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Positive Dh Biopsies And Blood Tests - Do I Need Gi Biopsy?


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14 replies to this topic

#1 esammarie

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Posted 12 October 2009 - 02:22 PM

For those of you with DH, can you please help? I had two positive skin biopsies - first of lesional skin and then, because the first suggested DH, of peri-lesional skin by immunofluorescence. Came back with DH diagnosis. Had blood tests and they came back like this: 313 for T. Transg IGA. 79 for A-Gliadin IGG and 205 for A-Gliladin IGA; A-Endomysial AB = positive; Endomysial IGA GIV = 1:320. Doctors said that was clearly indication of celiac disease.

I went gluten-free for 10 days: the rash started to clear and I felt much better, though startled that this was what I have (it was the last think I expected. In fact, I never thought this rash of two years was anything more than an allergic reaction to something I couldn't define). But last week the GI doc said I had to go back on gluten and have endoscopy and biopsy of the small intestine. So I started intesting gluten again and I feel horrible.

Do I have to have the GI biopsy? Could I say no? Is there a good reason to go for this? I am getting depressed and sad, not to mention sick. Of course, the rash has reappeared and my gut is a mess. I don't want to devolve into depression. I'm thinking I could benefit from antidepressant medication just to get through this.

Please help!
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Happy to be alive
Diagnosed by skin biopsies with DH September 2009
Confirmed celiac disease by GI biopsy and all positive blood tests Oct. 09
Learning to be gluten-free - and healthy!

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#2 Franceen

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Posted 12 October 2009 - 02:53 PM

I was diagnosed with DH and Celiac by success of the Gluten Free Diet. I had amazing success, so much so that my allergist said that if I wanted the Endoscopy that would make the medical community happy, but because I had been gluten-free for 6 months it would be positive unless I ate a LOT of Gluten for a LONG time!
I went to the Gastroenterologist who was supposedly the best in the area and he was surprised to find out that there could be a link between DH and Celiac!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I never went back, I never got the test. If there was any damage to my villi then it is gone now since I've been obsessively gluten-free for 3 years or more.
My allergist said that's fine with her and I have the Celiac or Gluten Intolerance and DH documented in my medical record.
I don't know what's right for you, but read my signature block below!
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Franceen
Diagnosed DH by Allergist via gluten-free Diet Success
Gluten-free since Dec 2005
Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months
No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!


#3 Lisa16

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Posted 12 October 2009 - 03:03 PM

I too had positive bloodwork and dh. I also had a negative biopsy 8 years or so before the dh showed up. I was told the dh is a definitive diagnosis of celiac. They called it "celiac of the skin."

The biopsy is jsut to make old fashioned doctors happy. The DH alone is your diagnosis. And more progressive doctors will look at your bloodwork results and consider you a celiac (which you are.)

I do not believe it is worth the pain and expense of getting the biopsy done-- let alone the trauma of having to eat that crap again. You already know what is wrong. Save your money for gluten free food! And once you are gluten free again, the depression will probably go away too.

If there is one thing I have learned from having this disease, it is that there are times when Western medicine hits the wall. And this is one of those times. Doctors are terribly behind on this, but they will catch on one day. Don't worry about it-- 10 years from now somebody more enlightened will look at your record and will say, "oh, classic celiac."

Get out of the bathroom and enjoy your life again! Pitch the gluten.
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#4 esammarie

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Posted 12 October 2009 - 03:08 PM

I too had positive bloodwork and dh. I also had a negative biopsy 8 years or so before the dh showed up. I was told the dh is a definitive diagnosis of celiac. They called it "celiac of the skin."

The biopsy is jsut to make old fashioned doctors happy. The DH alone is your diagnosis. And more progressive doctors will look at your bloodwork results and consider you a celiac (which you are.)

I do not believe it is worth the pain and expense of getting the biopsy done-- let alone the trauma of having to eat that crap again. You already know what is wrong. Save your money for gluten free food! And once you are gluten free again, the depression will probably go away too.

If there is one thing I have learned from having this disease, it is that there are times when Western medicine hits the wall. And this is one of those times. Doctors are terribly behind on this, but they will catch on one day. Don't worry about it-- 10 years from now somebody more enlightened will look at your record and will say, "oh, classic celiac."

Get out of the bathroom and enjoy your life again! Pitch the gluten.

Thank you!!!! I know the small intestine biopsy can show nothing for folks with DH. It just seems silly to waste the money - especially now when there is a raging debate about health care reform and "over use" of "the system."

You are one of several people who have said the same thing. I just want to be well and happy. Thank you!
  • 0
Happy to be alive
Diagnosed by skin biopsies with DH September 2009
Confirmed celiac disease by GI biopsy and all positive blood tests Oct. 09
Learning to be gluten-free - and healthy!

