Misdiagnosed-legal Recourse?

[hadabaday2day]

Hi there. I am new here and newly diagnosed...sort of. I just recently disgnosed myself when I found out that I should have been dignosed 4 years ago.

4 years ago I went to the doctor because I had a horrible itchy burning rash. My doctor couldn't pinpoint it at first, but after she dragged in 2 more docs and a medical dictionary they decided it was D.H. They did a biopsy and it came back positive. Then they proceeded to do a blood test which also came back + for Celiac. I really didn't know what all this meant, but they sent me to a G.I. doctor who told me that just because I had a + blood test didn't neccesarily mean that I was a celiac and that she didn't think I had it. Then she sent me on my way. Needless to say, I was just elated that I didn't have it and went on with my life. Now I know that a + blood test isn't 100% but pretty damn close. I just found out that + blood test paired with + biopsy is a diagnosis. So not only did my GP miss it, but so did the G.I. doc who probably didn't even look at my records. I am incredibly pissed and wish that I hadn't lost those four years. That I didn't have doctors telling me there was nothing wrong. That I didn't have a zillion cavities, aches, pains, and a greater risk for cancer.

I want to know if I have any legal recourse for this. I contacted one lawyer who told me that most lawyers wouldn't take a medical malpractice case unless it caused death or something catastrophic. I think that my risk of cancer paired with the million things that are wrong with me and the money I have shelled out to try to fix these things without insurance is pretty catastrophic. Of course that is only one lawyers perspective, but it was pretty discouraging. I am not money hungry or sue-happy, I just want them to be more careful, more aware of the damage they can do to someone's life. Does anyone have any experience or insight on this? Thanks so much.

Alia

[Green Eyes]

Your attorney advise is pretty accurate. The burden of proof would be left up to you and that would be very difficult to prove. Getting a "good" attorney that would actually take the case would be difficult.

I'm not sure how the medical field terms it, but the law enforcement world would focus on intent. Was the intent of the doctor to do you harm or was it just lack of knowledge? Not sure how that would play out in court.

My advise. You now know what you are dealing with. You know you have celiac and the more you can learn the better equipped you are to handle your life. You will find that you now have to be the educator to EVERYONE you deal with including doctors.

Jennifer

[home-based-mom]

I agree that you probably don't have a legal case. You could, however, collect as much concrete diagnostic info as you can - info the doctors should have known but apparently did not - and send a letter to the AMA and your state licensing board.

[*lee-lee*]

I am not money hungry or sue-happy, I just want them to be more careful, more aware of the damage they can do to someone's life.

if you're not necessarily looking for money, i agree with Sandi about writing letters to the AMA and the medical board in your state. you probably won't get anywhere with a lawsuit, if you can even get a lawyer to take your case. you might get further in your plight for education by writing letters. i think too many people sue for the wrong reasons and it takes the legitimacy away when an actual valid lawsuit is filed.

[Fiddle-Faddle]

I'm sure the above posters are correct.

However, I would still be tempted to write a non-confrontational, very direct letter to the doctor who said you DIDN'T have it, and include copies of the original biopsy that he ignored or missed, as well as records of the last 4 years' worth of serious health problems AND the out-of-pocket costs to you.

Tell him that since he missed the obvious diagnosis, you feel that he should reimburse you for the out-of-pocket costs that resulted from his miss. And add that you hope that he would actually take the time to read patients' records in the future.

[ang1e0251]

I can't see you having a legal case but I think writing to the AMA would be cleansing and help dispel a little of your anger, writing things out always does that for me. That said, I also think demanding money from your doctor would be fruitless and make you even more angry. I personally would not fuel my anger that way. It's a heavy burden to carry and will make you more sick. While you are sick, your dr will go on his merry way and not give you a second thought. As far as I can see from your story, the only one who didn't do their part was your GI. She blew you off when your PCP sent you to the Dr he felt had the most knowledge.

Dr's are concerned about their reputation. If you write to the AMA and give your opinion, ( BTW, they will take no action) then follow it up with a negative response to those websites that rate Dr's for prospective patients, you will be speaking to the people. This is the only way to really be heard.

As for me, I feel a better and more positive energy in reaching out to people who need to learn about this disease and need support. I am showing through my actions that I can lead a very normal life no matter what the odds. And I'm learning new foods to cook and dazzle my family with in the event they also show gluten-free in the future. Look to future not the past and you will heal.

