Okay So Now I'm Mad At Them

[TrillumHunter]

This is totally a vent so read at your own will!

I am recently diagnosed after 13 years of symptoms and OODLES of tests. For years they had me thinking I had MS. The last MRI I had four years ago showed lesions. I was terrified! But they said they were in the wrong place for MS and that they were nothing. BUT THEY WERE SOMETHING!! I am so p***ed off at that dr right now I could scream. Why was this so hard to diagnose? I had lots of complaints but I also had verifiable abnormalities in my blood work and scans. It wasn't like there was nothing to put together.

I hope I can get over this feeling soon. I don't want to linger on this but I would really like to yell at those people for a bit!

Thanks for "listening!"

[Fiddle-Faddle]

So what were the brain lesions? (Please pardon my ignorance.)

I am particularly interested in this as the wife of a colleague has MS.

[blueeyedmanda]

I am sorry to hear this, now that you are aware of them is there going to be some kind of treatment?

[Ursa Major]

Celiac disease can cause brain lesions. Sometimes they go away on a gluten-free diet, and sometimes they are permanent.

Trillium Hunter, welcome to this board. You have every right to be angry, I was for a while as well. I was told all my life that I am just lazy, it's all in my head, first, that I wasn't eating enough, and then I was eating too much...................... And then, when finally I had chronic diarrhea, my doctor tested me for everything under the sun except for celiac disease, because I was overweight instead of wasting away.

I figured it out myself at the age of 52, even though I had celiac disease symptoms all my life.

Sometimes I still feel angry, because my whole life got messed up. And I was in awful pain most of that life, had eight miscarriages and terrible pregnancies........... But then I am thankful that I am slowly getting better. And that maybe I will actually get well (or nearly well), as I have no idea what that might be like.

Don't try to suppress the feelings of anger, that would be unhealthy. Just try not to dwell on those for too long, and try to move on. And concentrate on getting well.

[TrillumHunter]

Here's my limited understanding of it but keep in mind I'n not a doctor

I was diagnosed with extremely low b12 around four years ago. It had been longstanding because I'd had significant symptoms for seven years prior. They told me that the nerve pain and unsteadiness might not resolve completely because of demyelination it caused over such a long time. Brains can suffer demyelination as well and it looks like mine has. I've been on b12 shots since then and it has resolved a great deal but I still have bouts of unsteadiness--like being slightly intoxicated. I suppose the only way I'll know is to have another MRI and nerve conduction test in the future. But I am very unwilling to give them another RED CENT!!!! as they didn't know what they were looking at on the last one! I am very happy I don't have to worry about having MS anymore. Even with the celiac disease diagnosis that was in the back of my mind as it can be autoimmune as well.

[ravenwoodglass]

  Fiddle-Faddle said:

So what were the brain lesions? (Please pardon my ignorance.)

I am particularly interested in this as the wife of a colleague has MS.

I am another one that the idiots did this to. After I was finally diagnosed celiac I did some research.

The lesions are called in the USA "UBOs" or unidentified bright objects. They are similar in appearence to the lesions found in MS but are not in the right place to be demylinating lesions. In other countries they are diagnostic of celiac, but after all most docs in the US can't even get their brains around the idea that celiac causes problems other than just GI ones. After these were found in me I was given a prescription for antidepressants and told everything was in my head. If only they had diagnosed me then the permanent problems that my children also suffered could have been avoided. Sorry to steal the original rant.

I will never get over being angry and untrusting of doctors. In effect they stole my life through their ignorance.

[ravenwoodglass]

  TrillumHunter said:

Here's my limited understanding of it but keep in mind I'n not a doctor

I was diagnosed with extremely low b12 around four years ago. It had been longstanding because I'd had significant symptoms for seven years prior. They told me that the nerve pain and unsteadiness might not resolve completely because of demyelination it caused over such a long time. Brains can suffer demyelination as well and it looks like mine has. I've been on b12 shots since then and it has resolved a great deal but I still have bouts of unsteadiness--like being slightly intoxicated. I suppose the only way I'll know is to have another MRI and nerve conduction test in the future. But I am very unwilling to give them another RED CENT!!!! as they didn't know what they were looking at on the last one! I am very happy I don't have to worry about having MS anymore. Even with the celiac disease diagnosis that was in the back of my mind as it can be autoimmune as well.

