I Don't Know Whether To Cry Or Scream Or....

[MsCurious]

I'm so disgusted and untrusting of doctors after just reading through my lab results that I picked up from the doctors office. They didn't send me the "FULL" story... just whether the tests were positive or negative.

They told me my EMA was negative.... negative?... NEGATIVE? How can it be negative ... if they NEVER PERFORMED IT?

That's not the worst of it! They told me my tTG IgA and IgG were negative. Turns out they were ... Borderline! Not negative.

I'm so glad I went to a different GI! At least I should find out the truth from him. But I'm so disgusted! If I end up with a positive celiac disease diagnosis... I'm going to send a letter to "GI Jerk" along with several links to recent research findings, and tell him he's a disgrace to his profession, and has done his patients an injustice. I'm going to tell him he should either learn what he needs to know, or hang up his stethoscope, and let his huge pool of IBS patients find another doctor who WILL test them for celiac. I wonder how he can look himself in the mirror in the morning... knowing he does a half@$$ed job every day. Its very sad...when I think of all the people who have trusted him.

Sorry... just needed to VENT ... makes me very upset.

[mushroom]

That is plain lying, to tell you a test was negative when it was never even performed. That being said, there are many, many doctors out there who regard anything borderline as negative for some reason. If it is not a clear positive then for them it is negative. This is the reason we keep telling everyone to get a copy of your test results because you do need to know the whole story. If you are borderline now, how long will it take until you are no longer borderline? My hubs was told he was borderline Celiac too. He is too lazy, I guess, to get a copy of his records, because he has the same doc I have who will willingly give them to him. He found out he was actually celiac when he broke out in DH. No more borderline there.

It is upsetting, and I'm sorry it happened to you, but having worked for doctors and lawyers for years I am used to their ways. Anything that is not positive is negative And yet we gluten intolerants live in the gray, not the black or white because those colours don't exist for us.. But gray is a color they cannot seem to see.

Good luck with your new GI

[zus888]

Great color analogy, Mushroom!

So sorry about your crappy doc. I've had crappy docs myself and am so glad I'm not dealing with them anymore. If you are my doc, you need to leave your ego at the door, or you'll be seeing my back as I walk out of it!

[IrishHeart]

Cannot begin to tell you how much I can relate to your frustration and anger. I have had many years of this kind of "treatment" from doctors. I was left to dwindle down to nothing.

When I am fully healed, I will be sending them all a letter, telling them exactly what was REALLY wrong with me and how they missed the boat.

There's not much we can do about it. I know I need to get over my anger with them all. In time, I will.

In the meantime, you should vent away ...it's therapeutic!!

[Jaymie Jaymz]

I better go pick up a copy of my test results for the Celiac panel I had done then. They said everything looked fine, but now I want to see for myself.

Did you just show up there and ask for the results, or do they need some time to get them ready for you?

[IrishHeart]

  On 3/29/2011 at 3:39 PM, Jaymie Jaymz said:

I better go pick up a copy of my test results for the Celiac panel I had done then. They said everything looked fine, but now I want to see for myself.

Did you just show up there and ask for the results, or do they need some time to get them ready for you?

They are required by law (at least in NY) to give you a copy of your test results upon request. My doctors ask for a written request --for their records--and they fax or mail it to me. I always ask for copies of test results now because I have been "borderline" anemic and hypothyroid all of my life and was told "your tests are fine"... These are all indicators of our disease!! geesh....

[Emsstacey]

I had a similar result. My dr. said my celiac panel was negative and I expressed that I was surprised. He then added, well... only one came back positive-- the DGP. Not very convincing, overall negative.

[kareng]

  On 3/29/2011 at 3:39 PM, Jaymie Jaymz said:

I better go pick up a copy of my test results for the Celiac panel I had done then. They said everything looked fine, but now I want to see for myself.

Did you just show up there and ask for the results, or do they need some time to get them ready for you?

Be polite & friendly & call first. Your just talking to a clerical worker. Give them a day to do it. They could charge you for the copies but usually doctor offices don't. You can always tell them you were told by another doctor to bring them to your appointment (OB/GYN works well for this).

Let me know if you have a problem - message me.