[Billygean]

I'm a lawyer in the UK (well, on sabatical while I recover from celiac-induced fatigue!) and it's my understanding that you can't sue on 'loss of a chance'. There was a case where Dr didn't diagnose cancer until too late and it became terminal. There was a chance if diagnosed earlier the claimant would have survived but they are not sure. Since you do not even have a cancerous condition etc I think you wouldn't be successful, unfortunately. Your dr sounds negligent but you have to have 'actionable damage'

BG

[Fiddle-Faddle]

I'm a lawyer in the UK (well, on sabatical while I recover from celiac-induced fatigue!) and it's my understanding that you can't sue on 'loss of a chance'. ... Your dr sounds negligent but you have to have 'actionable damage'

BG

Since there are studies showing that a person with celiac can have measurable damage from as little ingested gluten as 1/16th of a slice of bread, and since she was told that it was NOT celiac when it was, it seems to me that she does have actionable damage--to her villi. There is also the question of those 3 years before she found out that she did have celiac. Were there other gluten-related disorders that popped up during that time that required medical attention? And did they resolve on a gluten-free diet? (Easy to prove if bloodwork was taken before and after to show compliance with diet.)

It sounds like Alia continued to seek medical attention for ongoing symptoms--and that the GI's initial misdiagnosis affected the direction her doctors took, as for all practical purposes, he ruled out the diagnosis of celiac. So she should be compensated for her out-of-pocket expenses for those doctor visits that were for (in restrospect) celiac symptoms. She wouldn't have needed those doctor visits had the doctor not misdiagnosed her.

In the states, I think you have to be able to prove that you were seeking help, you have to have written proof that the doctor dismissed celiac (saying he told you isn't going to cut it, as you can't prove what he did or did not tell you). So BEFORE you write a letter, or even tell that awful GI that you DO in fact have celiac, ask for ALL your records, and look for the date of visit where he said you do not have celiac. (If he already knows you do, he will likely have gone back and changed the records to cover his behind.) If you have clinical records that prove #1) he dismissed celiac as a cause even in the face of positive bloodwork and biopsy and #2) your symptoms either continued or worsened as a result, that would be actionable damage in the US (but I don't know about the UK).

I would be interested in making sure this never happens again, either from him or from another doctor (and less interested in obtaining $$ out of it, not that you are)--and that would be a point worth making to anyone who will listen.

Hey, you could always go to the media with this one--20/20, Dateline, Oprah, Larry King, etc! Or maybe Jenny McCarthy (she has had a LOT of experience with doctors not listening)!

[mushroom]

Since there are studies showing that a person with celiac can have measurable damage from as little ingested gluten as 1/16th of a slice of bread, and since she was told that it was NOT celiac when it was, it seems to me that she does have actionable damage--to her villi. There is also the question of those 3 years before she found out that she did have celiac. Were there other gluten-related disorders that popped up during that time that required medical attention? And did they resolve on a gluten-free diet? (Easy to prove if bloodwork was taken before and after to show compliance with diet.)

It sounds like Alia continued to seek medical attention for ongoing symptoms--and that the GI's initial misdiagnosis affected the direction her doctors took, as for all practical purposes, he ruled out the diagnosis of celiac. So she should be compensated for her out-of-pocket expenses for those doctor visits that were for (in restrospect) celiac symptoms. She wouldn't have needed those doctor visits had the doctor not misdiagnosed her.

In the states, I think you have to be able to prove that you were seeking help, you have to have written proof that the doctor dismissed celiac (saying he told you isn't going to cut it, as you can't prove what he did or did not tell you). So BEFORE you write a letter, or even tell that awful GI that you DO in fact have celiac, ask for ALL your records, and look for the date of visit where he said you do not have celiac. (If he already knows you do, he will likely have gone back and changed the records to cover his behind.) If you have clinical records that prove #1) he dismissed celiac as a cause even in the face of positive bloodwork and biopsy and #2) your symptoms either continued or worsened as a result, that would be actionable damage in the US (but I don't know about the UK).

I would be interested in making sure this never happens again, either from him or from another doctor (and less interested in obtaining $$ out of it, not that you are)--and that would be a point worth making to anyone who will listen.

Hey, you could always go to the media with this one--20/20, Dateline, Oprah, Larry King, etc! Or maybe Jenny McCarthy (she has had a LOT of experience with doctors not listening)!