#5 esammarie

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Posted 12 October 2009 - 03:37 PM

I was diagnosed with DH and Celiac by success of the Gluten Free Diet. I had amazing success, so much so that my allergist said that if I wanted the Endoscopy that would make the medical community happy, but because I had been gluten-free for 6 months it would be positive unless I ate a LOT of Gluten for a LONG time!
I went to the Gastroenterologist who was supposedly the best in the area and he was surprised to find out that there could be a link between DH and Celiac!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I never went back, I never got the test. If there was any damage to my villi then it is gone now since I've been obsessively gluten-free for 3 years or more.
My allergist said that's fine with her and I have the Celiac or Gluten Intolerance and DH documented in my medical record.
I don't know what's right for you, but read my signature block below!

thank you! I really appreciate your perspective and I am so sorry you had to suffer all of that. I am glad you are doing better!
  • 0
Happy to be alive
Diagnosed by skin biopsies with DH September 2009
Confirmed celiac disease by GI biopsy and all positive blood tests Oct. 09
Learning to be gluten-free - and healthy!

#6 ravenwoodglass

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Posted 12 October 2009 - 04:02 PM

You are already a diagnosed celiac if you have DH. I would skip the biopsy.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 angieInCA

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Posted 12 October 2009 - 06:58 PM

My blood tests came back in the negative to low positive range. My DH test was positive. I opted not to have the GI biopsy...no need. Positive DH test confirms Celiac Disease.
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Transplanted Southerner in Sunny So.Cal.
Misdiagnosed 47 years
Diagnosed Gluten Intollerent Aug. 22. '08
Blood Tests Weak Positive to Negative probably due to low Gluten intake for 8 weeks before testing.
Opted not to have Biopsy.
Positive DH testing Oct. 30,'08
Gluten free since Oct. 28, '08

Diagnosed with Fibromyalgia May 10,'13


#8 captaincrab55

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Posted 12 October 2009 - 10:27 PM

For those of you with DH, can you please help? I had two positive skin biopsies - first of lesional skin and then, because the first suggested DH, of peri-lesional skin by immunofluorescence. Came back with DH diagnosis. Had blood tests and they came back like this: 313 for T. Transg IGA. 79 for A-Gliadin IGG and 205 for A-Gliladin IGA; A-Endomysial AB = positive; Endomysial IGA GIV = 1:320. Doctors said that was clearly indication of celiac disease.

I went gluten-free for 10 days: the rash started to clear and I felt much better, though startled that this was what I have (it was the last think I expected. In fact, I never thought this rash of two years was anything more than an allergic reaction to something I couldn't define). But last week the GI doc said I had to go back on gluten and have endoscopy and biopsy of the small intestine. So I started intesting gluten again and I feel horrible.

Do I have to have the GI biopsy? Could I say no? Is there a good reason to go for this? I am getting depressed and sad, not to mention sick. Of course, the rash has reappeared and my gut is a mess. I don't want to devolve into depression. I'm thinking I could benefit from antidepressant medication just to get through this.

Please help!

IMO, An endoscopy should be done if you suffered with indigestion/reflux... I don't see a need for consuming gluten just to make a Doctor happy for him to have a positive biopsy.. As others have said, You've got it... Sounds like you need a new Doctor.

BTW, I'm looking for a new GI....
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I'm a New Man Without GLUTEN!

#9 Lisa16

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Posted 13 October 2009 - 05:56 AM

I thought about your question over night and the more I thought about it, the madder I got at your doctor. He is asking you for FOUR proofs. Why?

1. The bloodwork is enough by itself
2. The DH is enough by itself
3. The positive response to the diet is enough by itself

What possible justification could there be for an intestinal biopsy now? I think it is time to fire him.
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#10 esammarie

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Posted 13 October 2009 - 03:50 PM

I thought about your question over night and the more I thought about it, the madder I got at your doctor. He is asking you for FOUR proofs. Why?

1. The bloodwork is enough by itself
2. The DH is enough by itself
3. The positive response to the diet is enough by itself

What possible justification could there be for an intestinal biopsy now? I think it is time to fire him.

Thanks so much, to each and every one of you! I talked with the nurse practioner in the GI dept (I work for a major research university with a major healthcare system) and explained how I was feeling really sick - haven't been to work since last Wednesday because of the GI symptoms and the intensely itching rash and I am just feeling depressed by all of this. She said, "You saw Dr. So-and-So, right?" I replied, "No, I've never met the man. I saw you." I explained my concerns and she said I "have to have the biopsy. It's the only way to diagnose celiac disease." I replied, "Not according to the NIH (thanks to you all, I know this!)" I related the NIH advice and she said, "No. That's nice but you need the biopsy." I said, "I don't need it but I understand why you want it done. All I ask is for some help to get through it." Finally got an antidepressant to help with the wild mood dive. I will be fine.

