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Does This Look Familiar?


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#1 ameslaw84

 
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Posted 05 July 2012 - 11:15 AM

Hey everyone,

I am new to the forums and am learning a lot by reading all the topics. This section is one that interested me the most.

Over the past few years I would get a rash for a few weeks, it would itch like crazy, then go away. We weren't using anything new, so I just thought I had weird skin. I also started developing GI issues, that I just blew off.

Recently things have become bad though. I cannot eat anything without being sick, diarrhea for hours, stomach aches, it is horrible. Some days I eat as little as possible just to get through the day without numerous trips to the bathroom.

As the GI issues got worse, so did the rash. It is so bad that my husband cannot sleep next to me because it burns and itches from the heat. My doctor first thought it was Staph infection, I went on a few rounds of antibiotics and it cleared up. It was not contagious though, as my husband has to help me (I am wheelchair bound) and he never contracted it. I ended up with a new doctor and the rash has come back. He has no idea what it is. He gave me some steroid creme that is supposed to be the strongest, and while the coolness offers relief, it does not. I am constantly itchy and the doctor has no idea. He says it looks like an allergic reaction, but to what? He also has referred me to a GI doctor to see what my stomach issues could be, one thing he brought up was Celiac.

So I made my way to this forum and looked around and found this section...an itchy skin rash! I looked over pictures and the information and was in awe that other people had this! I have included pictures of some of my rash from earlier this year. Does this look like DH?


http://img.photobuck...84/DSC03161.jpg
http://img.photobuck...84/DSC03160.jpg
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#2 squirmingitch

 
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Posted 05 July 2012 - 12:12 PM

From everything you've said & the photos too, I would say it's a very good chance you have celiac disease.

THIS IS VERY IMPORTANT:

DO NOT STOP EATING GLUTEN UNTIL ALL TESTING HAS BEEN COMPLETED!
No temporary stopping, no gluten light, no "I'll eat a lot of gluten on the last few days before the test but until then be gluten free".

Actually, celiacs with dh tend to test neg. on the celiac panel & they tend to have patchier damage to the villi & therefore it's harder for us to get diagnosed. NOW, there IS a biopsy for dh & a dx of dh IS a dx of celiac. BUT the false neg. rate on the biopsy is 37% & that's when it's done correctly by a derm who really knows their stuff & has done many dh biopsies. You must STILL be eating gluten for the dh biopsy!

You also can get your Primary care doc to order the celiac panel blood work---- you don't have to wait for the GI to get that done.
Here is the current FULL celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The DGP test was added recently to the full panel.


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG


ALSO*********
If you have been on steriods orally or topically in the 2 months prior to skin biopsy then the test will turn up negative. If you've been on oral steroids in the 2 mo. prior to celiac panel OR endoscopy biopsy then you can have neg. results.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#3 rosetapper23

 
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Posted 05 July 2012 - 12:46 PM

Yes, to me it DOES look like DH, and the fact that you're also having gastro distress backs up the possibility that you have celiac.

Now, regarding the testing (and Squirmingitch, you're dear to me, but I don't agree with you on this one thing), if you can't see a gastro for some time because the referral process is slow, I would personally give up eating gluten to see if that's your problem. Unless there is a real reason for getting a definitive diagnosis, I can see no reason to continue to be tortured with DH and digestive issues. Testing is really only necessary for people who NEED a diagnosis, and then you have to remember that there's a high false-negative rate with the blood tests, the endoscopies, and the skin biopsies--especially in people who have the DH rash. So....unless you can be seen very soon, please stop eating gluten. And if you insist on eating gluten until you're tested, please stop eating gluten even if the tests come back negative....because then you'll have your answer.

We're in pretty much two camps here on the forum: keep eating gluten until you get tested, OR stop eating gluten and get your own ironclad answer without testing. Now, if a person doesn't have symptoms and thinks he/she might have celiac, that's another thing entirely--of course, they should get tested. However, if you're exhibiting symptoms that go away once you follow a gluten-free diet, what's the purpose in getting tested? Only you can make that decision.

By the way, once you go gluten free, also eliminate iodine from your diet for a few months in order to allow the DH to heal. Iodine can be found in iodized salt, salty snacks (chips, fries, crackers, popcorn, etc.), processed foods, seafood, asparagus, and some dairy products. Good luck to you!
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#4 Hornet

 
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Posted 05 July 2012 - 01:20 PM

Interesting. I am going to see Dr Leffler in Boston and have been gluten-free for a few months. They told me that if you have the genes it doesn't matter if you are eating gluten. Either you have it or you don't.
I agree about all the tests but the only one that I was told was changed by being gluten-free is the unreliable IGA (if thats thr correct name) which doesn't have much validity.
I am sorry you are having such a miserable time and hope you can find a specialist to sort this out.
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#5 squirmingitch

 
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Posted 05 July 2012 - 04:37 PM

Yes, to me it DOES look like DH, and the fact that you're also having gastro distress backs up the possibility that you have celiac.

Now, regarding the testing (and Squirmingitch, you're dear to me, but I don't agree with you on this one thing), if you can't see a gastro for some time because the referral process is slow, I would personally give up eating gluten to see if that's your problem. Unless there is a real reason for getting a definitive diagnosis, I can see no reason to continue to be tortured with DH and digestive issues. Testing is really only necessary for people who NEED a diagnosis, and then you have to remember that there's a high false-negative rate with the blood tests, the endoscopies, and the skin biopsies--especially in people who have the DH rash. So....unless you can be seen very soon, please stop eating gluten. And if you insist on eating gluten until you're tested, please stop eating gluten even if the tests come back negative....because then you'll have your answer.