I have worked in medical malpractice litigation in the U.S. (and have been malpracticed myself). Unfortunately, these cases are normally handled on a contingency basis like personal injury cases, meaning the attorney gets a percentage of whatever is recovered. You have to have pretty severe irreversible damage to make it worthwhile for an attorney to accept a med mal case, and the proving would be pretty difficult (with lots of expensive expert testimony). Much better, me thinks, to go the name and shame route, make them squirm in print, on T.V., wherever you can. More effective also in helping to ensure it does not happen to others.

And as Fiddle Faddle says, if he has got wind of this he will already have 'doctored' his records, an all-too-familiar trick by both doctors and hospitals.

[hadabaday2day]

Thank you for all your responses. I haven't told the G.I. doctor anything yet, so I will request a copy of my records and have already requested a copy from my G.P. I don't know if I have the energy to file a claim that nobody would be likely to back me on, but I will certainly make them squirm all I can. And great idea about contacting the media! Not only would it make them squirm, but it would be one more step towards making Celiac more well known and understood. Maybe it would help a few people get diagnosed. I would love to turn my misfortune into a way to help others. Thank you all again for your guidance.

Alia

[JNBunnie1]

Hi there. I am new here and newly diagnosed...sort of. I just recently disgnosed myself when I found out that I should have been dignosed 4 years ago.

4 years ago I went to the doctor because I had a horrible itchy burning rash. My doctor couldn't pinpoint it at first, but after she dragged in 2 more docs and a medical dictionary they decided it was D.H. They did a biopsy and it came back positive. Then they proceeded to do a blood test which also came back + for Celiac. I really didn't know what all this meant, but they sent me to a G.I. doctor who told me that just because I had a + blood test didn't neccesarily mean that I was a celiac and that she didn't think I had it. Then she sent me on my way. Needless to say, I was just elated that I didn't have it and went on with my life. Now I know that a + blood test isn't 100% but pretty damn close. I just found out that + blood test paired with + biopsy is a diagnosis. So not only did my GP miss it, but so did the G.I. doc who probably didn't even look at my records. I am incredibly pissed and wish that I hadn't lost those four years. That I didn't have doctors telling me there was nothing wrong. That I didn't have a zillion cavities, aches, pains, and a greater risk for cancer.

I want to know if I have any legal recourse for this. I contacted one lawyer who told me that most lawyers wouldn't take a medical malpractice case unless it caused death or something catastrophic. I think that my risk of cancer paired with the million things that are wrong with me and the money I have shelled out to try to fix these things without insurance is pretty catastrophic. Of course that is only one lawyers perspective, but it was pretty discouraging. I am not money hungry or sue-happy, I just want them to be more careful, more aware of the damage they can do to someone's life. Does anyone have any experience or insight on this? Thanks so much.

Alia

What you may have learned by now is that a skin biopsy that shows positive for Dermatitis Herpetiformis is a reliable, 'gold standard' test. In fact, if you hve this biopsy come back positive, further tests are unnecessary. So not only did your GI drop the ball by being ignorant about what your tests meant, your GP had no need to send you to him in the first place. After scouring your records, I would send certified letters to both, ensuring that they have to sign for them personally, and then contact maybe your local paper and see if they want to do a human interest piece on you.

[neesee]

They did a swab and that and it came back positive.

That's what you said in your first post. Did you have a biopsy done in addition to that swab? A swab isn't a biopsy.

neesee

[hadabaday2day]

They did a swab and that and it came back positive.

That's what you said in your first post. Did you have a biopsy done in addition to that swab? A swab isn't a biopsy.

neesee

I know, I know. I'm an idiot. I have the worst memory on the face of the planet. It was in fact an actual biopsy. Really I just remembered that they did something to check my skin. My memory can be very vague. I didn't remember what exactly they did or what the results were until I called them to verify. So, it was a biopsy and it was positive. Sorry for the confusion.

Alia

[rumbles]

In the U.S., I believe this would be a civil court matter, if

you can find an attorney that will accept the case. A

malpractice suit would probably be very extensive and

expensive (especially when the doctor's insurance

company attorneys gets involved), and could take years.

(Did the doctor require you to sign a binding arbitration

agreement? . . . the attorney would have to look at that

and see if they could get it thrown out if signed under duress,

- the duress possibly being that you were ill, and the only way

that you could get the help you needed was by signing . . . .)