[MsCurious]

  On 3/29/2011 at 3:39 PM, Jaymie Jaymz said:

I better go pick up a copy of my test results for the Celiac panel I had done then. They said everything looked fine, but now I want to see for myself.

Did you just show up there and ask for the results, or do they need some time to get them ready for you?

I just went to member services and filled out a form and she clicked on her lil buttons on the PC and they printed. Yeah, you really should get them. I was shocked at the things that are listed that they don't bother to tell you!

[MsCurious]

  On 3/29/2011 at 9:03 AM, mushroom said:

That is plain lying, to tell you a test was negative when it was never even performed. That being said, there are many, many doctors out there who regard anything borderline as negative for some reason. If it is not a clear positive then for them it is negative. This is the reason we keep telling everyone to get a copy of your test results because you do need to know the whole story. If you are borderline now, how long will it take until you are no longer borderline? My hubs was told he was borderline Celiac too. He is too lazy, I guess, to get a copy of his records, because he has the same doc I have who will willingly give them to him. He found out he was actually celiac when he broke out in DH. No more borderline there.

It is upsetting, and I'm sorry it happened to you, but having worked for doctors and lawyers for years I am used to their ways. Anything that is not positive is negative And yet we gluten intolerants live in the gray, not the black or white because those colours don't exist for us.. But gray is a color they cannot seem to see.

Good luck with your new GI

You are so right, Mushroom! Thank you so much for your reply, the support is very much appreciated. Sometimes I feel like my family is just tired of hearing about it or thinking about it... I think they don't want to deal with what is probably coming down the pike for some of them as well, and it will impact their families too... so based on that... I'm not their favorite person to chat with right now. ;P My sister said to me this morning, "I don't want Celiac... don't give it to me!" ROTFL... sheesh... I said its genetic... blame mom and dad ... not me! HAHA.. good grief! At least we can laugh about it ... for the moment.

[MsCurious]

  On 3/29/2011 at 12:49 PM, zus888 said:

Great color analogy, Mushroom!

So sorry about your crappy doc. I've had crappy docs myself and am so glad I'm not dealing with them anymore. If you are my doc, you need to leave your ego at the door, or you'll be seeing my back as I walk out of it!

I AGREE! That's just what I did with "GI Jerk" ... walked out, came home and cancelled my biopsy with him. I had to wait about 6 weeks extra...but I'd rather have a good doctor than a fast jerk working on me.

[MsCurious]

  On 3/29/2011 at 1:53 PM, IrishHeart said:

Cannot begin to tell you how much I can relate to your frustration and anger. I have had many years of this kind of "treatment" from doctors. I was left to dwindle down to nothing.

When I am fully healed, I will be sending them all a letter, telling them exactly what was REALLY wrong with me and how they missed the boat.

There's not much we can do about it. I know I need to get over my anger with them all. In time, I will.

In the meantime, you should vent away ...it's therapeutic!!

Awwww.. Irish, I get sad everytime I hear bits of your story. I'm so sorry you had to have so many bad experiences. At least this one seems to be more limited. I'm not letting it go on... just nipping it in the bud. It really helps to have so many nice people giving me moral support to do that, though. I don't know if I would have been knowledgable enough without the help of everybody on this site.

[MsCurious]

  On 3/29/2011 at 6:20 PM, Emsstacey said:

I had a similar result. My dr. said my celiac panel was negative and I expressed that I was surprised. He then added, well... only one came back positive-- the DGP. Not very convincing, overall negative.

OMG! I hope you fired that one fast... good grief! The DGP is the one I can't seem to get them to run. I believe it would be helpful.

[IrishHeart]

  On 3/29/2011 at 10:40 PM, MsCurious said:

Awwww.. Irish, I get sad everytime I hear bits of your story. I'm so sorry you had to have so many bad experiences. At least this one seems to be more limited. I'm not letting it go on... just nipping it in the bud. It really helps to have so many nice people giving me moral support to do that, though. I don't know if I would have been knowledgable enough without the help of everybody on this site.

Oh, hon...please do not be sad. I'm going to be all right in time. I have no doubt. I had some bad breaks, but I am a fighter and have my PC doctor on board 100% now.

This site was a major factor in convincing me my "functional med"doctor, the gastro's NP, and the blood tests were wrong. My gluten-free diet has proven that...and little by little, I am improving.

