<<Disclaimer: Verify this information before applying it to your situation.>>
 
In the fall of '94, I was biopsy-diagnosed as having celiac disease.  My
diarrhea, gas, bloating, etc. improved dramatically as the gluten-free diet
kicked in.  Around the fall of '95, I developed an incredibly itchy skin
problem, which featured symmetrically-distributed lesions on my jaw line,
scalp, elbows, knees, and butt.  So far, I have been diagnosed as having
first rosacea (sp?), then, a staph infection, and most recently eczema. I
have been using two different corticosteroid preparations and clindamycin
(the latter on my scalp).  These seem to help the itchy feeling, but I keep
going through cycles of swelling and decreasing sore, itchy spots.  The
package insert indicates that the clindamycin sometimes has extremely
serious side effects.
 
 I have been reluctant to believe I could be among the 3-5% of celiac sprue
patients to also develop DH. I have been faithful to the GF diet. My
dermatologist thinks I don't have DH because I don't have "stinging" sores.
I would describe my sores/lesions as almost intolerably itchy, but not as
"stinging."  Does "intolerably itchy" qualify?  After subscribing to this
list a few weeks back, I read something that gave me the idea I may well
have DH.
 
  My gastroenterologist has agreed to look into the matter, though he says
he is unfamiliar with DH.  He says a skin biopsy may be in order. REQUEST
FOR HELP: Can anyone recommend some articles or whatever that give DH
diagnosis guidelines?  I dug out a CSA leaflet I got in l994 titled "D...
H...." that seems quite good.  This doctor says he will gladly read
anything on DH diagnosis that I can find.  I have an appointment with him
on Tuesday, May 28.
 
Also, I would appreciate advice from any listmembers who have DH,
especially who have both CD and DH. MY CSA leaflet says "dapsone" is
prescribed for DH, but may have side effects.  What are they like?
 
Finally, I was recently delighted to get a copy of the second edition of
the CSA COOPERATIVE GLUTEN-FREE COMMERCIAL PRODUCTS LISTING.  I loved the
first edition; the second looks even better. But, on page 1, I was advised
that DH patients should "consult their own personal physician for direction
concerning individualized needs and definition of the clinical gluten-free
diet."  I cited this line to my GI doctor; he didn't know what it meant.
My dermatologist's office manager told me if I had diet questions I should
see my primary care doctor. (!)  REQUEST FOR HELP: can anyone refer me to
any material giving details on this special DH diet idea?  My gut-level
feeling is that I am going to be diagnosed with DH, so may well need to
help one or more of my doctors get up to speed on this diet issue.
 
Logically, it would seem that DH would fall within a dermatologist's area
of expertise, but I get the impression that mine may never have seen a case
before. My hope is that through seeing BOTH specialists, I can get some
answers.
 
Thanks, Herb
 
HERB BOLZ  :)               *   Davis, California, USA
(personal views only)       *   (between Sacramento and San Francisco)
[log in to unmask]  *     ---city of bikes---