Check with an attorney or legal aid society, - you might be

able to pursue this as a breach of contract. An implied

bilateral contract is formed when you go to a doctor, - if

you show up and pay for the service, the doctor will examine,

diagnose and help you. In the U.S., as long as you're over

18, and of sound mind, that should have the four elements

of a valid contract: consent of both parties, legal capacity

(over 18 plus sound mind), a legal act, and consideration. With

the doctor being in the position of authority, and it legally

being a confidential relationship, I'm thinking that that would

probably define a fiduciary relationship (check state law), and

may have created a full agency relationship (unless state law

exempts doctors, or states otherwise). Fiduciary would mean

that your interests would have to be above that of the

doctors and that they must give you utmost care, loyalty,

disclose material facts and account for their actions; in at

least some states, it's defined as being in a position of trust

and confidence.

After you get your medical records, if you're still wanting to

travel this path, you might want to consider taking another

way on this. Instead of a lawsuit, what if you wrote the

doctor's office a letter with your concerns, advising that you

have been in contact with attorneys, and are considering

taking legal action, but that you might reconsider that if the

doctor were to attend a local celiac support meeting or taking

additional training specifically related to celiac? Or if the hassle

doesn't seem worth it by that time, forget the whole thing,

forgive the doctor for their stupidity, and send them Dr. Green's

book. (I think I'd still send them an invite to the next celiac

support group meeting!)

[Fiddle-Faddle]

Hadabadday, you are not an idiot. They probably checked for fluorescence (DH rashes are fluorescent, for some reason) in the office, then did a biopsy to confirm.

And I hope you are soon able to change your name to HadaGOODday!

Rumbles--brilliant post! I love the idea of pressuring the doctor to LEARN something about celiac!

[neesee]

I know, I know. I'm an idiot. I have the worst memory on the face of the planet. It was in fact an actual biopsy. Really I just remembered that they did something to check my skin. My memory can be very vague. I didn't remember what exactly they did or what the results were until I called them to verify. So, it was a biopsy and it was positive. Sorry for the confusion.

Alia

You are not an idiot. With a positive biopsy, that means you do indeed have celiac. You should have been gluten-free after that biopsy was done!

neesee

[colorado]

First off, I'm sorry to hear you have had a rough four years, however there are some problems with your post:

I just found out that + blood test paired with + biopsy is a diagnosis. So not only did my GP miss it, but so did the G.I. doc who probably didn't even look at my records.

As I recall, and I will quote your post some more, your GP sent you to a GI doc, which is what they should do. They are a general practitioner. If the condition is something they cannot confidently diagnose or feel that you can be better diagnosed or receive better care at the hands of the specialist it is their responsibility to send you down that path, which they did. For the sake of pointing out what you said:

4 years ago I went to the doctor because I had a horrible itchy burning rash. My doctor couldn't pinpoint it at first, but after she dragged in 2 more docs and a medical dictionary they decided it was D.H. They did a biopsy and it came back positive. Then they proceeded to do a blood test which also came back + for Celiac. I really didn't know what all this meant, but they sent me to a G.I. doctor...

The next item is what I have the biggest issue with:

but they sent me to a G.I. doctor who told me that just because I had a + blood test didn't neccesarily mean that I was a celiac and that she didn't think I had it. Then she sent me on my way. Needless to say, I was just elated that I didn't have it and went on with my life. Now I know that a + blood test isn't 100% but pretty damn close. I just found out that + blood test paired with + biopsy is a diagnosis.

Well there you go, you even stated that a blood test may not be 100% accurate, however, I believe the GI doc should have investigated further. Even if they were unaware that a positive test for DH would be equal to a positive test for celiac disease they would probably recommended scoping you from both ends and taking biopsies that way.

Regardless, you had a diagnosis for celiac disease, you were sent to a specialist who basically told you you didn't have it, I feel like you are leaving out some details from that visit, but maybe not.

In the end, if I had a diagnosis, and another doc told me they didn't believe it was true, I would shoot for two out of three and find me another GI doc right away to get some confidence.

I am incredibly pissed and wish that I hadn't lost those four years. That I didn't have doctors telling me there was nothing wrong. That I didn't have a zillion cavities, aches, pains, and a greater risk for cancer.

I can understand why you feel the way you do, but only one doctor, per your post stated you didn't have it. The other did based on the tests and sent you to a specialist. I suspect to confirm.

It is ultimately YOUR responsibility to make sure you are getting the best care possible. No one is going to do it for you. Some doctors are going to misdiagnose, or feel you don't fit the bill for the diagnosis. If they are unwilling to really investigate your symptoms then find another doctor. Just just plod along and when you realize later that you really have something going back and wanting to sue someone over it is just ridiculous.

I really do feel for you, it is hard to live your life feeling miserable and wondering whats wrong when it seems like there is no answer. The unfortunate thing is you had the answer and you chose to disregard it because one of two doctors told you that they thought you didn't have it.

