How Come It Took So Long To Diagnose Me?

[drewsant]

I think what is being lost in this thread that some people have alluded to is that doctors are not TAUGHT about celiac disease in med school, or they are taught that it is extremely rare, so not a likely culprit. Don't you think that if you are taught this, you will probably believe it? It's like my job, I work in telephone repair where we have to diagnose phone problems. We are given training and expected to do certain things, and that if something fits a certain scenario, then it is "X" and we do "Y" to fix it. Sometimes that doesn't fix it. Also, we sometimes find out later that something else should have been done, that we were not told, trained on, or whatever, but boy is the customer mad if we didn't know it. How can we be expected to know it if we weren't taught it? If we are not taught something, or something is missing from our training, it isn't always our fault if we "misdiagnose" a phone problem. We rely on our trainers to train us all the info we need to do our jobs.

My point is, that doctors have been told by their instructors in college either nothing or very little about celiac. So of course it is going to be misdiagnosed, until more and more people are diagnosed or bring it up to them. A lot of doctors also are reluctant to order a bunch of tests because they don't want to financially burden the patient, especially if they don't have great insurance that might not pay for it.

I also have a great doctor. He is a small town doctor in Iowa, and I feel lucky to have him. He will listen to me, and try to figure out what is wrong, and will get out his reference book to look things up--did this when I suddenly complained of migranes after going gluten-free. He learned something new that day, that extreme changes in diet can cause migranes. If he can't figure out what is going on, he doesn't hesitate to send me to a specialist or look it up. He wanted me to go to an allergist months ago, and I finally agreed a few weeks ago. Sometimes he wants to run so many tests that I say no, because 99.9 percent of the time, they come back negative, so I figure why bother with the same tests that they run every year? But he is very thorough. And I found out he is knowlegeable about Celiac, so I know there is at least one doctor that is keeping up on information.

I guess I've dealt with so many doctors since I was born, being disabled, that I know how to deal with them, I know what to tell them, how to tell them, and usually can get them to listen to me and take me seriously. I told my doc once that I feel like a hypochondriac because for a few years there, I was at his office every few weeks for one thing or another. He just kinda laughed, and said that everytime I come in , there is something wrong, and I'm just really in tune with my body.

[bex]

YOU ARE SO RIGHT!! Have you seen this show on Discovery Health called "Mystery Diagnosis"? It's all about people who have suffered with strange symptoms (or their children have) for years and all the doctors keep dismissing them or misdiagnosing it. What's sad is that if they can make an entire show out of it, you know there must be thousands of people out there, if not millions, who are going through the same thing. I started having celiac symptoms when I was 17, and I am now 35 and was just diagnosed a MONTH AGO! I had so many doctors, even GI doctors, tell me that I had IBS, that it was just stress, that it was just heartburn (causing gas??), everything in the book. And I just found out tonight that my cousin is celiac too, and he was just diagnosed in the last few months.

Anyway, I first started watching Mystery Diagnosis because there was a show about a child who had celiac. The father is perfect too, he says he just wanted to scream about it to everybody!! I feel the same way.

[jrom987]

I just had to respond to this topic! I have to mention my favorite doctor for many years. No, he didn't find my celiac disease even with my long list of ailments. What I want to say about him is that he listened to me. When my right foot swelled terribly, and all the specialists, tests, treatment plans failed, I searched the internet. I would bring all these diseases to my doctor and he would rule them out one by one or send me to another specialist. He thanked me for doing so much research because he said he didn't have time for it.

Then I changed jobs and got a new HMO doctor. He yelled at me and said I was too fat and if I wanted to continue having stomach problems. then keep eating. After leaving his office with my extremely low fat diet in hand, I cried and cried. Yes, I was 30 pounds overweight and yes, I lost it on that diet. Did I get better? No. I was so sick! My iron was so low and I made several trips to the emergency room with severe stomach cramping and you know the rest.

