Posted 07 October 2012 - 07:01 PM
After my recent negative biopsies on my arm, I am hesitant to see the dermatologist for fear they will take another needless chunk of skin. Only to have another negative result and this time right on my face!
Any chance this might be a different autoimmune disease with similar symptoms? I know I respond to a gluten-free diet in regard to my GI symptoms but maybe there is another explanation.
Posted 08 October 2012 - 09:01 AM
Posted 08 October 2012 - 09:18 AM
Those of us with dh can break out any time even though we are gluten free UNTIL all the antibodies get out of our skin. I'm experiencing that as we speak.
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.
Posted 08 October 2012 - 09:46 AM
Did the doc biopsy for herpes? I wouldn't trust it unless he did.
Have to agree with this. There is a reason DH is named dermatitis herpeformis. The lesions strongly resemble herpes lesions. Without testing your doctor wouldn't be able to tell the difference.
It can take some time for the antibodies to leave the skin. Limiting iodine is helpful for some of us. Also be sure that your shampoos, conditioners etc are all free of gluten ingredients if you haven't checked them already.
"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)
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