G.I. doctor who told me that just because I had a + blood test didn't neccesarily mean that I was a celiac and that she didn't think I had it.

The bigger issue now is, as you have claimed, you have diagnosed yourself. Go see a different doc, and get the answers again. For your own sake. Take an active role in your medical care, if anything seems fishy or does not seem to jive with what you are expecting, get more opinions and then make a decision from that.

One big problem is that we don't put a lot of effort into picking doctors or medical care. We put more effort into buying a car. We also like to believe that these people that went to school for all those years and charge us and our insurance all this money have all the answers. That they will always 100% of the time give us the right answer. In reality, that is not the case and that is impossible. The human body is an extraordinary thing that just baffles my mind sometimes.

Anyway, I do apologize if my post seems crass, but really think long and hard about what you went through 4 years ago and realize that was 4 years ago. You chose to continue living uncomfortably all this time when you could have continued to pursue your symptoms.

As an aside, so you know I'm not just blowing smoke and trying to argue I have been through it as well. 18 years ago CVID was staring multiple doctors in the face, none diagnosed it. Last year, after finally having been diagnosed with CVID one of my immunologists believed I might have celiac disease because I was losing my Igg at a higher rate than I should have been. I went and saw a GI doc. He had no idea what CVID is, then again, most don't. I got scoped and biopsied, I was told I had celiac disease. Plain and simple.

Diet change made no difference in my life at all. However I went along after reading on here it could take a bit to heal up (doc told me that too), but still, things continued to worsen. In the spring I was doing research and found that CVID patients can have a something that looks just like celiac disease, but it's not celiac, just appears that way.

I got me some new immunologists and a new GI doc. I took some steroids, instant and I mean instant improvement. I was recently given the okay to no longer being fanatical about my diet and I have not had one problem.

Just goes to show, doctors with the best intentions and even having real data in front of them may not always present you with the most accurate answer to your case.

Good luck with whatever you choose, and I really honestly hope going forward your life is much better and much more comfortable. We are all human beings and we all need to work together.

Happy Holidays.

[MollyBeth]

Hey, you could always go to the media with this one--20/20, Dateline, Oprah, Larry King, etc! Or maybe Jenny McCarthy (she has had a LOT of experience with doctors not listening)!

Hey I work as a television news producer for an ABC affiliate in upstate New York. I can't help you as far as getting this story on the air nationally but I can tell you that this has all the makings of a good story. I would go online and e-mail each of the big three with your story. You could even try making some phone calls. this would be a good piece, I think for one of the news magazine shows depending on what you could show them as far as your records are concerned. It would also be great because it is just another story that proves what so many of us all know...that celiac disease isn't as rare as everyone thinks including doctors and we are the ones who suffer because of their lack of knowledge.

[hadabaday2day]

First off, I'm sorry to hear you have had a rough four years, however there are some problems with your post:

As I recall, and I will quote your post some more, your GP sent you to a GI doc, which is what they should do. They are a general practitioner. If the condition is something they cannot confidently diagnose or feel that you can be better diagnosed or receive better care at the hands of the specialist it is their responsibility to send you down that path, which they did. For the sake of pointing out what you said:

The next item is what I have the biggest issue with:

Well there you go, you even stated that a blood test may not be 100% accurate, however, I believe the GI doc should have investigated further. Even if they were unaware that a positive test for DH would be equal to a positive test for celiac disease they would probably recommended scoping you from both ends and taking biopsies that way.

Regardless, you had a diagnosis for celiac disease, you were sent to a specialist who basically told you you didn't have it, I feel like you are leaving out some details from that visit, but maybe not.

In the end, if I had a diagnosis, and another doc told me they didn't believe it was true, I would shoot for two out of three and find me another GI doc right away to get some confidence.

I can understand why you feel the way you do, but only one doctor, per your post stated you didn't have it. The other did based on the tests and sent you to a specialist. I suspect to confirm.

It is ultimately YOUR responsibility to make sure you are getting the best care possible. No one is going to do it for you. Some doctors are going to misdiagnose, or feel you don't fit the bill for the diagnosis. If they are unwilling to really investigate your symptoms then find another doctor. Just just plod along and when you realize later that you really have something going back and wanting to sue someone over it is just ridiculous.

I really do feel for you, it is hard to live your life feeling miserable and wondering whats wrong when it seems like there is no answer. The unfortunate thing is you had the answer and you chose to disregard it because one of two doctors told you that they thought you didn't have it.