I have scores to settle --and I will--but I need to be strong first!

[Jaymie Jaymz]

  On 3/29/2011 at 6:37 PM, kareng said:

Be polite & friendly & call first. Your just talking to a clerical worker. Give them a day to do it. They could charge you for the copies but usually doctor offices don't. You can always tell them you were told by another doctor to bring them to your appointment (OB/GYN works well for this).

Let me know if you have a problem - message me.

Thanks, Karen. I have my endoscopy tomorrow, so I think I'll wait until those results are back as well and then just pick them all up at one time. I'll call a day ahead, though. Give them some time to print them out or whatever.

[cassP]

  On 3/30/2011 at 3:38 AM, Jaymie Jaymz said:

Thanks, Karen. I have my endoscopy tomorrow, so I think I'll wait until those results are back as well and then just pick them all up at one time. I'll call a day ahead, though. Give them some time to print them out or whatever.

i always just call my doctor's receptionist- and ask her over the phone to mail me my results and they always do. good luck to you-

[Emsstacey]

  On 3/29/2011 at 10:42 PM, MsCurious said:

OMG! I hope you fired that one fast... good grief! The DGP is the one I can't seem to get them to run. I believe it would be helpful.

Yeah, he is no longer my doc. He also said, "I guess I can refer you to a GI if you really want to," Uh no, at the time I was tired of doctors!!

It's been 2 and a half year and I am just assuming it was the DGP. It said something to the effect of "gliadin, deamidated". It was right at the beginning of it being offered. I wouldn't think the AGA would have ever said deamidated-- right?

[MsCurious]

  On 3/30/2011 at 11:43 PM, Emsstacey said:

Yeah, he is no longer my doc. He also said, "I guess I can refer you to a GI if you really want to," Uh no, at the time I was tired of doctors!!

It's been 2 and a half year and I am just assuming it was the DGP. It said something to the effect of "gliadin, deamidated". It was right at the beginning of it being offered. I wouldn't think the AGA would have ever said deamidated-- right?

Sorry for the delay in responding, Emsstacey. I haven't been on until now. I'm not sure if the DGP was widely available 2.5 years ago, but the name is deamidated gliadin peptides. I'm not sure what the AGA is. I hope you get it figured out.

[mushroom]

No, I think you are pretty safe in assuming it was the DGP. AGA is anti-gliadin antibodies, which is totally different.

[nuttmegs17]

I'm with you - my new Doc blew off my celiac blood test when they failed to give a number and instead just said negative. He said, unless it's zero, if you have ANY antibodies present, you should consider yourself gluten intolerant...it would be like saying you are not pregnant when you take a pregnancy test - you either are pregnant or you are not....you can't be just a little bit pregnant. Seriously, I will stress to friends and family that they know and study and lab results based on what I have learned on this journey.

[Igg postive]

  On 3/29/2011 at 8:31 AM, MsCurious said:

I'm so disgusted and untrusting of doctors after just reading through my lab results that I picked up from the doctors office. They didn't send me the "FULL" story... just whether the tests were positive or negative.

They told me my EMA was negative.... negative?... NEGATIVE? How can it be negative ... if they NEVER PERFORMED IT?

That's not the worst of it! They told me my tTG IgA and IgG were negative. Turns out they were ... Borderline! Not negative.

I'm so glad I went to a different GI! At least I should find out the truth from him. But I'm so disgusted! If I end up with a positive celiac disease diagnosis... I'm going to send a letter to "GI Jerk" along with several links to recent research findings, and tell him he's a disgrace to his profession, and has done his patients an injustice. I'm going to tell him he should either learn what he needs to know, or hang up his stethoscope, and let his huge pool of IBS patients find another doctor who WILL test them for celiac. I wonder how he can look himself in the mirror in the morning... knowing he does a half@$$ed job every day. Its very sad...when I think of all the people who have trusted him.

Sorry... just needed to VENT ... makes me very upset.

