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dh derm rash

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7 replies to this topic

#1 texas flood

 
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Posted 02 January 2013 - 01:34 PM

I have been seeing my family doctor about my rashes for the last few months. All he has told me so far is it's a food allergy and he gave me the DexPak -13 day dose which helped. But of course the intense rash came back right after I stopped taking it. From the pictures I've seen all over the internet and on here, and the descriptions, I am convinced I am having a reaction to gluten.

Is the DH test something any doctor can do, or do I need to see a specialist? I don't want to waste my time tomorrow if he's just going to send me to another doctor. My insurance also does not pay for allergy testing - but I take that as the usual skin prick tests, and not a blood test. Is this correct?
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#2 mushroom

 
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Posted 02 January 2013 - 02:28 PM

If you want to have a shave biopsy of a suspected DH area, you really need a dermatologist, and one who knows something about celiac and DH, because the biopsy is not taken of the lesion but of the clear skin immediately adjacent to a lesion. So many doctors do not take the biopsy sample correctly beause they don't know any better.
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Soy free March 2008
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Citric acid free June 2009
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#3 squirmingitch

 
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Posted 02 January 2013 - 05:19 PM

Yup. A dh punch biopsy is what you need. And a derm who knows what the heck they're doing. AND DO NOT GO GLUTEN FREE OR GLUTEN LIGHT UNTIL THE BIOPSY IS DONE & YOU HAVE THE RESULTS BACK & KNOW THE DERM DID IT RIGHT!
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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.

 


#4 a1956chill

 
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Posted 03 January 2013 - 01:42 AM

a derm who knows what the heck they're doing.

yep, unfortunately rarer than one would imagine


I would expand on that by saying : the most important doctor a celiac ( especially if undiagnosed ) can have is a doctor that will leave his ego at the door and will actually pay attention to what you say .
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#5 sisterlynr

 
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Posted 03 January 2013 - 02:46 AM

My PCP referred me to a Dermatologist for a biopsy. I actually had 3 biopsies but they were from the lesion itself. After research she ordered Dapsone for me and due to the good response, along with Gluten free diet, agrees I do have DH Celiac.

I have a great PCP/Internal Med as a doctor! She has other patients with DH but told me I am the worst case she has ever seen.

Ask questions before you go see a doctor. Co-pays and such are way too expensive to waste on Derms that will not test you properly! Good Luck
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#6 texas flood

 
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Posted 03 January 2013 - 08:41 AM

I guess I have a good primary care pyscian. I told him I thought it was gluten and he agreed. So we did the celiac panel. I'll know the results in a day or two. He also referred to me an allergist if we need to go that route. He gave me a cortisone shot as well. Not really sure what that is gonna do, but we'll see!!
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#7 squirmingitch

 
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Posted 03 January 2013 - 10:44 AM

Ppl with dh generally test neg. on the celiac panel.

Read & learn:


Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/


Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/


Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195


DH Photobank:

http://www.celiac.co...-dh-photo-bank/



Newbie 101 for celiacs

http://www.celiac.co...ewbie-info-101/


Furthermore, if the doc didn't do the current FULL panel then you didn't get proper celiac blood testing. Here's the info.:


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
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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 texas flood

 
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Posted 04 January 2013 - 07:31 AM

I have been reading on a lot on here and learning. Thank you.
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