunt is lactose intolerant (I believe she's Celiac too) so I figured out that I thought I had what she had. So i told my mom, she said "no you don't", I told the doctor and he made a face and tole me that I probably had something else if I had diarrhea. I hate them so much! That's it!- I am going to quiz my doctors from now on, like a job interview on the first visit I am going to ask them a series of questions in order to be my doctor. And if nobody meets my standards, then I'll go without a doctor, afterall I did suffer for 15 years and cause significant damage to my colon, among other things, all the while seeing doctors. So, I don't really see the difference.

[CeliacMe]

People have this attitude about doctors that they are smart because they work on people for a living, they are supposed to "fix" us. Your assume when you go to the doctor, any doctor, that they know what they are doing and want to help.

My point is that doctors if they are any part of what society views them as, than it shouldn't take a dozen physicians (GIs, GPs, and ER docs) to figure out over the course of 15 years what is wrong with anyone and above all, not take them seriously until they are vomiting and diarrhea in your office missing their visit because they are so damn sick.

My point is that doctors are supposed to be free thinking, smart, savvy and above all- caring. The only doctor that actually seemed to care is the one that spent the time with me, believed me and listened. She is the one who ran the right test on the first visit. Doctors don't listen. It has nothing to do with what their medical school taught, that attitude irks me to no end. I don't give a rat's rear end what their hundred year old anatomy professor thought about anything, what do they think??? They have a patient who is sick, they've run all of the "standard" tests, and can't figure out what is wrong. So what do they do? They tell me that I have IBS. They go home and I continue to be sick. Sicker and Sicker everyday becoming more of a zombie than I was the day before. But that is okay because they can go home and forget about it. They aren't the least bit inquisitive, wanting to find the last part of the puzzle, doing research, trying to figure out some kind of a suitable answer or solution to help their patient who is wasting away, literally dying more and more after every visit.

Why don't they listen? I know exactly why. Did you know the average doctors office allots 15-20 minutes per patient so they can see enough patients to make their daily quota? BOTTOM LINE- that's when they care.

Because doctors are human, and being human they have limitations. We for some reason execpt doctors to be perfect and know everything, but they dont. You need to reasearch all you can about your specific case yourself. My son who is little past two years old now would still be testing if I had not found out about celiac disease and learned about it my self and got him the right testing. Docs have way to much they need to know and consider, and missing somthing odvious or not is normal.

There are many great docs out there... but we also have to realize that there are many that are not and change docs as needed.

<{POST_SNAPBACK}>

[Guest nini]

shoot... my symptoms started pretty much right after I was born... I wasn't dx until I was 34. My primary care Dr. initially thought I was crazy and sent me to a psychiatrist (who in turn asked me why on earth was I there) but I just kept showing up at his office especially when I was vomiting non stop and had explosive diarrhea. I would literally be throwing up in the sink in their office at least once or twice a week for several months before they sent me to the GI that dx me with Celiac.

[debmidge]

I don't cut doctors any slack on this one.....

A gastro should be working WITH the patient instead of AGAINST him. What I mean by that is that the gastro should do the necessary tests to eliminate the obvious health conditions; then when those tests don't show anything the gastro should consider if it's something the patient is consuming. In my husband's case, he was misdiagnosed for 27 years and we kept changing gastros because we got dead ends. The gastro group he saw in 1994 dismissed him as "needed a psychiatrist", AFTER I said to the gastro: " It seems that my husband is not absorbing his fats, calories or nutrients; like it's passing thru him undigested." The response I got from this genius was a haughty: "It's nothing like that at all!" No if he wasn't so self righteous, he would have jumped at what I said and made a study of what causes malabsorption: celiac.

So you see, a doctor is only as good as his training, but there comes a point when you go to 5 gastros, not to mention the number of internists and none of them wants anymore to do with a patient who is doing poorly. So they label the patient with the misdiagnosis and feel that they've done their job and dismiss you from their office. By the way, "genius" didn't even run endoscopy nor colonoscopy and treated us as if we were kooks and a bother. I cried in his office - cried over how cruel he was behaving and cold and mean. And my husband was the patient -imagine how he felt.