The bigger issue now is, as you have claimed, you have diagnosed yourself. Go see a different doc, and get the answers again. For your own sake. Take an active role in your medical care, if anything seems fishy or does not seem to jive with what you are expecting, get more opinions and then make a decision from that.

One big problem is that we don't put a lot of effort into picking doctors or medical care. We put more effort into buying a car. We also like to believe that these people that went to school for all those years and charge us and our insurance all this money have all the answers. That they will always 100% of the time give us the right answer. In reality, that is not the case and that is impossible. The human body is an extraordinary thing that just baffles my mind sometimes.

Anyway, I do apologize if my post seems crass, but really think long and hard about what you went through 4 years ago and realize that was 4 years ago. You chose to continue living uncomfortably all this time when you could have continued to pursue your symptoms.

As an aside, so you know I'm not just blowing smoke and trying to argue I have been through it as well. 18 years ago CVID was staring multiple doctors in the face, none diagnosed it. Last year, after finally having been diagnosed with CVID one of my immunologists believed I might have celiac disease because I was losing my Igg at a higher rate than I should have been. I went and saw a GI doc. He had no idea what CVID is, then again, most don't. I got scoped and biopsied, I was told I had celiac disease. Plain and simple.

Diet change made no difference in my life at all. However I went along after reading on here it could take a bit to heal up (doc told me that too), but still, things continued to worsen. In the spring I was doing research and found that CVID patients can have a something that looks just like celiac disease, but it's not celiac, just appears that way.

I got me some new immunologists and a new GI doc. I took some steroids, instant and I mean instant improvement. I was recently given the okay to no longer being fanatical about my diet and I have not had one problem.

Just goes to show, doctors with the best intentions and even having real data in front of them may not always present you with the most accurate answer to your case.

Good luck with whatever you choose, and I really honestly hope going forward your life is much better and much more comfortable. We are all human beings and we all need to work together.

Happy Holidays.

First I would like to say that I was 22 at the time. I had no idea how to be proactive with my healthcare (which I am now) and I was raised to listen to doctors.

My GP did not diagnose me Celiac. She said that in order to be diagnosed, I would need to see a GI doctor. I am not leaving anything out of that visit. I was in the room with the GI doc for maybe 5 minutes. She said that a positive blood test does not necessarily indicate that you have Celiac disease and that with my symptoms, she really didn't think I had it. I probably just had IBS. That was it. I don't even remember the lady laying a hand on me.

Granted, if that happened now, I would question it. I would see another doc. But if it happened now then it wouldn't have happened before and maybe I wouldn't be so skeptical.

I understand that it is my job to take charge of my healthcare, but I think it should be my doctors job to learn more about a disease that afflicts 1/56 people.

Another thing. I did not choose to continue living uncomfortably. I continued to see doctors for my symptoms, who tried to send me to behaivioral health specialists and ignore me. Like I was just making stuff up. Of course I had no insurance so I had no choice, but to continue seeing the same group of doctors at a community clinic.

So, yes your post does sound, and is, crass. And very presumptious. I'm glad you figured it out for yourself. I DID TOO. And now I just want to make sure that someone else doesn't have to. Like I stated in my earlier posts, I don't want their money. I want them to do something.

I think next year I'm going to remember not to check my posts the day after Christmas. Just for morale.

Alia

[Fiddle-Faddle]

I took some steroids, instant and I mean instant improvement. I was recently given the okay to no longer being fanatical about my diet and I have not had one problem.

WHOA!!!

DANGER< WILL ROBINSON< DANGER DANGER DANGER

Colorado, the steroids simply shut off your immune system's reaction to gluten--TEMPORARILY.

Your intestines (hopefully) healed with a gluten-free diet, but you MUST remain fanatical about your diet unless you want to do further damage.

Studies show that it only takes 1/16 of a piece of bread to do VISIBLE damage to the intestines--and this can be in the absence of any FELT symptoms. And it can take YEARS to redevelop symptoms--but once symptoms are noticed, extensive damge has already been done internally, and it's not necessarily limited to the intestines. The immune system can attack skin, pancreas, thyroid, liver, and/or brain--and there can be damage that cannot be undone, even after then becoming gluten-free again.

[caek-is-a-lie]

Another thing. I did not choose to continue living uncomfortably. I continued to see doctors for my symptoms, who tried to send me to behaivioral health specialists and ignore me. Like I was just making stuff up. Of course I had no insurance so I had no choice, but to continue seeing the same group of doctors at a community clinic.