Finally, years later, I moved to AZ and my new doctor sent me to a hematologist because my iron levels remained so low. He was the one who found my illness a few wekes ago. God Bless those doctors who really listen!

[debmidge]

I don't think I've been saying the same thing in every thread...I am adding to the topic everytime I post. I feel I am adding to the conversation and also interjecting something I know through my life's experiences and that I too am a professional for a living. I don't think anyone else is complaining.

[Rikki Tikki]

Deb:

I don't think anyone here thinks you are complaining, we have this site so we can all listen, share and learn.

[VydorScope]

I don't think I've been saying the same thing in every thread...I am adding to the topic everytime I post.    I feel I am adding to the conversation and also interjecting something I know through my life's experiences and that I too am a professional for a living.  I don't think anyone else is complaining.

<{POST_SNAPBACK}>

Nothing negative ment by my post, thats why I added the smile so you could tell. It is just that its "all doctors are evil becuase mine is" is a very continous thread in this thread, and I am just baffled why ppl expect all doctors to be equal, and perfect. I do ont think anyone is upset with anyone in this thread, its been a calm discussion.

I for one think our peditritican is great, and he is the kind that researches things when he does not know about them that come up. I have delt with my share of bad doctors too, and could give horror stories, but I CHOOSE to stick with the good doctors I find, and choose to forget the bad doctors.

Even with a good doctor, I still research everything related to what ever diag is handed out, becuase I do not expect my doctors to be all knowning or perfect. I DO expect them to help me filter through research and use thier experence to help understand conditions.

I guess Im just more realistic, and less idealist when it comes to docs then most of you...

[tarnalberry]

I pretty much agree... doctors are what you make of them and what you tolerate out of them. You get rid of the bad ones, and spend a lot of effort trying to find the good ones. Sometimes, this can be pretty intimidating, but you push through that until you find one you can work with. (And just because a doctor is right for a friend, doesn't mean he/she'll be a good match for another person. I've learned that a lot of it is about personality matches as much as anything else.)

But, these days, we find ourselves having to take more responsibility for our own health - and informing ourselves about our own health. Part of that is because of the increase in knowledge about human systems, and it's next to impossible for one person to know enough to keep all his/her patients happy.

[debmidge]

I'm still very bothered by our experiences and I'm sure all can tell. It is a source of aggravation because my husband's health never came back, and he's a sickly shell of what he once was. During the years he was misdiagnosed there was no such thing as internet, there was no way to investigate stuff like today.

We were young and didn't question the doctors the way people do today.

We were met with road block after road block, changing doctors when we could, after we could scrape and save up the money, for you see, I was the only one working and on a secretary's salary it wasn't easy.

I gave up the hope of having children, owning my own home, vacationing, wearing nice clothes as my income went to our food, clothing, shelter and medical expenses -- and I was in my twenties still!

Sometimes it was so bad I thought we'd have to move in with his parents (they were living in a 2 bedroom apartment, not a house. That would have been awful cramming us all in like that, no freedom as you're in someone else's home.

So for me, the misdiagnoses bring me this horrible feeling of what I/we lost during those years and what we will never get back. It's very emotional for me. I do not have support of a family, my family felt my husband was faking it, so they turned from me when I married him. When we made an appointment for each gastro I literally prayed for God to give the new doctor the wisdom to make the correct diagnosis or find something that can be fixed and made him at least halfway well. I gave each doctor a clean slate and found they were just as bad as the last one. I didn't expect perfection, but these were the advice they gave us: he has to eat more, he's not eating enough, that's why his weight is low. or my favorite : he needs psychological help. I am not asking for the doctor to know everything, but to make the effort to go the extra mile before he calls it "Case Closed."

I cried throughout those years and it's funny, now I am to the point where I cannot cry anymore. I am now cynical and mistrusting, but I demand from the doctors I see now the same dedication I give to my own job. I found that life, however, is too short to allow loser doctors in our midst. My demands do not stem from an idealism, but from a firm belief that patients deserve better and that if we don't we are, all of us, the losers in this one.