Doctors here do not want the challenge of something they don't know.

It's "blame the victim" mentality.

Furthermore, if it's their occupation, it's not too much information to know. A gastro should know gastro conditions - we're not asking him to know brain diseases, just gastro diseases. I have a Mayo Clinic medical reference book that dates back to 1990 and it mentions Celiac Sprue in there. If I, a layperson, can find celaic as a cause of malabsorption, then someone who is a gastro can too.

I don't buy the excuses for the doctors

[pixiegirl]

I so agree with the post above and I too have lost a lot of respect for the medical profession, no one seems to care any more. It took me 11 years to get diagnosed and I had to change doctors to get it done. I was labeled as a hypocondriac by my former doctor which really annoyed me because I've not had tons of things wrong with me, as a matter of fact over the past 30 years all my complaints were limited to only GI things... wow how hard is it to figure out after all that time that some is wrong with my GI system??

In my job I'm expected to know everything about what I do.... and I try too, I spend hours every single day doing research and I certainly take suggestions from clients... I'm a stockbroker. Why can't my doctor know a whole bunch about what he does and take suggestions from me?

Susan

[VydorScope]

In my job I'm expected to know everything about what I do.... and I try too, I spend hours every single day doing research and I certainly take suggestions from clients... I'm a stockbroker.  Why can't my doctor know a whole bunch about what he does and take suggestions from me?

Susan

<{POST_SNAPBACK}>

Susan, in your job are they not good stockbrokers and bad ones? Are there not stockbrokers that do not care at all about thier client, just thier cut of the commission? Are they not complete total jerks in your profession? Of course there is, we all have them in all our professions.

For some reason we expect that doctors will be imune from that and we expect them to all be godly perfect... and when we find out they are not, we get upset and tend to blame all docs.

I have had my share of bad doctors, we all have, you just fire them and move on. Find you a good doc, and stick with him/her as long as you can. Just like if you were my stock borker and I felt you were doing a good job I wuld stick with you.

If you dont like you doctor, find a new one. Its a PITA to hunt out a good doctor, but its definly worth it. For example my sons peditrtian is AWSOME, his medical beliefs are very much in line with ours. For example we told him that the GI doc did not want to call it Celiac with out some more tests, but told him the results of the diet change and he siad, "I realy do not care what you want to call it, if the gluten-free diet works, do it." Later when he reveid the GI's test results he agree with me that it was celiac disease.

I can tell stores about bad docs to.. but you hear enough of them

My point is, expect there to be Good, medicore and bad docs. Hunt out a good one and stick with him/her. Do not let the bad ones keep you down!

[floridanative]

This is just my own rant about bad doctors so don't read on if you're not interested.

As long as I've been completely healthy, doctors have been great to me. Sinus or upper resp. infection every other year, anti-biotics to treat it and that was that. Then four years ago I had walking phenumonia. Obviously you don't really feel sick when you have it, hence the name. After almost fainting in yoga class and having to sit down in the middle of it, I went to the doc to find out what was wrong. He said he didn't think anything was wrong but because I mentioned it was hard for me to take a deep breath he would do a chest x-ray if I had time. He also mentioned he didn't think it would show anything at all. So I got the x-ray (took all of 15 minutes) and I got to hear the doctor in the hall when he threw up the film. He exclaimed something to the effect of 'I'll be damned she's got phenomonia'. He came in the exam room and told me I was contagious and would have ended up in the hospital in a couple more days had I not come in. That was my first clue that you can't always trust a doctor's instincts.