At this point, I want to keep with the biopsy so I can tell the doctor to his face that this is not the way to handle patients and he might want to rethink his approach. My job is promote service learning, so that's what I am going to do!!! Serve, listen, and learn. It ain't just for students. :-)
  • 0
Happy to be alive
Diagnosed by skin biopsies with DH September 2009
Confirmed celiac disease by GI biopsy and all positive blood tests Oct. 09
Learning to be gluten-free - and healthy!

#11 ravenwoodglass

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Posted 14 October 2009 - 05:07 AM

At this point, I want to keep with the biopsy so I can tell the doctor to his face that this is not the way to handle patients and he might want to rethink his approach. My job is promote service learning, so that's what I am going to do!!! Serve, listen, and learn. It ain't just for students. :-)


IMHO you shouldn't need to go through a procedure and the risks involved to educate this doctor. I would insist on an appointment face to face with him and show him the literature from the NIH and other peer reviewed materials to educate him. Then I would find myself another doctor.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#12 esammarie

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Posted 19 October 2009 - 03:57 AM

IMHO you shouldn't need to go through a procedure and the risks involved to educate this doctor. I would insist on an appointment face to face with him and show him the literature from the NIH and other peer reviewed materials to educate him. Then I would find myself another doctor.


Thanks, friends, for all of your advice and support. I decided to have the endoscopic exam and I am glad I did because not only did it show "severe scalloping" and damage to the duodenum to confirm the celiac disease diagnosis, they also found a nasty throat infection and esophagitis resulting from the infection, which explains my difficulties swallowing. So now it's beyond a doubt I have celiac disease and I have meds for the throat infection. back on the gluten-free diet and am hoping this DH will get better soon!

Many thanks again!
  • 0
Happy to be alive
Diagnosed by skin biopsies with DH September 2009
Confirmed celiac disease by GI biopsy and all positive blood tests Oct. 09
Learning to be gluten-free - and healthy!

#13 Lisa16

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Posted 19 October 2009 - 05:50 AM

Well, now they have their four proofs.

Good luck with your recovery! May you soon be happier, healthier and much stronger.

Lisa
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#14 purrcep4

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Posted 21 October 2009 - 05:44 PM

I am new to this forum, this is my first post. I was just diagnosed with dermatitis Herpetiformis today by a new internist that I saw. Even before he saw the DH, he felt I was at high risk for celiac . I basically diagnosed myself after recent research and many misdiagnosis by a number of doctors.

I have been through a 2 year nightmare fighting severe symptoms everyday. They also did the blood test today, and are setting up an appt with the gastroenterologist for next week. I thought I could go back to being gluetin free, but after reading your post I guess not yet. :(

This forum has been sooo helpful. I would not have been nearly as well prepared for this appt if not for this site.

Thanks for all the info.

Annie
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#15 Carri Ninja

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Posted 19 February 2010 - 05:47 AM

For those of you with DH, can you please help? I had two positive skin biopsies - first of lesional skin and then, because the first suggested DH, of peri-lesional skin by immunofluorescence. Came back with DH diagnosis. Had blood tests and they came back like this: 313 for T. Transg IGA. 79 for A-Gliadin IGG and 205 for A-Gliladin IGA; A-Endomysial AB = positive; Endomysial IGA GIV = 1:320. Doctors said that was clearly indication of celiac disease.

I went gluten-free for 10 days: the rash started to clear and I felt much better, though startled that this was what I have (it was the last think I expected. In fact, I never thought this rash of two years was anything more than an allergic reaction to something I couldn't define). But last week the GI doc said I had to go back on gluten and have endoscopy and biopsy of the small intestine. So I started intesting gluten again and I feel horrible.

Do I have to have the GI biopsy? Could I say no? Is there a good reason to go for this? I am getting depressed and sad, not to mention sick. Of course, the rash has reappeared and my gut is a mess. I don't want to devolve into depression. I'm thinking I could benefit from antidepressant medication just to get through this.

Please help!


I have always had DH, and the drs could never tell me what it was. Went gluten free and found this forum. That's how I found out. I have been gluten-free for a year now, except for occasional cross contamination - maybe once every 4 mo. I have had a scope done recently without eating gluten and they were still able to give me a positive for celaic. I might just be a rare case? My Dr. told me that the elimination diet along with my heart issues stopping was good enough of a diagnosis for him. He wasn't going to ask that I continue risking my heath for it. I would suggest talking to your Dr. and explaining how horrible you feel. Maybe they can do a blood test now instead of making you wait. I know the blood tests aren't always accurate, but if you feel that bad there's a def. reaction.
Good luck and I hope you feel better.
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