I have to say that the gastro who did the final and correct diagnosis looked at the prior gastro's report (I had a copy) and rolled his eyes and said "He (the last doctor) didn't run endoscopy or colonoscopy?" He too was amazed at the last doctor's inefficiency.

I think 27 years is too long a time to go pushing through to find a good doctor. And we aren't getting rid of the bad ones until it's too late.

Apparently we must at this point agree to disagree.

[VydorScope]

Its cerntinly sounds like you ahd a very bad run of doctors, and I understand when you coming from. I am sorry you had to go through all that.

[debbiewil]

debmidge,

I am so sorry for all you went through. I too have found doctors to be very less than "professional' and it is getting worse every year. I also don't expect doctors to be perfect, but I do expect doctors to listen and to THINK, not just assume that they know everything and that if you don't respond to the drug they give you or that the ONE test they bother to do isn't positive, then you must be a hypochondriac and they aren't wasting any more time on you. In the last 15 years I've seen 12 doctors, with a move, company changing plans, etc. 1 doctor was actually pretty good. I still see him. 2 were adequate, they hadn't a clue, but were willing to listen and run a few tests. I would go back to them if necessary. The other 9 were completely useless. In and out of the office in a few minutes, refused to run tests asked for, refused to listen to anything I said, etc. That's not really good numbers - 3 out of 12, or 1/3 are worth being called doctor. That's the sad part. And I researched the doctors - the ones I went to are considered "good" doctors. I really would hate to see the ones that didn't get good recommendations. I think the medical profession is in a sad way. And the real problem is that there still ARE a few really good doctors out there, but they are being painted with the same brush as the bad ones. Eventually, none of them will get any respect, or trust, which will wind up hurting the patients AND the good doctors.

Debbie

[debmidge]

I wish there was a "Doctor" score card or a "Doctor" baseball card. That would be something. My husband's current gastro earns an "A". It was never my intentionn to lump good with bad...I just want to get rid of bad and say that majority are variations of bad.

[debmidge]

Again, let me be clear..this is just based on our experiences and out opinions.

[darlindeb25]

I know just how all of you feel. I probably have been gluten intolerant my whole life and celiac for a good share of it. My sister ate dirt at 6 yrs old--a symptom of vitamin deficiency--she was finally diagnosed at 43 yrs old--I was 46 then. I have never had an official diagnosis because I am the "hypocondriac, IBS, colitus, nervous stomach, too much stress" patient that you are all talking about. Well, I dont think I was ever called a hypocondriac! I also suffered panic attacks, was labeled agorophobic, anticipatory anxiety and given xanax to cope. The xanax kept me so dopey I couldnt cope at all with 5 kids. So I was told to take it as needed, just to relieve the panic--never tried to find the true reason for the panic, cause it was "all in my head!" Years down the road I was put on paxil. By the time I went gluten-free, I was taking 40 mg of paxil a day and still barely coping. As we all know, celiacs causes vitamin and mineral deficiencies and that is the chemical imbalance that was causing my panic.

Anyways--I moved to Long Island 10 months ago and last week found a doctor 2 miles away that I think will be a gift to me. He told me he will never ask me to do a gluten challenge, from everything I have told him he is 99% sure I am a celiac. He is testing for B12 levels, iron anemia, did an EKG and a Doppler test for neuropathy. He told me he doesnt know much about celiacs but is willing to learn as we go along and that he has 5 other celiac patients. I have seen many doctors and I really like this one. He spent quite a bit of time with me, he asked good questions and listened to my answers--that is almost unheard of. My test results should be in any day now. Deb

[ravenwoodglass]

  This sounds like a bad joke but:  How many co pays does it take to get a correct diagnosis?  T

<{POST_SNAPBACK}>

In my case about $17,000 (that's not a typo). That's a year folks. I was finally diagnosed by a savvy physical therapist who insisted I go to an allergist.