We're in pretty much two camps here on the forum: keep eating gluten until you get tested, OR stop eating gluten and get your own ironclad answer without testing. Now, if a person doesn't have symptoms and thinks he/she might have celiac, that's another thing entirely--of course, they should get tested. However, if you're exhibiting symptoms that go away once you follow a gluten-free diet, what's the purpose in getting tested? Only you can make that decision.

By the way, once you go gluten free, also eliminate iodine from your diet for a few months in order to allow the DH to heal. Iodine can be found in iodized salt, salty snacks (chips, fries, crackers, popcorn, etc.), processed foods, seafood, asparagus, and some dairy products. Good luck to you!


Ah my dear rosie, we do not disagree & I'm sooooo glad you stepped in with that info. I was in a rush & had other commitments & forgot to say that if she wants to go gluten-free & not pursue an official dx then go for it! I wholeheartedly agree with what rosetapper has said.
Being self diagnosed myself, I would not push anyone with dh to prolong their suffering if they are not rabid for an official dx.

And here's a link for low iodine diet:
http://www.thyca.org/rai.htm#diet


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 redgouramis

 
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Posted 05 July 2012 - 05:08 PM

Hey everyone,

I am new to the forums and am learning a lot by reading all the topics. This section is one that interested me the most.

Over the past few years I would get a rash for a few weeks, it would itch like crazy, then go away. We weren't using anything new, so I just thought I had weird skin. I also started developing GI issues, that I just blew off.

Recently things have become bad though. I cannot eat anything without being sick, diarrhea for hours, stomach aches, it is horrible. Some days I eat as little as possible just to get through the day without numerous trips to the bathroom.

As the GI issues got worse, so did the rash. It is so bad that my husband cannot sleep next to me because it burns and itches from the heat. My doctor first thought it was Staph infection, I went on a few rounds of antibiotics and it cleared up. It was not contagious though, as my husband has to help me (I am wheelchair bound) and he never contracted it. I ended up with a new doctor and the rash has come back. He has no idea what it is. He gave me some steroid creme that is supposed to be the strongest, and while the coolness offers relief, it does not. I am constantly itchy and the doctor has no idea. He says it looks like an allergic reaction, but to what? He also has referred me to a GI doctor to see what my stomach issues could be, one thing he brought up was Celiac.

So I made my way to this forum and looked around and found this section...an itchy skin rash! I looked over pictures and the information and was in awe that other people had this! I have included pictures of some of my rash from earlier this year. Does this look like DH?


http://img.photobuck...84/DSC03161.jpg
http://img.photobuck...84/DSC03160.jpg


From everything you've said & the photos too, I would say it's a very good chance you have celiac disease.

THIS IS VERY IMPORTANT:

DO NOT STOP EATING GLUTEN UNTIL ALL TESTING HAS BEEN COMPLETED!
No temporary stopping, no gluten light, no "I'll eat a lot of gluten on the last few days before the test but until then be gluten free".

Actually, celiacs with dh tend to test neg. on the celiac panel & they tend to have patchier damage to the villi & therefore it's harder for us to get diagnosed. NOW, there IS a biopsy for dh & a dx of dh IS a dx of celiac. BUT the false neg. rate on the biopsy is 37% & that's when it's done correctly by a derm who really knows their stuff & has done many dh biopsies. You must STILL be eating gluten for the dh biopsy!

You also can get your Primary care doc to order the celiac panel blood work---- you don't have to wait for the GI to get that done.
Here is the current FULL celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The DGP test was added recently to the full panel.


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG


ALSO*********
If you have been on steriods orally or topically in the 2 months prior to skin biopsy then the test will turn up negative. If you've been on oral steroids in the 2 mo. prior to celiac panel OR endoscopy biopsy then you can have neg. results.


It looks like DH to me as well. It is VERY important to continue to eat gluten until you are diagnosed. I went off of gluten and had to have a chiropractor, specially trained in muscle testing,diagnose me 15 years later,once I found out about the procedure.
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#7 squirmingitch

 
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Posted 05 July 2012 - 05:53 PM

Interesting. I am going to see Dr Leffler in Boston and have been gluten-free for a few months. They told me that if you have the genes it doesn't matter if you are eating gluten. Either you have it or you don't.
I agree about all the tests but the only one that I was told was changed by being gluten-free is the unreliable IGA (if thats thr correct name) which doesn't have much validity.
I am sorry you are having such a miserable time and hope you can find a specialist to sort this out.


Well, Dr. Leffler's office told you wrong. I would hate to see you go through all that just to test negative b/c the doc doesn't know what he's talking about. see:
http://www.celiaccen...g/faq.asp#blood

http://www.mayoclini...our-appointment



  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 eatmeat4good

 
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Posted 05 July 2012 - 07:00 PM

You have two very perfect pictures of DH. I would bet my gluten free bread that you are a Celiac.
The descriptions of blisters with multiple excoriations from the painful itching...this is clearly evident from your pictures and from your descriptions.
Yours is on your knee...it can be anywhere...but the literature usually says it is on knees, elbows, and buttocks. Mine has been everywhere but these places so it took a long time to get diagnosed.

Your description of how miserable it is, the fact that it comes and goes, the fact that you have multiple other Celiac symptoms, the pain and the itch and the visible presentation are very indicative of DH.

Do you need a diagnosis from a Dr.?
That is your decision.
They can test the skin by biopsy. It isn't very reliable.
They can test the small intestine by biopsy. It isn't very reliable in those with DH.
You can go gluten free. But if you want testing...don't.
Just be aware that it can take months of gluten free and iodine limiting to heal the rash.
I had it for 8 years.
It took me a year and a half to heal it.
I got diagnosed backwards.
The dr. saw it had healed after all his prescriptions failed and I told him I was gluten free. Now he believes I am a DH Celiac.

Thank you for posting your pictures.
It helps others.
Hope you let us know what you decide.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates




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