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Dermatitis Herpetiformis ( And Other Rashes)


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16 replies to this topic

#16 sisterlynr

 
sisterlynr

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Posted 26 March 2013 - 08:18 AM

Chefwife8

 

In all reality . . . I'm not sure it matters to have a definite diagnosis of DH.  It is just marked on your medical charts and who is that helping?   I guess it does matter to be sure it isn't another skin disease.

 

I think the doctor and/or test being positive about DH is for peace of mind.  It sure doesn't help the itch, sting or burn.  I have been to 5 dermatologist with 6 biopsies before the head of the university of dermatology took 2 biopsies correctly.  Has to be next to a lesion with direct immunofluorescence to see IgA . I had been gluten-free and on Dapsone for 5 months but he still took the biopsies.  He didn't think they would show DH but still took them.  Now my record with my PCP and this Dermatologist has charted Celiac DH.  

 

I still have the rash, burning, stinging and itch.  The healed lesions do turn a purple color and fade to white.  They also leave white circles like the pigmentation is gone.  I told this last Dermatologist, "It doesn't matter if the biopsy is positive, I know how the gluten-free diet and Dapsone has helped.  I came to you because my PCP wanted to be sure it wasn't T-cell Lymphoma as I am a NH Lymphoma (remission) patient."  BTW, only 1% of people with Celiac/DH develop NH Lymphoma, a serious complication of gluten enteropathy.  I've been sick a long time when a simple change of diet would have healed me.

 

You could ask for the biopsy to be done correctly but I'm pretty sure the steroids can affect the results.  I know I was told by one of the Derms that the topical steroids affected results.  If they can't get it right, go gluten free.  If you see positive results. . . that is all that matters, at least to me.  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~


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#17 squirmingitch

 
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Posted 01 April 2013 - 04:26 PM

And remember that dh can & all too often does still present for 2 yrs. or more after going gluten-free. When I first went gluten-free, my dh laid down almost completely & at times was gone for short periods but it can & does come back. So going gluten-free is no instant magic bullet.


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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.

 





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