Me, too, Alia. Except it was for my Narcolepsy. I saw soooo many doctors when I was 21 and I was almost always treated badly. I still am to this day, especially because I discovered gluten triggers most of my neurological problems and they still don't believe me. No, make that: now they really don't believe me. And this is despite the scientific evidence available that validates my claim.

When I was 23, one doctor insisted I stop all meds cold turkey and have a psych eval done. After a week of intensive testing, they concluded my only problem was PTSD from seeing doctors. (oh the irony) So I had to go to therapy for it. I kept telling the therapist "I just want them all to wake up one day and realize what they've done to me." He kept asking "Why?" Whaddaya mean, why? I want a sincere apology and the recognition and respect I deserve. That's why.

Like you, I also chose to stop living uncomfortably. All this has taught me that my health is really up to me. No one is going to step in and take over and Dr's don't know everything. I manage my own health, for the most part, and I'm lucky that it mostly just involves food, which doesn't require a prescription and insurance. I can tell when Dr.'s don't know what they're talking about, and I never see an abusive Neurologist twice. Dr.'s are just people, after all, and most people are jerks.

I, too, feel the need for justice for all the crap that I've been through, and would love to make them pay dearly for a decade of emotional turmoil and pain in addition to the slew of misdiagnoses and being ignored when I ask to be tested for Celiac, but the reality of it is that it's not going to happen for me. What's the recourse for someone being an incompetent jerk? None that I know of. I have to just go on with my life and try to live as well as possible (despite their best efforts to defeat that.)

Stay strong and defiant, and educate yourself as much as possible. It's your best ally.

[lokinetworks]

I don't think the Doc's really care what is causing your grief. They just want to manage it. Remember, if they

cure you then that cuts off a revenue stream. Cynical I know, but that is the impression I get from the numerous doc's I have been to. I was diagnosed with a kidney disease known as Minimal change which is a moderate disease that most times can managed in to remission with steroids or immunosuppresants. Both had no affect on me. Since then my disease progressed into FSGS which is a more severe form of kidney disease which will require a kidney transplant somewhere up the road. Googling through the web I stumbled upon a post on this board that suggested I may have Celiacs so I went Gluten-free that same day. Since then my edema has decreased and I am feeling much better than I have in years. My point is, not one of my Docs even suggested a dietary change. They just kept prescribing medication after medication, making me sicker and sicker. I think if I were you I would have gone gluten-free even if your GI doc said you did not have Celiacs.

If that was off topic I apologize. I understand your frustration. It would be great if you could hold the docs accountable for

their actions or lack of actions. But it looks like they have to actually kill you for you to have a case.

Good luck!

[hadabaday2day]

caek- It's so true. I am defiant now. Since I've had my kids anyway. I usually tell the dr. what is wrong with them instead of the other way around and I have yet to be wrong. I wish I was like that when I was younger, but I hadn't had that many bad experiences yet. That is why what Colorado said frustrated me. If none of this had happened then I would probably still be listening to whatever my doctor said. It has taken these last 4 years for me to realize what Colorado already knew. We all start somewhere, yeah?

lokin-If I had known then what I know now about Celiac I totally would have gone gluten free. Thats why my kids are going gluten free with me now even thought they have had negative blood tests. They still have positive symptoms. And no worries about the off topic thing. I don't mind at all. Like you, I have believed that for a long time about doctors. They get paid to sell prescription drugs and they get paid to see you over and over again. And I don't think it's cynical, I think it's reality. I'm quite sure that there are cures for things that we don't know about because that wouldn't make much money would it? And why else is Celiac disease such an unknown disease if 1/56 people has it? Because it provides lots of great symptoms to treat with prescriptions.

Thanks for all your replies!

Alia

[colorado]

First I would like to say that I was 22 at the time. I had no idea how to be proactive with my healthcare (which I am now) and I was raised to listen to doctors.

My GP did not diagnose me Celiac. She said that in order to be diagnosed, I would need to see a GI doctor. I am not leaving anything out of that visit. I was in the room with the GI doc for maybe 5 minutes. She said that a positive blood test does not necessarily indicate that you have Celiac disease and that with my symptoms, she really didn't think I had it. I probably just had IBS. That was it. I don't even remember the lady laying a hand on me.

Granted, if that happened now, I would question it. I would see another doc. But if it happened now then it wouldn't have happened before and maybe I wouldn't be so skeptical.