[cowgirl]

I feel better reading this thread.

However, I still am at a loss of where to go from here. I spent over 3 years SUFFERING with intermittant intestinal obstruction. I had all the tests that should have caught it. Ultrasound, CAT scan, X-rays the list goes on and on, and have seen alot of doctors including specialists who should have known what to look for. I even had a GI surgeon do a laproscopic abdominal exploration and guess what, he didnt even realize my intestines were malrotated! He did tell me my 'intestines were ugly" but no mention of any funtional problem!

and finally I questioned the upper GI results and demanded to know why my intestines were not in my abdomen like all the pictures I had seen of normal intestines.? At this point they said I did have 'malrotated intestines" but that I had had them since birth and that could'nt be causing my problem (after all I just turned 40). This was the answer I recieved from 8 different specialists. Eventually, I found a surgeon at the Mayo Clinic that did agree with me that I needed the rotation corrected, and when she got in there she found 4 kinks and what she called a 'caccoon" any one of which could have killed me! I am glad I eventually found her, but I did have to file bankrupsey to cover all of the medical bills.

After the surgery, my symptoms returned, nowhere near as bad or as often, but none the less they certainly effect my life to the point that I spend all day, everyday tring to figure out how to stop being sick, and to feel better.

I just went to a GI who actually advises a Celiac group about 2 hours from where I live. He had this attitude like "how dare you go on the gluten-free diet without being properly diagnosised" He said there wasen't much he could do for me except run a Celiac gene test (but that would only prove if I could'nt have it). He thinks that it is probably IBS like I have been diagnosised with I don't know how may times and wants me to try Zelnorm again. Besides missing a days work to drive to the appointment, he wants me to use a medicine I had a very bad reaction to last time (4 hours of violent D, with aching pains thru out my body for over 12 hours) that I will have to spend $47.50 for the co-pay for.

I had originally gone to see him because of neurological symptoms that I have read on this board can be related to Celiac, but good ol doc assured me that Celiac does not have any relationship with neurological symptoms and that there is no way to even know if I am Celiac without going back on gluten (which I refuse to do), so where does that leave me?

I am so sick and tired of being sick. Even this guy, supposedly a specialist with Celiac experience seamed to not care how I felt, or what I have gone thru, he just acted upset because he would not be able to collect the $$$$ for all the appointments it would take to properly diagnosis me.

I don't know what to do. I have pretty much given up!

I do plan to attend the Celiac support group meeting in about 2 weeks....but until then, I guess I just try to keep taking one day at a time. Too sick to do much else! Sorry to go on and on, but I am on the verge of tears (yet again)!

[gabby]

I'll reserve my opinion on doctors and the medical community (although I'll tell you it took nearly 15 years to get diagnosed).

I think the biggest problem of all is awareness. I had never heard of celiac disease until I got my diagnosis. Never heard of it, never read about it, never encountered it. And I am an information junkie.

Even today, pretty much everyone I encounter (friends, family, waiters, lawyers, dentists, etc) have never heard of celiac disease or know very little about it.

So we need to raise awareness. We need to be able to bring a copy of Time magazine with a cover story on wheat problems and celiac disease into the doctor's office.

We need a celebrity with celiac disease or a celebrity with a child who has celiac disease to get on Oprah and make this information very mainstream.

Hmmm, Oprah......now that sounds like a good idea!

[nccharm1972]

Hi...I'm new here. I just signed up for this forum today. I'm so sick...and the doctors can't seem to figure out what is wrong with me!! I've been sick for almost 7 years!!! My symptoms include severe diarrhea, migraine headaches, stomach pains, achy joints and muscles, nausea, acne and a variety of other things! No doctor can seem to figure out what is REALLY wrong with me!

After 2 years of fighting with an upset stomach, I went to a family physician. First I had a flexible sigmoidoscopy done...with NO anesthesia or painkillers I might add...and the doctor found nothing....told me I had irritable bowel syndrome and to accept it and move on. Gave me some kind of pills to take every day to help with the diarrhea. After another year that was still going on, so I went to a multitude of other doctors for second opinions.

