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ItchyMeredith

What Do Doctors Know?

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I had my first meeting with a GI doctor today and was sadly disappointed. I even got his name from The Gluten-Free Bible so I thought he would be really knowledgeable. I have only a few GI symptoms but I decided to go to him because my dermatologist said that he knows little about celiac. This GI doctor today told me that he knows little about DH. He then proceeds to prove how little he knows about DH by saying that


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Hi Meredith,

Sorry about the lack of knowledge on your doctors' part. <_< I don't blame you at all for being upset!

On page 52 of Dr. Peter Green's book--"Celiac Disease A Hidden Epidemic", he states (in bold print, I might add)

"If you have a skin biopsy and it is positive for dermatitis herpetiformis, you do not need to have an intestinal biopsy--you have a confirmed diagnosis of Celiac Disease."


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Wow, Patti, that is interesting. I have to give that one to my student, Kathy. She has her DH diagnosis, but the celiac diagnosis wasn't quite so clear. And now she is in denial and said several times "Oh, I don't have it so severe as you Stef." She was cheating on the diet before, I'm not sure, if she's still cheating anymore, but in restaurants, she still isn't as careful as she should be. I told her several times "Kathy, there is no severity level. Either you have it or you don't. You can't just be only a little bit pregnant... right?" Why is that so hard to understand by some people. I don't get it. I will print out what you said, Patti, and show it to her. Maybe we can look it up in this book.

Thanks for posting!


Stef

Next goals:

Results for 2011:

1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting

August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)

gluten-free since 07/21/2004

Shermans Dale, PA

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I'm reading Dangerous Grains and it also says (on p 75) that a skin biopsy of DH "offers another approach to obtaining an accurate diagnosis of celiac."

I had this biopsy- I read the results with my own eyes in black and white. I really don't think I should have to put my body through the damaging effects of the gluten challenge. Wait...reword that...I won't put my body through the gluten challenge.

These books weren't kidding when they said that doctors really aren't up to date with the new research!


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Meredith,

I don't have any advice, but just wanted to say sorry. It's amazing that there are still SO many doctor's that know very little to nothing about Celiac or DH. I am starting to feel better physically (still getting new rashes everyday) so I have decided I am not going to bother trying to get a biopsy. I mainly wanted this to show what kind of damage I has been done.

Take care, Stephanie


Positive for dermatitis herpetiformis via skin biopsy and blood tests 6/21/07

Gluten free since 6/25/07

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I had my first meeting with a GI doctor today and was sadly disappointed. I even got his name from The Gluten-Free Bible so I thought he would be really knowledgeable. I have only a few GI symptoms but I decided to go to him because my dermatologist said that he knows little about celiac. This GI doctor today told me that he knows little about DH. He then proceeds to prove how little he knows about DH by saying that

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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OMG! I had to add this recent event to round out this whole experience! He just called me back with the results from my blood test. He forgot who I was and gave me the results like he had never met me. Here is my exciting dramatazation:

Doc: I have the results from your bloodtest and it looks like the bloodtest shows that you have celiac disease.

Me: UH...Yeah...I know.

Doc: Now who first told you that you may have it? Why did you think you did in the first place? Have I met with you?

Me: We met on Friday. I have the skin biopsy that is positive for DH.

Doc: OH! I remember you! Well the good news is that your numbers are not that high. I would expect higher for someone consuming gluten.

Me: I'm not consuming gluten. I have been gluten free for a month.

Doc: Oh. Nevermind. This test means that you are not truly gluten free then. You need to carefully scrutinize everything you eat because you still have traces of gluten.

SIGH!

Is it so much to ask for a knowledgeable doctor who remembers you?


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Omg what a freak. Now are you sure he gave you your results lol. I so miss my old dr, he was supposed to retire when i found out i was pg for the first time. So once he knew i was pg, he put on hold for 9.5 months lol. When i was overdue, he did not sleep, he was so worried about me. Either he would call me or his wife every day to see how i was. Everytime his phone would ring in the middle of the night he would hope it was me, of course it never was so fianlly after 2 weeks of being overdue he is like we need to induce you, or he was going to be in the hospital for exhaustion. I still can call him when i have a problem, even tho he is not practicing anymore. I wish they made the new generation drs more like they made him.

Is this the only time you seen this dr. If it was i dont think i would be going back to him lol.

paula


gluten, casein and soy free

on low carb/low sugar diet

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OMG! I had to add this recent event to round out this whole experience! He just called me back with the results from my blood test. He forgot who I was and gave me the results like he had never met me. Here is my exciting dramatazation:

Doc: I have the results from your bloodtest and it looks like the bloodtest shows that you have celiac disease.

Me: UH...Yeah...I know.

Doc: Now who first told you that you may have it? Why did you think you did in the first place? Have I met with you?

Me: We met on Friday. I have the skin biopsy that is positive for DH.

Doc: OH! I remember you! Well the good news is that your numbers are not that high. I would expect higher for someone consuming gluten.

Me: I'm not consuming gluten. I have been gluten free for a month.

Doc: Oh. Nevermind. This test means that you are not truly gluten free then. You need to carefully scrutinize everything you eat because you still have traces of gluten.

SIGH!

Is it so much to ask for a knowledgeable doctor who remembers you?

LOL What a winner he is. Well at least you have a conclusive diagnosis and don't have to go through all kinds of nasty tests to get it. Oh well there are good doctors out there, they are just so darned hard to find.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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