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Mon, 18 Nov 1996 12:18:09 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>
 
Linda,
I'm sorry your father is suffering as much as I did until the dermatologist
finally biopsied my serum blisters as DH and put me on Dapsone, which was a
miracle.  It cleared up all those bleeding sores in a few days!  I had them
anywhere there was pressure--feet, ankles, elbows, pelvic bones you sit on,
knees---horrible things.  The GF diet if it has gone on a long time simply
alone doesn't always clear them up.  I have been on a Dapsone prescription 3
years, now down to 25mg daily from my initial 75 mg which is the
maximum--used the first month.  The down side to this medication is a
possible side effect of anemia, but blood tests monthly while on the high
dosage showed I had no problem and 6 month tests as I decreased dosage for 2
years also showed no problem with anemia.  The other downside is the
difficulty in quitting this medication altogether.  Sometimes can take 3-5
years to get off it totally even with 100% GF diet.
 
I would also suggest that you purchase Bette Hagman's book More from the
Gluten-Free Gourmet, published by Henry Holt & Co., NY,  which besides a
thorough discussion of DH/CD and a list of hidden glutens in foods, has the
most wonderful recipes which enabled me to substitute her GF flour in my
family's favorite recipes and accomplish such things as "mock" oatmeal
cookies, key lime pie, and decent bread.  I only cook GF for my family after
the grieving process of denial, anger, and finally acceptance of my genetic
cruel disease.  I decided if it wasn't good enough for my family to eat, it
wasn't good enough for me.  With that challenge--I live well and no longer
fight it.  Even when eating out or buying grocery food your father has the
right to know what's in his food.  Call the manufacturer, talk with the
cook/chef.  NEVER eat gluten.  While our DH manifests itself differently than
other celiacs--my understanding is that it IS the same disease and will cause
the same damage to your intestines!  If you cannot find a Gluten Support
Group in your area, which I've no idea where you are, join the Seattle group
in Bette's book--we have members everywhere and publish a large, brand-name
specific, newsletter which has a great deal of current medical info in it.
 GIG, PO Box 23053, Seattle, WA 98102-0353.   We welcome anyone to our
organization.  If you need products, I recommend, calling Ener-G Foods, in
Seattle at 1-800-331-5222.  They have many GF mixes, products, and supplies.
 Another wonderful company started by a gourmet cook who was forced to learn
to cook GF is the Gluten-Free Pantry whose e-mail address is
[log in to unmask]  They are in Connecticut. Tell your dad to hang in
there, it will get better and he can, as I do, lead a "normal" life
again--I've even traveled to Europe and done hiking trips with complete
control of my GF diet.
 
*ps--Iodine tends to aggravate DH--have medical data on this--get rid of his
iodized salt and avoid sea salt in products and seaweed (nori), and
carragheenan (sp?) products.
 
Living Well and GF
Olympia, WA

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