Next problem was last year when I presented with horrible neck pain - could not turn my head to the right. Doc says I have a muscle spasm, give me pain meds and that was it. Pain gets worse in two day so now I can't even drive myself back to the doctor - now I have a rash on ONE side of my head, face, ear. See another doc at same practice who knows me but she is very young and 8 months pregnant (matters later). So she does an x-ray and says I look fine and my rash is hives from allergic reaction to pain meds. I ask 'is there anything that causes pain and presents with a rash only on one side of the body' and she says no. She gives me more pain meds and Ambien for sleeping. Okay I let another 8 days go by. I work from home so I really don't work excpept to check my e-mail and do only what is needed to keep my business going. However, since I'm taking the highly addictive sleeping pill, Ambien, I actually get about 8 sleep hours a night. But I'm in unbearable pain the rest of the time. Finally on the third trip back to the doc (see owner of clinic this time) she really listens, goes out and consults with another doc there, comes back in and says 'I think you have shingles' though it usually presents in persons much older than you. I'm 40 at the time. She gives me pres. for Valtrex and that's that. More pain meds too but she doesn't realize that narcotics won't help because my condition had pregressed to something called postherpetic neuralgia. This happens when say, you don't get the Valtrex in a timely manner. So lucky for me I have a close friend who acutally had shingles before so she sends me to her Neurologist. He was by far the best doctor I've ever met. Sat with me taking lots of information down about what I told him for over an hour! One of the first questions is - did the pain make you feel suicidal at any time? That is how bad the pain for PN is. I told him no but I certainly didn't think God expected me to live like that for very long - either I'd die from it or I'd get better. Those were the only two options I felt were valid. He gave me the highly effective epilepsy drug called Neuronton which had recently been in the news due to off label use by manufac. But it was approved for my condition in 2002. It literally saved my life. In 8 weeks I was off it and now the only lingering sypmtom is I can never scratch my ear with a nail (only fingertip) or it may feel like I'm running an ice pick through it.

While all this is going on, my husband gets chicken pox (from me having shingles) and is out of work for two weeks. The doc who dx'd my condition told me I was not contagious which was completely wrong. It is also very dangerous to be around someone with shingles when you are pregnant - like the idiot second dr I saw. And also, she gave me 30 Ambien and I took 10 before the neuro doc told me to throw them out. I did not sleep again for a week as I was very addited to them already. I really did consider suing the practice but the insurance companies and doctors have way more money than I do so I finally let it go.

So now I really don't trust that doctors know all that much at all and feel that with that opinion, I won't put myself into a bad situation in the future. Like I've said many times, no one cares as much about my health as I do!

[debmidge]

Pixiegirl,

You are 1000% right....

Message for all:

Being a stockbroker and a doctor are 2 different things. More care is needed as a doctor. As a stockbroker, you are handling money; doctors handle sick people: between the two what profession is there more important to know your subject matter? medicine.

Like you Pixie, I am in the financial professional arena - I am an insurance professional specializing in business insurance; I must stay on top of my game in order to give my clients the best advice. That means a lot of continuing education.

If while doing my job I make a mistake thru neglignce, I will lose my job - again , I will lose my job and word of this will get around in my industry very, very quickly - people talk -- and no other insurance firm will take a risk on hiring me, unless I prove that I learned a lesson from it (?) maybe. But, I will lose my job.

And think of this: no one died or got sicker as a result of my negligence. But a mistake is taken very seriously.

My mistake can cause me and my boss to have to go to court. I could lose my insurance license if the mistake is found to be grievous enough, but I will lose my job. If I lose my license, my career is over. My employer might be sued and can be sued by a variety of entities that were affected by my mistake/negligence: clients, customers of my clients, insurance company, State Insurance Dept., stockholders, etc. And even if I am fired, I'll have to show up in court as a witness for the defense or maybe I am the defendant, if I did the act deliberately.

Q: Why then is money more important than health? Shouldn't we expect the same quality of care from doctors that we expect with our money?

In my business, this method is how losers/bad insurance professionals are weeded out.

Medical professional losers are not weeded out or if they are, it happens very rarely, so there will be bad doctors mixed in with good but the public has a right to know before going to that doctor what his/her record is.

Additionally we have the right to expect better than mediocre health care from that person who holds himself/herself out to be a specialist.

