Replying To My Defensive Doctor's Upsetting Email

[basilicious]

As some of you know, I was previously under the impression that my blood test results were mixed, with a high IgG and a negative IgA.

Thanks to several of you on here, I realized that my blood test was positive for DGP IgG, which is accurate and highly specific to celiac. Based on this information, as well as the four out of five diagnosis method recently proposed (I was negative biopsy but have the DQ2 gene, have celiac symptoms and they resolve on a GFD) then that points to a celiac diagnosis. However, my gastroenterologist has been dismissive of my high IgG levels, and I believe it is because she thought it was anti-gliadin IgG, not DGP IgG. After coming to terms with this information myself, I finally wrote my doctor an email sharing the report recently published by Dr. Fasano and co. about the gluten spectrum. I quoted the following:

On page 4, under "Clinical presentations and diagnosis", the second paragraph states the following:

"Specific and sensitive serological tests are available as an initial test for celiac disease. Measurement of IgA antibodies to tTG (anti-tTG) is recommended for initial testing for celiac disease, while IgA anti-EMA is considered as a confirmatory test. More recently, deamidated gliadin peptides (DGP) antibodies (especially of the IgG class) have been introduced with sensitivity and specificity comparable to anti-tTG and anti-EMA, but with possibly a better performance in IgA-deficient subjects and in children younger than three years [22,23]."

Now, I contacted the lab that did my test, and they even faxed me a sheet stating that the test I received is the DGP IgG. However, my Dr. responded as follows:

"Thank you for the article. It has been well known for a long time that the most sensitive serologic test for the diagnosis of celiac sprue is anti-TTG IgA. However, as is mentioned in the very sentence you quoted, that when a person is IgA deficient or in children, this is not the best test and the deamidated anti-gliadin test may be the only test feasible. That being said, it is the newer generation of deamidated anti-gliadin IgG testing that is better and that is not what they use in commercial labs. Moreover, for adults who are not IgA deficient, it is not the most sensitive or specific test. It may be positive in many other conditions including an allergy which is not the same as celiac sprue. All this said, we will never know the answer to the question of whether or not you have celiac sprue, b/c you were on a gluten free diet when you were tested. I

[Gemini]

As some of you know, I was previously under the impression that my blood test results were mixed, with a high IgG and a negative IgA.

Thanks to several of you on here, I realized that my blood test was positive for DGP IgG, which is accurate and highly specific to celiac. Based on this information, as well as the four out of five diagnosis method recently proposed (I was negative biopsy but have the DQ2 gene, have celiac symptoms and they resolve on a GFD) then that points to a celiac diagnosis. However, my gastroenterologist has been dismissive of my high IgG levels, and I believe it is because she thought it was anti-gliadin IgG, not DGP IgG. After coming to terms with this information myself, I finally wrote my doctor an email sharing the report recently published by Dr. Fasano and co. about the gluten spectrum. I quoted the following:

On page 4, under "Clinical presentations and diagnosis", the second paragraph states the following:

"Specific and sensitive serological tests are available as an initial test for celiac disease. Measurement of IgA antibodies to tTG (anti-tTG) is recommended for initial testing for celiac disease, while IgA anti-EMA is considered as a confirmatory test. More recently, deamidated gliadin peptides (DGP) antibodies (especially of the IgG class) have been introduced with sensitivity and specificity comparable to anti-tTG and anti-EMA, but with possibly a better performance in IgA-deficient subjects and in children younger than three years [22,23]."

Now, I contacted the lab that did my test, and they even faxed me a sheet stating that the test I received is the DGP IgG. However, my Dr. responded as follows:

"Thank you for the article. It has been well known for a long time that the most sensitive serologic test for the diagnosis of celiac sprue is anti-TTG IgA. However, as is mentioned in the very sentence you quoted, that when a person is IgA deficient or in children, this is not the best test and the deamidated anti-gliadin test may be the only test feasible. That being said, it is the newer generation of deamidated anti-gliadin IgG testing that is better and that is not what they use in commercial labs. Moreover, for adults who are not IgA deficient, it is not the most sensitive or specific test. It may be positive in many other conditions including an allergy which is not the same as celiac sprue. All this said, we will never know the answer to the question of whether or not you have celiac sprue, b/c you were on a gluten free diet when you were tested. I

[basilicious]

Thanks so much, Gemini. Your validation means a lot, because it really does feel odd fighting for something that you don't even want!

I don't know how big of a deal it is if my doctor refuses a diagnosis, but at this point I just want her to know the information she is clearly lacking, for the sake of other patients. Then I will try to find a good doctor who is actually knowledgeable about this. I am so disillusioned now that I really don't want to see any doctors. However, it seems like there is some necessary follow-up associated with a formal celiac diagnosis (such as bone density testing and a note for gluten-free food in case of hospitalization) and I'm afraid of the potential risks of not having a definitive diagnosis. If anyone has any guidance about that too, I would be extremely interested. Again, thank you.

[basilicious]

A quick update:

While I still had the courage (but after the steam stopped coming out of my ears!), I replied to my doctor and respectfully pointed out her inaccuracies and inconsistencies regarding the IgG testing and gluten challenge guidance. I also asked for a diagnosis based on the research.

She replied really early this morning and had changed her tune. She apologized for one of her inaccuracies, ignored the others but said that "probably the next best step is for you to have a second opinion from a true expert in the field." Well duh! She recommended going to University of Maryland's celiac center or to Peter Green at Columbia and said that she would facilitate the sharing of my records. Since I'm in DC, I will look into the U of MD option and go from there.

Since so many have fought such horrible ignorance and arrogance on the part of their doctors, I am happy to at least see a doctor admit when she is out of her depth.