I hope I can give you a little hope here with my experience. I have now been gluten-free for 5 years. My brain and nervous system is still repairing slowly. I had neuro symptoms that started at age 4. Within a couple months gluten-free, and with the aid of sublingual B12 the nerve pain and parathesias had resolved. Within 6 months I could run up the stairs unaided, I had been on canes for years and had gotten used to using my arms to help me get up stairs because my right leg was basically dead and I had a great deal of trouble moving it. Within 2 years I had reflexes again in my legs that had been lost in childhood. I also had some resolution of my incontinence problems. I still have some degree of ataxia after 5 years but I can at least walk across a parking lot without hanging on to anything and no longer have to rely on furniture or walls to get around the house. And people don't think I drink anymore, why else would I always be stumbling.

You may not get back to 100%, but you should be able to regain a great deal. It makes me angry too. I have never had a repeat MRI and I do wonder if the lesions have resolved but I certainly won't do it just out of curiosity. The docs most likely wouldn't consider my recovery a result of being gluten-free anyway.

[Teacher1958]

I think a lot of us are pretty pissed off. I have had this problem since I was six or seven years old (I used to sob nearly every night in pain), and I am 49 now!!! I understand that this condition probably hadn't been discovered yet when I was a child, but in the past 20-30 years, someone should have tried to figure out what was wrong!!! I was told that I had a hidden ulcer, a nervous stomach, and IBS and not to worry, because even though it was unpleasant, the IBS would cause no long term damage! Some of the "medical" advice I was given was as follows- sleep with my bed tilted up at the head, take Metamucil (great advice-not), eat "soft" foods when the problem flares up, take Prilosec, Mylanta, Hycosamine, etc., don't eat fried foods...blah, blah, blah... When I was in my twenties puking myself senseless on a regular basis, did that not seem like something that would require some type of testing???? I really like my current doctor, but she had to get on her computer to check out the specifics of the disease and kept telling me that I will likely be getting a colonoscopy, but I am pretty sure it's an endoscopy that I need. In additon, she went ahead and gave me the blood test when I'd already been off of wheat for 2-3 weeks. Of course, the test was negative! I had just assumed she'd found a new blood test that would detect celiac disease/gluten allergy without the patient having to go back on wheat. Now I'm going to be referred to a gastroenterologist, but I wonder if he will have a clue about what's going on. I talked to a woman last night who said that we have to be responsible for diagnosing our own problems. If I had known this, I would have gone into medicine!!!!!

[debmidge]

  TrillumHunter said:

This is totally a vent so read at your own will!

I am recently diagnosed after 13 years of symptoms and OODLES of tests. For years they had me thinking I had MS. The last MRI I had four years ago showed lesions. I was terrified! But they said they were in the wrong place for MS and that they were nothing. BUT THEY WERE SOMETHING!! I am so p***ed off at that dr right now I could scream. Why was this so hard to diagnose? I had lots of complaints but I also had verifiable abnormalities in my blood work and scans. It wasn't like there was nothing to put together.

I hope I can get over this feeling soon. I don't want to linger on this but I would really like to yell at those people for a bit!

Thanks for "listening!"

Trillium: I understand your pain and frustation on behalf of my husband who has gone thru similar medical malpractice and whose body is ruined by the ravages of this unchecked disease. We are sorry you had to have this heartbreak. Nothing is worse than having your health taken from you WHILE YOU are under a specialist's care,cusody, control, etc.

Deb

[debmidge]

  Teacher1958 said:

I talked to a woman last night who said that we have to be responsible for diagnosing our own problems. If I had known this, I would have gone into medicine!!!!!

I've heard this hard-hearted statement before and it's baloney! We are responsible for our health but if you don't know a disease exists you cannot be expected to diagnose it. Here's another statement (I think I am quoting someone famous, and it's not verbatim but here goes): The person who has himself for a doctor, has a fool for a physician."

The non-medical person cannot be held responsible for knowing something that they don't know exists and how to even start looking it up. So don't feel guilty for not knowing. That person who said what she said has no empathy or compassion....