The doctor who runs his own practice will never fire himself if he is negligent and misdiagnoses someone. This is where the medical profession differs from other professions that are subject to outside scrutiny (yes, there's medical boards and sometimes doctors work in large practices where they are overseen, but all in all the boards and other physicans tend to protect each other when there's a situation of negligence).

Overall, I am unimpressed with doctors and my experience of misdiagnosis isn't limited to celiac. I've had a family member misdiagnosed with cancer. So I've had MORE than my fair share of incompetents.

Something has to be changed in this crummy system of ours.

I envision this:

Patient goes to doctor, a team of Diagnosticians take info, the Diagnositicians look for matches with other diseases and do some freewheeling of ideas and come up with their Diagnosis; then the Lead Diagnostician on this patient's case sits down with the specialists in the group who will take on this patient. They plan the tests needed and do the tests. The patient then returns and the specialist and Lead Diagnositician interpret the results and come up with a Plan of Action of how to treat this patient. Treatment gets implemented and patient has a scheduled follow ups and if treatment does not give the intended result the Diagnostiticians review their original specs and re-view the patients test results and symptoms again and come up with another conclusion with treatment. In this way, many brains are being utilized, many thoughts, no idea is considered stupid during the Diagnositican's matching and freewheeling, no one is subject to criticism, and the patient is allowed imput and their thoughts and feelings are considered. The specialist isn't on his/her own with this and he/she is getting imput from other professionals. It's a check and balance system. If the patient isn't improving, the "Team of Professionals" always go back to the drawing board and do not treat the patient as a pariah or make a further victim of the patient. In essence, they do not "turn" on the patient and his family.

[VydorScope]

Everyone some how has this idea that getting a doctor's degree makes you PERFECT. That a silly peice of paper some how magicly removes the human element of the equation and turns all doctors in 100% perfect clones of hte perfect person.

Reality is of course that the medical profession, as are all proffesions, is made up by humans. Humans are imperfect and vary highly in skill and careing. No piece of paper is going to change that, even with a fancy name like "diploma" or "degree".

There always has been, and always be a very large range in quailty, knowledge and skill amongs doctors, as with any proffession. To expect otherwise is just silly.

Remeber the only difference between you and your doctor is a peice of paper. For some reason people tend to put tremdous amount of faith in that piece of paper though...

If you have a bad doc, find a new one. Do not stick around expecting him/her to get magicly better.

[CeliacMe]

That's terrible! I've done that (been in the dr literally sick, in the bathroom with diarrhea and vomiting). That's when they started to think maybe I was telling the truth ("gee boss, I think she's really sick"). I HATE doctors. The vast majority of them are a bunch of egomaniacs with god complexes. The fact of the matter is what most of them aren't even good at their job- so I don't get what justifies this whole god thing if you are bad at something that you went to 8+ years of school for?

They are terrible. You are obviously sick. They are idiots. Chronic illness like that associated with Celiac isn't normal, the fact that these idiots just brush us off is ridiclous. Their primary resource for information is to listen to their patient and they cant even do that. I hate them.

shoot... my symptoms started pretty much right after I was born... I wasn't dx until I was 34. My primary care Dr. initially thought I was crazy and sent me to a psychiatrist (who in turn asked me why on earth was I there) but I just kept showing up at his office especially when I was vomiting non stop and had explosive diarrhea. I would literally be throwing up in the sink in their office at least once or twice a week for several months before they sent me to the GI that dx me with Celiac.

<{POST_SNAPBACK}>

[debmidge]

Many people with health plans are limited to the doctors they can see. Many plans do not allow you to see a Dr. outside your plan. I've noticed many plans have the same roster of doctors and those that are outside their plans are the better doctors.

