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Subject:
DH/CD Relief, Hope, Success
From:
[log in to unmask][log in to unmask] 9703B 1355 18 20_Support group dinner20_Victor J. Samuel [log in to unmask], 11 Mar 1997 20:51:11 -0600612_- <<Disclaimer: Verify this information before applying it to your situation.>>

Folks- Anyone in the Omaha, NE area April 3 is welcome to join us for
a glutengf decongestant. We usually
just use a saline spary to give her some relief. Anybody know of any otc
or prescription products? Thanks, Barry51_18Nov199608:31:[log in to unmask] 9611D 128 13 17_Fantastic Falafel18_Mildred [log in to unmask], 19 Nov 1996 22:58:05 EST457_- <<Disclaimer: Verify this information before applying it to your situation.>>

I spoke with Joseph (consumer products) at Fantastic Foods 707-778-7801 (in
Petaluma, CA) in regards to their Falafil. The "soy sauce powder" contains
wheat. So one of my old pre-diagnosis favorites is now off limits. Sigh.
Do you know of any other brand of falafil that is gf? Incidentally, Joseph
is sending me their GF booklet. [...]45_19Nov199622:58:[log in to unmask] 9611D 142 43 22_Frustrations & Letters18_MRS JANET [log in to unmask], 20 Nov 1996 00:09:13 -0500569_- <<Disclaimer: Verify this information before applying it to your situation.>>

Dear friends,

I understand your feelings of frustration when the airlines publish
that they have gluten-free meals and the actual meal is certainly far
from gluten free; when manufacturers have 800 numbers to call for
information and they have no idea what gluten is or seem to not care
about the sources of nebulous ingredients, when we get misleading or
inconsistent messages from consumer hotlines, etc. I could go on and
on, of course. [...]41_20Nov199600:09:[log in to unmask] 9611D 186 19 19_Steve Veach Message12_Jesse [log in to unmask], 18 Nov 1996 15:16:28 -0500700_- <<Disclaimer: Verify this information before applying it to your situation.>>

We read somewhere, but can not find it so no vouch, that Advil was glutten
free. So far my wife has had no problem. The CSA Denver Chapter reports
that the following pharmaceutical companies will no longer market their
products as glutten free: Miles, Inc--McNeil
Consumer Products Co. which include Tylenol Immodium & Mylanta---Sandoz
Pharmaceutical Corp.---Warner-Welcome, Consumer Health Care. The problem
they say is that they do not know what their suppliers use in starch. I
agree with Steve, if we all call or write the pharmaceutical companies
inquiring about [...]39_18Nov199615:16:[log in to unmask] 9611D 206 14 9_BAD [log in to unmask], 18 Nov 1996 16:48:20 -0800587_- <<Disclaimer: Verify this information before applying it to your situation.>>

After spending most of today cleaning BAD BUGS--WORMS out of my pantry, I
thought it might be a good time to warn new members of the list as well
as the rest of you to watch for those critters. I always freeze my flour
first and watch for them in packaged food, but I must bring them home
from some store. They were very active in the flavored rice cakes--can
you believe they like those? I threw out a little money today. They
surely must be more common in "rice" [...]42_18Nov199616:48:[log in to unmask] 9611D 221 33 32_Quick ingredient response [log in to unmask], 20 Nov 1996 08:41:16 -0500436_- <<Disclaimer: Verify this information before applying it to your situation.>>

Just a quick note to all those who responded to my urgent request for
ingredient information concerning buckwheat and GDL.

This list is so great! I got about twenty responses that indeed helped me
provid
Date:
Mon, 18 Nov 1996 12:18:09 -0500
Content-Type:
text/plain
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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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