[Fiddle-Faddle]

  debmidge said:

I've heard this hard-hearted statement before and it's baloney!

I read this differently. I don't think it's meant to be hard-hearted. On the contrary, it's stating as an unfortunate fact the kind of thing many of us here had to go through. It's a comment on the failure of our medical system.

So many of us here ended up diagnosing ourselves because the doctors in charge did not even consider celiac as a possibility. Many others were misdiagnosed for years before their doctors figured it out.

In theory, yes, of course, the doctors ought to be able to immediately pinpoint what might be wrong with us, order the correct tests, and give us the correct advice. BUT THEY DON'T.

Our only alternative is to do the research ourselves, and diagnose ourselves. No, we don't have medical training. No we shouldn't have to resort to this. But if we don't, we are left with either delayed diagnoses, or worse, wrong diagnoses.

What is really scary is that there is bound to be someone who will (possibly correctly) diagnose himself with celiac--and have something worse, like stomach cancer, that goes undiagnosed.

Thankfully, we have the internet resources today where we can google our symptoms, and most, if not all, of the possibilities will pop up. We may not know a disease exists, but we can easily find it anyway with a simple search of symptoms. Given that, and the fact the doctors in this country are not trained to find causes of problems but instead are trained to administer drugs to mask symptoms, IMHO it is our unfortunate responsibility to take charge of our own health. That means we have to be on top of what our symptoms are, and what those symptoms might mean, before we make an appointment with the doctor. Otherwise, the doctor will likely not take us seriously, and give us a prescription to quiet our symptoms and make us shut up and go away so he can get to his next patient as quickly as possible.

I wish it weren't like this, but most of the time, this is how it is.

Should we have to be responsible for diagnosing our own problems? In theory, no. In reality, yes.

I don't know about you, but I'm no longer going to abdicate the responsibility of my own health to someone who is likely to screw it up; I and my family (and most of you, I bet) have been the victims of far too many medical screw-ups for me to trust them any longer. Not that I will never go to the doctor again. But I will go to the doctor armed with as much knowledge as I can get from the Internet, so that I am on equal footing (or better) with the doctor. It's my health and LIFE, not his, that are at stake.

[spunky]

Fiddle Faddle...my thoughts, exactly.

It's so unfortunate that we can't really rely on doctors. I gave up on them years ago, after discovering that just about everything they ever diagnosed in me was incorrect, and just about every med or treatment they did to me backfired and caused me even more health problems.

It's pretty crazy, but I feel the real "experts" in celiac are right HERE, and I am grateful every DAY of my life I found this forum and starting lurking (I mostly lurk!) and finally figured out my problems from that.

I'm the healthiest I can ever remember now, since giving up gluten 15 months ago. I'm pretty old too...mid-fifties , and although my recovery has seemed extremely slow at various points, lots of ups and downs, etc., today, at 15 months into gluten free, I am feeling so healthy it's just amazing. I am so glad I finally caught on to the damage and daily struggle gluten was causing me.

It's kind of a sorry state when a message board on the net functions as better medicine than an army of doctors can do!

[jacqui]

  TrillumHunter said:

Here's my limited understanding of it but keep in mind I'n not a doctor

I was diagnosed with extremely low b12 around four years ago. It had been longstanding because I'd had significant symptoms for seven years prior. They told me that the nerve pain and unsteadiness might not resolve completely because of demyelination it caused over such a long time. Brains can suffer demyelination as well and it looks like mine has. I've been on b12 shots since then and it has resolved a great deal but I still have bouts of unsteadiness--like being slightly intoxicated. I suppose the only way I'll know is to have another MRI and nerve conduction test in the future. But I am very unwilling to give them another RED CENT!!!! as they didn't know what they were looking at on the last one! I am very happy I don't have to worry about having MS anymore. Even with the celiac disease diagnosis that was in the back of my mind as it can be autoimmune as well.