Additionally, you should be able to know the doctor's history before you make the appointment. For many people, it's not possible to run from doctor to doctor to doctor month after month, year after year just to find one who is competetent. The medical industry is a "silent" industry - meaning it's not branded -- you never know what you're gonna get in a dr. That needs to be changed and the public should demand better. We should haven't to live with it and accept as such. Call me silly, but if a person holds themselves out as a "professional" they have to prove it. Do you know that in a court they hold this as the measure of negligence? If someone holds themselves out to be a "specialist/professional" then they must know their stuff - all of it. They will be held to a higher degree of responsibility in court. If this is the standard of court, why should it be any less for us? The range in quality will improve when we demand it by sharing malpractice information.

Yesterday I read a copy of Readers Digest June 2004 and read an article of the Worst Doctors in US. The medical boards covered up many greivous acts of negligence and allowed these doctors to practice continually. One had 78 cases of malpractice against him that his insurance company had to pay on. Malpractice negligence is different than other liability. The doctor has the right to tell his insurance company if he wants to settle right away or fight it. No other liability insurance has that option. The reason he would want to fight it is to perserve his good name. This Dr. lost 78 cases.

My husband went 27 year misdiagnosed and lost his health, his youth, his income, his zest for living; in those years we went thru several gastro specialists and many GPs so I think I know of what I speak and why. We DID do doctor "shopping" and we still lost out. So changing doctors doesn't automatically guarantee that you aren't getting a cookie cutter of your last doctors. I don't know what more we could have done to get the correct diagnosis.

[VydorScope]

Many people with health plans are limited to the doctors they can see. Many plans do not allow you to see a Dr. outside your plan. I've noticed many plans have the same roster of doctors and those that are outside their plans are the better doctors.

Okay , now here I compltely agree. The health ins indusrtry has killed all competiion in the medical indusrty and with out competion theres little incentive to excell. Hence why I am so strongly infavor of HSAs which bring competion back and start to allow the free market to reward excellent doctors and penelize the bad ones. Thats the only way this mess will be fixed.

[Rikki Tikki]

I think that the medical community doesn't know a lot about celiac. I hope this changes as more people receive a diagnosis. For me I had been to the doctor 10 years before and he had run some blood tests, said it showed a disease but that it was so rare he ddn't think I had it. I should of pursued it but totally believed in the medical profession, I did think them as god like. That was my error, many of them don't know what celiac is. So it was 10 years and I was very sick before it was diagnosed. The GI docotr left me with, "you will know more about celiac in a year that I ever will."

My mom was so ill, I thought she was dying, the doctor thought she was depressed, I asked he check her for ceilac, he said he didn't have much belief in it but agreed to do the blood test. Her blood work came back "off the charts." I do feel if I hadn't asked him to run the test she wouldn't be around, she was that ill. This was only a few weeks ago.

I don't really believe the doctors are incompetent, I just think they don't have the knowledge, and if they don't know they assume people are either nuts, depressed, stressed or whatever and that this goes for many diseases not just celiac.

I am just hopeful as more people are diagnosed they will demand a better selection of food in the store, restaurants etc.

[frenchiemama]

I think that the current system is just too accepting of bad doctors. Yes, doctors are human and yes, they do make mistakes. But currently I don't believe that there is any incentive for them to really *try*. They can get by with doing a half-assed job, so why try any harder?

Last night I had to take my mother to the ER. She has a list of neurological problems as long as my arm that NO ONE has ever been able to explain. Last night she had one very dilated pupil with a pain around her eye and temple (this is the second time this month that this has happened, the first time she also had a seizure). She has had a brainscan (EEG?) and there is a "slow" or abnormal spot in the exact area where the pain was.

So there we are in the ER, and after almost 2 HOURS the doctor finally comes in. After 30 seconds, I wanted to strangle the guy. He wasn't listening to her at all, he was repeatedly asking her the same questions over and over, he kept interupting her. Then she mentioned that she had been using *saline* eyedrops, and I could literally see the moment when he mentally checked out of the conversation. Why bother to think about it anymore? The problem was CLEARLY caused by those saline eyedrops. Because eyedrops can cause seizures and abnormal EEGs. He told her that she should go see an eyedoctor. (She sees an eyedoctor regularly, and has since she was a child).