I did end up having gall stones and my gall bladder was removed in August of 2001. All the doctors seemed to think that would make it all better. I wasn't having the excessive sharp pains caused by the gall stones anymore, but everything else was the same.

Then I went to a gastroenterologists in February of 2002. After providing a stool sample for analysis, he determined that I had an excessive amount of yeast in my stool. He gave me 10 days of Diflucan and for about 6 months after that, I did great. Felt better and everything. But slowly it all came back....

I got married in December of 2002 and my husband and I wanted to start trying right away to have a baby. After a year with no luck I began talking to my ob/gyn about it. I took prescription after prescription of fertility drugs...still no pregnancy. She determined that I wasn't ovulating, so there were no eggs to fertilize. Well, then they felt that my upset stomach was due to Insulin Resistance and they placed me on a low carb diet, which meant I couldn't have any fruit (which I love). I would be on and off the diet, but my stomach problem wasn't going away.

Then she put me on Glucaphage, which is a diabetes medication, in order to treat the Insulin Resistance. I've been on that now for almost 3 months. My stomach problems are now worse than ever. And she keeps putting it off as a side effect of the Glucaphage, but deep down, I know better.

I can't go anywhere anymore. I go to the bathroom between 5 and 10 times a day...every day. I have stomach pains, headaches, I'm exhausted, I'm overweight even though I don't eat that much and what I do eat comes RIGHT back out, my muscles and joints ache. I'm about to give up and just die ya know?! I actually feel THAT bad! Plus, I want a baby so bad and we've been trying for 35 months now without success and know one can tell me why. I just want to feel like ME again!

Does anyone have any thoughts on my story??? Or suggestions of where I can get more information on Celiac Disease and finding a doctor in my area that will know how to test for it and diagnose it....I need to know if this is really my problem!?

Thanks for any help anyone can offer to me, as I am VERY frustrated right now with my health. Feel free to email me as well at nccharm1972@earthlink.net

Thank You All!!!

Linda

[nikki-uk]

It certainately sounds like all your symptoms could be caused by coeliac disease.

You need to get that blood test.

As I'm in UK I can't recommend a doc for your area,but I'm sure someone will be on who can.

BTW did your Ob/Gyn diagnose Polycystic Ovaries?

If so-have you had an ultrasound of your ovaries?

Good Luck

[CeliacMe]

what the heck is a gluten challenge? I don't know! I'm new to this!

[Rachel--24]

what the heck is a gluten challenge?  I don't know!  I'm new to this!

<{POST_SNAPBACK}>

A gluten challenge is when you've been off gluten for some period of time and then reintroduce it and eat it for the purpose of testing or for self-diagnosis.

[CeliacMe]

That is the STUPIDEST THING I'VE EVER HEARD! (not really, I've been to many doctors, I am sure that I've heard much worse) Do these doctors work for the Wheat Farmers Association or something? Why is eating gluten so important to them? They are so reluctant to reccomend a gluten free diet, like it's bad for us or something!

Hey- I have more questioins.... if anyone would like to answer.....

Is it okay to eat ketchup? Hunt's site says theirs isn't gluten-free and McDonalds and Wendy's both list it as a gluten-free item. I haven't been eating it because of the vinegar thing, is there a brand that I can eat?

A gluten challenge is when you've been off gluten for some period of time and then reintroduce it and eat it for the purpose of testing or for self-diagnosis.

<{POST_SNAPBACK}>

[floridanative]

Hmmm, Oprah......now that sounds like a good idea!

<{POST_SNAPBACK}>

[CeliacMe]

I have been getting this weird cramping in my abdominal region and it feels like my stomoch falls asleep (pins and needles). Also, I look very bloated and have not had a normal period in 3 months. Were any of these symptoms of the "kinks"? I keep thinking something isn't right, but dont want to go to the doctor. I hate going there.