Where are you? I really want to know your stuff b/c I too have a lesion that was said to be a heterotopia, meaning my white matter crossed the border into the gray matter area or vice versa, and that I was born that way. I have had MRI's with and w/o contrat since 2003 and only in 2005 was I told about this heterotopic area. In April 2006 I was diagnosed with celiac disease. I have since had 2 more MRI's one regular and one a 3T (double strength) done by different places. Stanford radiologist said it is not a heterotopia but an old lesion post trauma, post infection, post stroke or a distant (I forget the word but old lesion from else where) demyelination. The 3 T was done at another large known facility and I had 2 neurologists and a student staring at my brain saying to each other and not me "...hmm, could that be doing all this...yeah, I thought her white matter looked weird too,...maybe the 3T distorted it some..." Distorted it! I only did this b/c I had a reg. one done in Nov. and did not want to pay for another 3 months later. I only did it b/c it was supposed to be so much better and the doc wanted another MRI...

My docs keep going back to depression and I absolutely do not agree, well to a certain extent I am an angry depressed I guess. If anything I was fine until I became ill and then jerked around by one specialist after another that NOW I would agree to an angry depressed.

Anyway I would like to hear from you if you don't mind.

Take care,

Jacqui

[NY547]

Hi, I am also very frustrated. Ravenwoodglass, I am very interested in your signature, are there many people who test negative on routine blood work but do have celiac or a problem with gluten? I have been told that the tests are now very accurate and there is no need for the endoscopy.

Just wondering how many have had negative blood tests, but later find out they do have an adverse reaction to gluten

[ravenwoodglass]

  NY547 said:

Hi, I am also very frustrated. Ravenwoodglass, I am very interested in your signature, are there many people who test negative on routine blood work but do have celiac or a problem with gluten? I have been told that the tests are now very accurate and there is no need for the endoscopy.

Just wondering how many have had negative blood tests, but later find out they do have an adverse reaction to gluten

Too many I think. My GI doctor said a week or so ago that even the newest testing is still very hit and miss. In addition many doctors will call a low positive a negative. My DH and my DD both had very low positives. The doctor told my DD that she was not celiac yet but was showing changes on the endo, scalloping and changes in the mucosal lining. Then told her that she could keep eating the stuff until she was clearly damaged enough to declare she was celiac. Not good advice IMHO. With my DH he just picked up the test results, saw he was only one point into positive and chose to degluten himself. The doc called his results negative, the dietary response he has had shows they were not. The best test IMHO after all my suffering and as a result some permanent damage because of relying on the tests, is to do the diet strictly for at least three months.

[debmidge]

In my humble opinion it is a hard-hearted statement as a lot of people on this board originally got sick BEFORE internet and ways to research this. That statement makes us feel like do-do as it implies that we didn't do all we could to research the medical problem - thirty years ago. It makes people who don't have the same resouces as others feel that somehow they are responsible for not "getting it right" from the beginning. To put it bluntly, this statement offends me.

Before "freedom of information acts" and before the ability to get your medical records from your doctor, medicine was shrouded in secrecy and information was shared only with other doctors. This was the era you had to rely on doctors. It is hard to swallow this statement if you have been going through doctor's care for many years and every different doctor you went to said the same mis-diagnosis 20-30 years ago.

Nowadays it is so much easier to find things out and for those who have just recently come down with celiac disease they don't understand the struggle their elders had. I agree you are responsible for your own well-being, but only to the extent you are able to find out information.

[tiredofdoctors]

As far back as 1968 there are published articles with regard to Gluten Ataxia. The medical community dismissed this as rediculous. Six years ago, Dr. Hadjivassiliou began taking up where they left off using more state of the art technology. Again, he was written off as being rediculous. Last year, FIVE YEARS AFTER HIS INITIAL STUDY, when he proved conclusively with MRS -- Magnetic Resonance Spectroscopy -- that there is, indeed cerebellar damage in patients who have antigliadin antibodies and are non-symptomatic for Celiac -- he has finally been taken seriously. And who benefits? Peter Greene, who write "Celiac: The Hidden Epidemic"!!!!! He is being heralded as a genius and the foremost authority on Celiac, when he is actually just collecting the various studies which have been done for years! Not that I'm not grateful to him for doing that -- he is actually being taken seriously by the medical community.

I agree with Debbie as far as the internet is concerned -- these journals have always been available at the library. It just took a VERY long time to find what you needed, and you didn't have much to go on. Physicians DID shroud everything in mystery -- it further enhanced their status and their egos.