I was so disgusted that I literally wanted to jump out of my chair and shake him until his retinas detached. I am going to be making a complaint to the hospital over this, but of course I'm sure that they will do nothing about it.

I was told that my dermatitis herpetiformis was caused by emotional distress and that I should see a therapist (because the antibiotics didn't cure it, and of course anything that can't be fixed by antibiotics is surely a mental problem).

As far as holding doctors to a higher standard goes, I think that they SHOULD be held to a higher standard. It's not like they just went to tech school and got a 2 year degree. By going to medical school and doing all the things necessary to become a doctor, they are agreeing to be held to a higher standard. People are supposed to be able to TRUST their doctors, and anyone who is not willing to put forth the effort shouldn't be allowed to have a medical license.

On a positive note, I have two fabulous doctors. Why are they so fabulous? Because they care and because they don't think that they know everything. They listen to me, they genuinely care how I am, and if they don't have an immediate answer for something they don't just blow me off with a "Well it's probably nothing to worry about" or some made-up diagnosis (like IBS). If they aren't sure about something, they will both LOOK IT UP. They will either go grab a book and look it up with me so that they can give me an exact answer, or they will look it up after I leave and get back to me about it.

Yet sadly, they are in the same office as people I wouldn't let mop up my blood if I was bleeding to death. That needs to change.

[debmidge]

Okay, let me put another wench in the works....every wrong diagnosis my husband got by gastros was when we were NOT in an HMO. We paid in full for all of this krapolla out of our own money - that's like an HSA. We went to what is considered the best medical group in our state. So, we went from doctor to doctor to doctor with an open wallet and wanted the correct diagnosis. So, either HMO or using your own money, the medical "system" stinks. How in heck can 5 gastro intestinal specialists and several GP's get this wrong? Did they all miss that day in school? I think not.

I disagree - the medical profession was corrupted BEFORE the health insurance industry got a hold of it. The health insurance industry HMO was a model of health practices which was developed by a doctor. A doctor made up the method of using a "gate keeper" (primary care) doctor and using specialists sparingly and only with a referral from the "gate keeper" . The health insurance industry implemented this system and as the saying goes "garbage in-garbage out" we got assembly line oriented doctors. Doctors hate HMOs as much as we do.

Over the past 27 years we were changing doctors, we weren't expecting the same doctor to "change magically" as been described. It was inexcusable to have 5 gastros with so little knowledge and desire to keep digging until they found a cause. It's unconscionable to turn sick people away just because you "don't know the answer." These doctors don't measure their success by how they diagnose and treat their patients, but by the value of their BMWs.

I am not talking just about celiac either. There are many GPs flying their practices by the seats of their pants. Many who refused to give referrals to their patients or even run tests. I was a victim of that kind of doctor. He would lose his bonus from the HMO if he sent me for a radioactive iodine uptake test; but I had a growth in my thryoid! Yes, I went to another GP, but even with an HMO it's costing me a co pay for every doctor I went to. This sounds like a bad joke but: How many co pays does it take to get a correct diagnosis? T

The second GP ordered the tests but at the expense of 2 co pays and 2 days off of work. Maybe the people who think that having some inept doctors in our midst is OK aren't inconvienced as much as the rest of us.

No, a medical degree doesn't make a person perfect...nothing does...but it tells the world that you hold yourself out to be a person with a particular knowledge, ability and DESIRE to promote cure. Unfortunately, the medical degree once received is known to expand the ego and expect to be worshipped and never questionned.

I have a question: How many here have doctors in their families? If so, what would this person say to people like us who have either been misdiagnosed or waited a long time to be properly diagnosed? What is a doctor's feedback to this?

[VydorScope]

We just go round and round and say the same things over and over in this thread. My final word on this will be simply that if you put your fiath in ANY HUMAN , you will be let down, reguardless of any degree or certification. Demand more of your doctor, and change if you unhappy with current docs. Do not blindy believe any doctor or internet poster, always study any possible diagnose your self. Become a specialist in it.