I feel better reading this thread.

However, I still am at a loss of where to go from here. I spent over 3 years SUFFERING with intermittant intestinal obstruction. I had all the tests that should have caught it. Ultrasound, CAT scan, X-rays the list goes on and on, and have seen alot of doctors including specialists who should have known what to look for.  I even had a GI surgeon do a laproscopic abdominal exploration and guess what, he didnt even realize my intestines were malrotated! He did tell me my 'intestines were ugly" but no mention of any funtional problem!

and finally I questioned the upper GI results and demanded to know why my intestines were not in my abdomen like all the pictures I had seen of normal intestines.?  At this point they said I did have 'malrotated intestines" but that I had had them since birth and that could'nt be causing my problem (after all I just turned 40). This was the answer I recieved from 8 different specialists. Eventually, I found a surgeon at the Mayo Clinic that did agree with me that I needed the rotation corrected, and when she got in there she found 4 kinks and what she called a 'caccoon" any one of which could have killed me!  I am glad I eventually found her, but I did have to file bankrupsey to cover all of the medical bills.

After the surgery, my symptoms returned, nowhere near as bad or as often, but none the less they certainly effect my life to the point that I spend all day, everyday tring to figure out how to stop being sick, and to feel better.

I just went to a GI who actually advises a Celiac group about 2 hours from where I live. He had this attitude like "how dare you go on the gluten-free diet without being properly diagnosised" He said there wasen't much he could do for me except run a Celiac gene test (but that would only prove if I could'nt have it). He thinks that it is probably IBS like I have been diagnosised with I don't know how may times and wants me to try Zelnorm again. Besides missing a days work to drive to the appointment, he wants me to use a medicine I had a very bad reaction to last time (4 hours of violent D, with aching pains thru out my body for over 12 hours) that I will have to spend $47.50 for the co-pay for.

I had originally gone to see him because of neurological symptoms that I have read on this board can be related to Celiac, but good ol doc assured me that Celiac does not have any relationship with neurological  symptoms and that there is no way to even know if I am Celiac without going back on gluten (which I refuse to do), so where does that leave me?

I am so sick and tired of being sick. Even this guy, supposedly a specialist with Celiac experience seamed to not care how I felt, or what I have gone thru, he just acted upset because he would not be able to collect the $$$$ for all the appointments it would take to properly diagnosis me.

I don't know what to do. I have pretty much given up!

I do plan to attend the Celiac support group meeting in about 2 weeks....but until then, I guess I just try to keep taking one day at a time. Too sick to do much else! Sorry to go on and on, but I am on the verge of tears (yet again)!

<{POST_SNAPBACK}>

[CeliacMe]

yes, we should keep emailing her. I have emailed her and same thing, no reply.

I already e-mailed Oprah about doing a show about celiac disease. I told her I wouldn't be a candidate to be on her show as I'm still in testing and have only been sick a year. But I said she could find MANY people that took well over ten years to get diagnosed and we need to get the word out about this disease so more people will not have to suffer needlessly. Her producers/assistants (or whoever reads her show ideas section didn't respond and it's been over a week. I'm wondering if we should all start e-mailing them once a week. I'm telling you that would be the best publicity we could ever dream of getting.

<{POST_SNAPBACK}>

[SillyYakMom]

Oh, I know JUST what you mean!! I feel like if a person comes to a doctor complaining about these things it should be one of the FIRST things they test for if just to rule it out! My mom didn't get diagnosed until she was in her 30's and has now had so much damage from it she is more like an 45 year old with an 80 year old body. I was lucky I got diagnosed at 11 because of a WONDERFUL pediatrician who noticed that my brother and sister who were 4 and 5 and weighed 24 lbs were near death before it was found out. I remember being a very sick little kid. I would be sick all the time and lay on the couch knowing that any moment I would have to run to the bathroom to puke or have diarrea! So aggravating! I hope it gets better some day especially for all those people who are STILL undiagnosed.