I think for so long, it was easier for physicians to claim that "it was all in our heads", call us psychiatric patients, give us the diagnosis of "conversion disorder" (I HATE that one) and treat us as though we were either hystrionic or delusional rather than actually delve into the cause of these symptoms. It was just the easy way out. A lot of physicians receive the journals that they do because they are affiliated with a particular association. I know a WHOLE LOT of them who don't ever pick up the journal -- just file it nicely on their shelves, so that it looks as though they have a whole reference library at their disposal. Actually, I have gone to those physicians -- but don't anymore.

I'm hoping, as Neurological Celiac becomes more widely accepted as a diagnosis, that physicians will educate themselves as to the signs and symptoms of this disease. Until then, it's up to us -- the patients -- to take in copies of the articles, hand them to the doctor, and make them read AT LEAST the title of the journal article while we're in there. We have to be our best advocate right now.

[debmidge]

  tiredofdoctors!!! said:

-- these journals have always been available at the library. It just took a VERY long time to find what you needed, and you didn't have much to go on.

Lynne

Would these journals have been written in a format that the lay person would have had difficulty following or understanding? Would they have been found in libraries of medical universities or colleges with a strong science cirriculum?

[jacqui]

  tiredofdoctors!!! said:

As far back as 1968 there are published articles with regard to Gluten Ataxia. The medical community dismissed this as rediculous. Six years ago, Dr. Hadjivassiliou began taking up where they left off using more state of the art technology. Again, he was written off as being rediculous. Last year, FIVE YEARS AFTER HIS INITIAL STUDY, when he proved conclusively with MRS -- Magnetic Resonance Spectroscopy -- that there is, indeed cerebellar damage in patients who have antigliadin antibodies and are non-symptomatic for Celiac -- he has finally been taken seriously. And who benefits? Peter Greene, who write "Celiac: The Hidden Epidemic"!!!!! He is being heralded as a genius and the foremost authority on Celiac, when he is actually just collecting the various studies which have been done for years! Not that I'm not grateful to him for doing that -- he is actually being taken seriously by the medical community.

I agree with Debbie as far as the internet is concerned -- these journals have always been available at the library. It just took a VERY long time to find what you needed, and you didn't have much to go on. Physicians DID shroud everything in mystery -- it further enhanced their status and their egos.

I think for so long, it was easier for physicians to claim that "it was all in our heads", call us psychiatric patients, give us the diagnosis of "conversion disorder" (I HATE that one) and treat us as though we were either hystrionic or delusional rather than actually delve into the cause of these symptoms. It was just the easy way out. A lot of physicians receive the journals that they do because they are affiliated with a particular association. I know a WHOLE LOT of them who don't ever pick up the journal -- just file it nicely on their shelves, so that it looks as though they have a whole reference library at their disposal. Actually, I have gone to those physicians -- but don't anymore.

I'm hoping, as Neurological Celiac becomes more widely accepted as a diagnosis, that physicians will educate themselves as to the signs and symptoms of this disease. Until then, it's up to us -- the patients -- to take in copies of the articles, hand them to the doctor, and make them read AT LEAST the title of the journal article while we're in there. We have to be our best advocate right now.

I don't know if I said this already, but I just went a week and 1/2 ago to a neuro who specializes in balance disorders and he said, "You'll get better..." I asked if it is related to gluten and he siad"...we ll,other symptoms improved since you have been gluten free, I would stay gluten free..." No #$%^&* sh--!! I have celiac disease!!! You flippin'@!#$%^&* I have to keep gluten free for life!! Of course stupid me didn't really say that but that is what my husband and I were thinking. He also went back to the good all fail safe dx of depression"...keep a diary of events on the days that seem a little better and the days that seem worse..." The neuro (his colleague) a month before him was dumbfounded with my awful balance and weak reflexes... yet they both said I am cerebrally grossly intact!! I asked how that could be and they said b/c I catch myself from falling. Whatever.

As for the spot on my brain it has been called many a things from a heterotopia to post inflammation, post infection, post old ischemic event, demyelination...to not a heterotopia b/c of location. I am an RN an d am absolutely disgusted with the medical field.

Believe it or not the only doc interested in the articles I brought in by Dr. H is the SSDI doctor at my interview. He acted genually interested. He could not believe all the neuro stuff I have going on. My doc and my kids doc's have all given the articles/packettes I gave them back to me with lab slips or whatever I needed to pick up. I guess there is hope...