I understand that it is my job to take charge of my healthcare, but I think it should be my doctors job to learn more about a disease that afflicts 1/56 people.

Another thing. I did not choose to continue living uncomfortably. I continued to see doctors for my symptoms, who tried to send me to behaivioral health specialists and ignore me. Like I was just making stuff up. Of course I had no insurance so I had no choice, but to continue seeing the same group of doctors at a community clinic.

So, yes your post does sound, and is, crass. And very presumptious. I'm glad you figured it out for yourself. I DID TOO. And now I just want to make sure that someone else doesn't have to. Like I stated in my earlier posts, I don't want their money. I want them to do something.

I think next year I'm going to remember not to check my posts the day after Christmas. Just for morale.

Alia

I too was raised that a Doctors answer was THE answer. It took my own determination to understand that Doctors don't know it all, even the specialists. Does it mean they are accountable for not picking up on something? Maybe, you could argue it both ways for days probably. If we come up with a medical system that will scrutinize every breath a Dr takes no one will become a doctor. They are already held to a much higher standards than most professions, they carry malpractice insurance which is quite costly. All because we expect them to be perfect, mistake free and all knowing. Of course we always read stories about the few real wackos out there.

Lawsuits are a necessity sometimes, but if it is because a Dr only spent 5 minutes with you and you listened to their recommendation then what is there to sue them over? Because they didn't insist on additional tests? That doctor believed you had IBS, that was their diagnosis. You accepted it. It wasn't malicious, I can't even say it was ignorant if based on the information they were provided that believed that was your problem. In all honesty if my immunologist at the time did not send me to a GI doc specifically for celiac disease I'm sure if I did seek one out they probably would have said IBS as well. And I probably would have gone on longer complaining of symptoms, but I would have found another Dr without a doubt.

I relate the human body to a car, probably because I love cars. If you take your car into the shop because there is something wrong, your mechanic is going to diagnose the problem and recommend a remedy. You can choose to agree with it, or choose to go to another mechanic. If their remedy seems reasonable to you, then you will allow them to fix your car. However, sometimes, when they thing they have fixed the problem they haven't. What do you do? You can go back and insist they fix it right, maybe give them a second shot. Or you will take it somewhere else and have someone else do it. What if they diagnosed it incorrectly? And you spent $1K on repairs. Are you going to sue them?

We put more time an energy into making sure we have cars that run properly that we forget about taking care of ourselves the same way sometimes. We put more time and energy into buying a car than we do making sure we are going to the right doctor or getting the right care.

My situation is probably a bit more unique than most celiac patients as I have a freakin' rag tag team of doctors monitoring my every move. I can't get away with anything.

You are doing the right thing educating yourself and taking control. Hindsight is always 20/20 they say, but they are always trends in diagnosing. In fact I can probably pinpoint the height of IBS diagnosis to about 4 years ago. Which can fall in line with another respondents comments about them diagnosing to the drug companies desires. The sad thing there is some truth behind that clearly.

We are very fortunate to live in the information age, we have a lot of information at our fingertips and it is expanding daily.

As I said before, and with all my heart I want you to feel better and live a happy life. I would never wish ill will on anyone who is trying to make themselves better. I just don't agree with your desire for legal action as it is my opinion that there appears to be nothing done wrong legally. Then again, that is just my opinion as I have no vested interest in either side of your claims.

Just try and keep your head up, also, some states have programs for people without insurance or for those that are otherwise uninsurable. I'm not sure if your state has any programs or if you have already looked into anything like that but you can probably find something online if there is.

[colorado]

WHOA!!!

DANGER< WILL ROBINSON< DANGER DANGER DANGER

Colorado, the steroids simply shut off your immune system's reaction to gluten--TEMPORARILY.

Your intestines (hopefully) healed with a gluten-free diet, but you MUST remain fanatical about your diet unless you want to do further damage.

Studies show that it only takes 1/16 of a piece of bread to do VISIBLE damage to the intestines--and this can be in the absence of any FELT symptoms. And it can take YEARS to redevelop symptoms--but once symptoms are noticed, extensive damge has already been done internally, and it's not necessarily limited to the intestines. The immune system can attack skin, pancreas, thyroid, liver, and/or brain--and there can be damage that cannot be undone, even after then becoming gluten-free again.

I do not have an immune system, which sounds odd. My intestines DID NOT heal with a gluten free diet, the gluten-free diet made no difference in my symptoms, in fact I got worse. I do sadly have a good understanding of what steroids do to the body. Thankfully it was a short term thing.