MsCurisous, you expressed very well the feeling one gets when treated so poorly. Many doctors whether from ignorance, not wanting to get to involved or figuring we would not understand take this route with there patients. It is very frustrating to be treated in such a manner. Walking with ones feet from their practice and not letting them know they have been fired is maybe the most appropriate. Just before I read your post I was checking on the background of a doctor on angieslist.com. I saw the name of a doctor that had been snippy with me. I looked at the write ups on this doctor by others. Lo and behold several had written about the same snippiness and the one way dictatorial conversations. So if this is any consolation on your treatment by your doctor, most likely many patients will vote the same way you have and fire this doctor by just not coming back to their practice. Glad you have a better doctor to see. Keep us updated.

[MsCurious]

  On 4/3/2011 at 1:49 AM, Igg postive said:

MsCurisous, you expressed very well the feeling one gets when treated so poorly. Many doctors whether from ignorance, not wanting to get to involved or figuring we would not understand take this route with there patients. It is very frustrating to be treated in such a manner. Walking with ones feet from their practice and not letting them know they have been fired is maybe the most appropriate. Just before I read your post I was checking on the background of a doctor on angieslist.com. I saw the name of a doctor that had been snippy with me. I looked at the write ups on this doctor by others. Lo and behold several had written about the same snippiness and the one way dictatorial conversations. So if this is any consolation on your treatment by your doctor, most likely many patients will vote the same way you have and fire this doctor by just not coming back to their practice. Glad you have a better doctor to see. Keep us updated.

Thanks Igg. It's been such a long haul for me, with this testing, and finding new doc, etc. First blood test was January 25, and I don't have my endo/biopsy until April 11. Today was an exceptionally bad day for me. One of those days... the intolerance is really rearing its ugly head in a big way. Some days are not so bad but we had pasta (intentionally) two nights in a row and I'm really suffering for it in a big way. It really makes the waiting so difficult, but again, just reading other peoples stories, gives me comfort that it will soon be over. The minute I'm done testing I'm gluten-free and I can't wait to feel better. We eat fairly gluten light, just naturally, so I'm trying to really step it up a bit before the biopsy. Did you ever get your results yet? I lost track! Thanks for the note... that was nice of you to take the time to write.

[cassP]

  On 4/2/2011 at 4:00 PM, nuttmegs17 said:

I'm with you - my new Doc blew off my celiac blood test when they failed to give a number and instead just said negative. He said, unless it's zero, if you have ANY antibodies present, you should consider yourself gluten intolerant...it would be like saying you are not pregnant when you take a pregnancy test - you either are pregnant or you are not....you can't be just a little bit pregnant. Seriously, I will stress to friends and family that they know and study and lab results based on what I have learned on this journey.

i was thinking this exact same thing- concerning all the antibodies involved with the Celiac panel, and the thyroid antibodies... why is there a range of how many antibodies is ok???? is that because we're all so sick- that they have to grade us on a curve? or allow a small amount of antibodies to be normal?

when they test for HIV- do they have a range for that too??

[Igg postive]

  On 4/3/2011 at 3:53 AM, MsCurious said:

Thanks Igg. It's been such a long haul for me, with this testing, and finding new doc, etc. First blood test was January 25, and I don't have my endo/biopsy until April 11. Today was an exceptionally bad day for me. One of those days... the intolerance is really rearing its ugly head in a big way. Some days are not so bad but we had pasta (intentionally) two nights in a row and I'm really suffering for it in a big way. It really makes the waiting so difficult, but again, just reading other peoples stories, gives me comfort that it will soon be over. The minute I'm done testing I'm gluten-free and I can't wait to feel better. We eat fairly gluten light, just naturally, so I'm trying to really step it up a bit before the biopsy. Did you ever get your results yet? I lost track! Thanks for the note... that was nice of you to take the time to write.

I can say I know what you are going through. I was just about to jump out of my skin until all my tests were done. Glad it is over. My biopsy was negative but I have the positive celiac blood panel. I am on my way to being a celiac but have gluten intolerance - which I hope is little better than full blow celiac disease. I have been on the diet for several weeks now and feel much better.

I think your decision to go on the gluten-free diet is wise. If the diet does not improve your symptoms you will know. My problem is having the patience for all my symptoms to go away on the diet. They are improving greatly but it takes time on the diet. I was talking to a dietician and another celiac and they said it takes months. The other thing is to free up your schedule for the first several weeks of the diet. Don