Sorry for taking away from someelses spotlight.

Take care,

Jacqui

[NY547]

No matter whether the statement made to teacher regarding our responsibility to diagnose ourselves was made to be hard hearted or simply directed to the medical community, the fact remains that when it comes to celiac or gluten sensitivity, the medical community in this country comes up short.

My feeling is that just about everyone on this board has researched and done whatever they can to get an official dx, but many times the doctors dismiss the lay person's research anyway. And in todays day in age, most lay people do still rely on the "experts" to treat them and diagnose what is wrong. It doesn't matter how easy the information is to obtain, or even what is availbale. The experts have many more resources at their fingertips and should be trying to find the underlying causes and not just treat the symptoms.

Health care providers do have a responsibilty to their patients, it should not be the patients responsibilty to diagnose themselves. I also think the statement was hard hearted and made by someone who has never gone through being misdiagnosed, even after presenting well documented information to their doctors.

Thanks for your reply to my question, Ravenwoodsglass, I appreciate the feedback. I will revisit the possibility of celiac or gluten sensitivity with my daughter's doctor on Tuesday.

She did test positive by enterolab and the articles from the link on this thread will certainly be in my hand when we go for the appointment.

[Fiddle-Faddle]

  debmidge said:

In my humble opinion it is a hard-hearted statement as a lot of people on this board originally got sick BEFORE internet and ways to research this. That statement makes us feel like do-do as it implies that we didn't do all we could to research the medical problem - thirty years ago. It makes people who don't have the same resouces as others feel that somehow they are responsible for not "getting it right" from the beginning. To put it bluntly, this statement offends me.

Before "freedom of information acts" and before the ability to get your medical records from your doctor, medicine was shrouded in secrecy and information was shared only with other doctors. This was the era you had to rely on doctors. It is hard to swallow this statement if you have been going through doctor's care for many years and every different doctor you went to said the same mis-diagnosis 20-30 years ago.

Nowadays it is so much easier to find things out and for those who have just recently come down with celiac disease they don't understand the struggle their elders had. I agree you are responsible for your own well-being, but only to the extent you are able to find out information.

You do make an excellent point.

My mother (who has no medical background whatsoever) used to go to med school libraries to look things up. She has a distrust of doctors from way, way back, including when they couldn't diagnose some of her problems correctly when she was a child, and also a horrific misdiagnosis when I was a baby (I had hip displasia, which was healing just fine, but the supposedly top-of-the-field expert in NY misread the X-rays and told her that my hips were degenerating instead of healing and that I would have to be institutionalized and that I would never walk).

The MD misdiagnoses of my own children are too many count, but the most glaring was when I was told that my 6-week-old baby's suddenly yellow skin was either breastmilk jaundice or simply his Japanese heritage. It was actually liver problems caused by congestive heart failure--he had two holes in his heart, and one was huge.

Anyway, I guess you could hold people today to a much higher standard, because of the availability of info on the Internet, and call it a cultural problem that for so many years, we were expected to treat doctors as experts in our health when in reality, most only knew what they had been taught by the pharmaceutical industry.

But either way, today, today you DO have to do your own research. It's a simple fact.

[debmidge]

  Fiddle-Faddle said:

You do make an excellent point.

My mother (who has no medical background whatsoever) used to go to med school libraries to look things up. She has a distrust of doctors from way, way back, including when they couldn't diagnose some of her problems correctly when she was a child, and also a horrific misdiagnosis when I was a baby (I had hip displasia, which was healing just fine, but the supposedly top-of-the-field expert in NY misread the X-rays and told her that my hips were degenerating instead of healing and that I would have to be institutionalized and that I would never walk).

The MD misdiagnoses of my own children are too many count, but the most glaring was when I was told that my 6-week-old baby's suddenly yellow skin was either breastmilk jaundice or simply his Japanese heritage. It was actually liver problems caused by congestive heart failure--he had two holes in his heart, and one was huge.

Anyway, I guess you could hold people today to a much higher standard, because of the availability of info on the Internet, and call it a cultural problem that for so many years, we were expected to treat doctors as experts in our health when in reality, most only knew what they had been taught by the pharmaceutical industry.

