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Subject:
From:
"Terry A. Bruner" <[log in to unmask]>
Reply To:
Terry A. Bruner
Date:
Mon, 12 Jul 2004 19:22:12 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

 


THANK YOU TO EVERYONE WHO RESPONDED.  Here is a summary of the information I received.

----------------------------------------------------------------------------------------

The issue:  I was diagnosed with DH about 2 years ago.  Since that time I have very strictly adhered to a GF diet, have purchased many materials on the condition, and have done my own research.  While I have strictly adhered to the GF diet, I am still suffering occasional breakouts and the EXTREME ITCHING has not stopped in spite of being on dapsone.  Has anyone else had this problem?  The occasional breakouts I can handle, but the fact that this disease never stops itching, burning, and causing pain has me at my wits end!




Responders suggested that I look for other hidden sources of gluten in my diet. Some suggested hidden sources include: 

*iodine/iodized salt--iodine can cause inflammation of the IgA deposits
*Motrin
*sea salt
*seaweed products such as carrageen and other alginate stabilizers and emulsifiers
*cleaning products in the home
*iodine naturally occurring in seafood's
*make sure multivitamins don't have iodine in them
*detergent
*fabric softeners
*hand and body soaps
*shampoo/conditioner
*hair dye
*some pills use wheat/gluten in processing as fillers (I know personally that the thyroid medication
     and zyrtec the physicians gave me were not gf!) 
*nonsteroidal anti-flamatory agents like ibuprofen, naproxen, etc. often cause rash to worsen
   and itching to get worse
*lipstick
*be careful not to lick envelopes
*Ms. Roben's has gf soaps
*If you feed chickens or other livestock, be sure you don't feed them gluten grains
*Direct sunlight can sometimes trigger attacks
*Check additives for foods you purchase FREQUENTLY as recipes DO change!
*You may have other allergies, such as nuts, grain fed meats, cinnamon, pesticides
*Have you checked for a corn allergy/intolerance?
*Sometimes my severely dry skin is almost as bad as the DH
*Watch vinegars, red food colorings, and hair colorings
*Do you use Crest toothpaste?  It is NOT GF!


Responders suggested that it took more than 2 years for their immune systems to be quieted by the gf diet/dapsone.  One responder stated it took over 3 years for their system to respond to the dapsone, but it finally did.  Another said she sympathized, but felt that perhaps I just needed to "hang in there" a little longer to get results.  She said in her case, her Iguana was high and it took a long time to get it out of her system.  She said "it hangs in there in full until all of a sudden it will let up."    One responder stated he understands it is "normal" to have an occasional breakout even after being gf or on dapsone treatment.  One person said it took his body over 3 years to "purge" itself of the gluten.

One responder said she has to be very careful about cross-contamination.  She said she has to be careful at work that she doesn't sit at tables where cakes or cookies have been or she will break out on her elbows.  She says she also can't sit on grass or he legs/knees break out.  

Other responders suggested that I be SURE that the dermatologist I am seeing is VERY KNOWLEDGEABLE about DH.

Another said that for her family, the only thing that has helped is that they don't eat out, don't eat at homes of friends or family, and that they don't allow ANY GLUTEN in their household.  


Responders suggested that the following over the counter medications or other remedies have helped them:

*A&D diaper ointment
*ice packs on the worst affected areas
*homeopathic RHus Tox 30c  2 pills under the tongue alleviate the itching
*Vitamin B--GNC has a vitamin B complex which is gf
*Bactroban ointment
*cortisone cream
*herbs can be very soothing.  Native American herbal solutions can work wonders.
*cucumbers 
*Eurax
*heavy hand cream rubbed into the skin such as non-scented Lubriderm, almond oil, lanolin oil, and         bag balm
*zinc oxide topical cream 


Another responder said that stress and anxiety attacks cause severe reactions for her daughter.  She said her daughter literally looks at gluten and vomits.  

One woman said she has DH mostly on her head and by rinsing her hair with the hottest water she can stand does help

Two other hints responders came up with which seem very important:

1.  be sure your doctor monitors oxygen levels to the brain so you don't become oxygen starved and pass out;  2.  be sure you monitor carbon dioxide levels in your home/where you work as high levels of this can cause a chemical reaction in your body.  


In summary:  one responder said it very well:  "Sometimes seeing someone else's miseries can make our own seem a little lighter!"

-------------------------------------------------

Again, I thank everyone for their concern and caring.  I am doing a little better this week, and everyone's concern and caring has to have something to do with that!

I have changed from a very stressful job to one which is less stressful.  I think that over time that is going to help me a lot.


Terry
Galesburg, IL
USA

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