[mommida]

Kudos to you for actually trying to make a doctor learn about Celiac Disease.

She will always stay "out of her depth" because she needs to open her mind to learn about Celiac. No wonder doctors don't even test for Celiac, they don't even understand the tests or results. Maybe she could go work in a clinic to swab for strep throat? Hopefully she can get that right.

[basilicious]

Haha, I don't know mommida... this doc probably thinks the strep test isn't commercially available!

[mommida]

Dat be true!!!

[Bubba's Mom]

As some of you know, I was previously under the impression that my blood test results were mixed, with a high IgG and a negative IgA.

Thanks to several of you on here, I realized that my blood test was positive for DGP IgG, which is accurate and highly specific to celiac. Based on this information, as well as the four out of five diagnosis method recently proposed (I was negative biopsy but have the DQ2 gene, have celiac symptoms and they resolve on a GFD) then that points to a celiac diagnosis. However, my gastroenterologist has been dismissive of my high IgG levels, and I believe it is because she thought it was anti-gliadin IgG, not DGP IgG. After coming to terms with this information myself, I finally wrote my doctor an email sharing the report recently published by Dr. Fasano and co. about the gluten spectrum. I quoted the following:

On page 4, under "Clinical presentations and diagnosis", the second paragraph states the following:

"Specific and sensitive serological tests are available as an initial test for celiac disease. Measurement of IgA antibodies to tTG (anti-tTG) is recommended for initial testing for celiac disease, while IgA anti-EMA is considered as a confirmatory test. More recently, deamidated gliadin peptides (DGP) antibodies (especially of the IgG class) have been introduced with sensitivity and specificity comparable to anti-tTG and anti-EMA, but with possibly a better performance in IgA-deficient subjects and in children younger than three years [22,23]."

Now, I contacted the lab that did my test, and they even faxed me a sheet stating that the test I received is the DGP IgG. However, my Dr. responded as follows:

"Thank you for the article. It has been well known for a long time that the most sensitive serologic test for the diagnosis of celiac sprue is anti-TTG IgA. However, as is mentioned in the very sentence you quoted, that when a person is IgA deficient or in children, this is not the best test and the deamidated anti-gliadin test may be the only test feasible. That being said, it is the newer generation of deamidated anti-gliadin IgG testing that is better and that is not what they use in commercial labs. Moreover, for adults who are not IgA deficient, it is not the most sensitive or specific test. It may be positive in many other conditions including an allergy which is not the same as celiac sprue. All this said, we will never know the answer to the question of whether or not you have celiac sprue, b/c you were on a gluten free diet when you were tested. I

[basilicious]

Bubba's Mom, I paused when I read that part of her note that indicated we could "presume" I have it...but I really think she meant that I would just do the diet and not get a diagnosis.

As for how this exchange impacts my medical records, well you make an interesting point. I have tried to ensure that my notes are direct and respectful, so hopefully an objective doctor would see that I'm simply trying to have a fact-based discussion. I have really tried to avoid a confrontational tone. By the same token, I think it's important to document it if a doctor ignores the scientific evidence you share with them, and if she chooses or is obligated to put these emails in my file, then she will also be thoroughly documenting some glaring mistakes on her part.

I'm really sorry to hear that you had a bad doctor for your second opinion. And sometimes it probably just isn't worth the trouble of "writing the letter"...

[pricklypear1971]

Bubba's Mom, I paused when I read that part of her note that indicated we could "presume" I have it...but I really think she meant that I would just do the diet and not get a diagnosis.

As for how this exchange impacts my medical records, well you make an interesting point. I have tried to ensure that my notes are direct and respectful, so hopefully an objective doctor would see that I'm simply trying to have a fact-based discussion. I have really tried to avoid a confrontational tone. By the same token, I think it's important to document it if a doctor ignores the scientific evidence you share with them, and if she chooses or is obligated to put these emails in my file, then she will also be thoroughly documenting some glaring mistakes on her part.

I'm really sorry to hear that you had a bad doctor for your second opinion. And sometimes it probably just isn't worth the trouble of "writing the letter"...

It would be refreshing to see a doctor out something as accurate and factual as correspondence in a record. Alas, what ones of a certain nature will do is our something potentially offensive or damaging such as "hypochondriac", or "hysterical", or "ignores advice", or "uncooperative".

I told an urgent care doctor, who I saw last year about my DH (when we thought it may have gotten infected and my regular docs were unavailable) that steroids aren't an option, and if I take any more of them I'll end up in the hospital - which was and probably is true since my reaction got pretty severe and I was ordered OFF of them by my Derm and monitored by him daily because if the reaction. That turd, who literally wouldn't come near me because he thought I had MRSA, wrote that in quotes in my file - suggesting I was a nut job.

He rx'ed an antibiotic, which I was allergic to. From across the room.

[basilicious]

It would be refreshing to see a doctor out something as accurate and factual as correspondence in a record. Alas, what ones of a certain nature will do is our something potentially offensive or damaging such as "hypochondriac", or "hysterical", or "ignores advice", or "uncooperative".

I told an urgent care doctor, who I saw last year about my DH (when we thought it may have gotten infected and my regular docs were unavailable) that steroids aren't an option, and if I take any more of them I'll end up in the hospital - which was and probably is true since my reaction got pretty severe and I was ordered OFF of them by my Derm and monitored by him daily because if the reaction. That turd, who literally wouldn't come near me because he thought I had MRSA, wrote that in quotes in my file - suggesting I was a nut job.

He rx'ed an antibiotic, which I was allergic to. From across the room.

Ridiculous! That is so insulting in every way. So sorry you had to go through that...