But either way, today, today you DO have to do your own research. It's a simple fact.

Agreed...do the research - however, I won't hold anyone who is not holding a diploma of advanced medical education responsible -- this will only make them a victim twice.

Additionally, there's a point where you have exhausted your resources (not all of us live near or have access to a medical library) ....for us we were young and relied on the "specialist's" medical opinion; as having heard the same diagnosis over and over.

I didn't even know something like celiac existed in 1978. How can one be on a track to "research" when you are ignorant of "what" to research...it's like looking for a lightswitch in a pitch black room when no lightswitch exists.

So once you know "what" to research - go for it! That's what brought me here!

[nikki-uk]

  debmidge said:

I didn't even know something like celiac existed in 1978. How can one be on a track to "research" when you are ignorant of "what" to research...it's like looking for a lightswitch in a pitch black room when no lightswitch exists.

So once you know "what" to research - go for it! That's what brought me here!

Back when my hubby was (I thought) dying in hospital wasting away I used to spend as much time on the PC as possible in between visiting him.

I remember I briefly touched on celiac disease but dismissed it because nothing I read seemed to suggest you could be as ill as my hubby was and of course neg bloods

I'd decided (in my research) that it was autoimmune leaning towards chronic fatigue syndrome

Thankfully the biopsies gave him his dx...but I'm sure I would have been drawn back to look at celiac disease

[debmidge]

  nikki-uk said:

Back when my hubby was (I thought) dying in hospital wasting away I used to spend as much time on the PC as possible in between visiting him.

I remember I briefly touched on celiac disease but dismissed it because nothing I read seemed to suggest you could be as ill as my hubby was and of course neg bloods

I'd decided (in my research) that it was autoimmune leaning towards chronic fatigue syndrome

Thankfully the biopsies gave him his dx...but I'm sure I would have been drawn back to look at celiac disease

Nikki

That was what was happening to my husband too. (but he refused hospitalization)...anyway, all blood tests were coming up that he was healthy as a horse! No anemia, good numbers on everything! This was BEFORE the specific anti-gen tests for gluten intolerance. I had no idea that these were invented as I was never looking in that direction. We were concentrating on IBS, pancreas and liver deficiencies....at that time I thought that IBS and colitis were real diseases...that's what we were led to believe from Gastros doctors.

Additionally, back then, if I am remembering correctly, the medical community and journals in USA attributed celiac disease as a childhood disease (well he was 27 at the time) and something that a kid could grow out of.....ha ha! they were wrong! But how were we to know when they didn't even know?

[Fiddle-Faddle]

  debmidge said:

Agreed...do the research - however, I won't hold anyone who is not holding a diploma of advanced medical education responsible -- this will only make them a victim twice.

Nope, can't agree with that today, at least, not if you have a computer. You don't need to know what you are looking for. I had no clue what I was looking for when I googled, "rash" and "thyroid," because that's all I had to go on, and I still found celiac.

I didn't realize I was having digestive symptoms til they went away (now, doesn't that sound idiotic??!!). But I was able to find a picture of DH that looked EXACTLY like my rash, even though the dermatologist sniffed and said it couldn't be DH since it was on my arms. By the time I was able to convince him to do the bloodwork, I had already been gluten-free for a month (I didn't know enough back then), yet my IgG was through the roof. And the dermatologist insisted that it was normal, but I found you guys, asked questions, and you guys helped me understand that it wasn't.

Bottom line: if you have a computer, a high school education or better, and you are reasonably intelligent, you are capable of doing the research--all you need to do is google your symptoms, and read what comes up and decide if it fits or not. And if you are capable of doing the research, there is no reason you should take an MD's word for anything.

I do not have a diploma of advanced medical education, but I cannot for a minute say that any doctor (at this point) is more responsible for my health than I am.

My mother didn't have a medical degree, either--her degree was in English. And our little town didn't even have a college, let alone a medical school. She went wherever she needed to go (I think it was either Northwester or U. of Chicago) in order to access the med school library, and she xeroxed whatever seemed appropriate, and brought it home and read it.

I don't mean to make you feel bad about 30 years ago, and if I did, I sincerely apologize.