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Dermatitus Herpetaformus, celiac

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Old 10-21-2014, 09:27 AM   #1
ccardsr
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Default Dermatitus Herpetaformus, celiac

I am brand new here so here's my story.At 70,I developed DH,I was fortunate at that time to have a dermatologist as a good friend who diagnosed it using a biopsy and staining procedure he told me the insurance companies don't like to have done due to the cost to them.I was also told gluten is the culprit so avoid it by going on a gluten free diet and a prescription for a drug called Dapsone.This drug is used to neutralize the severe itching associated with DH and creates an ability for one to tolerate it until the leisons heal,without the Dapsone you cannot tolerate the itching. The Dapsone healed the itching and allowed me to function sort of normally without the gluten free diet,which I tried for awhile but quickly gave up on due to the complexity and not fully understanding the consequences.Big mistake! Since then have been diagnosed as a celiac and now seven years later,with all kinds of problems with neuropathy,gut aches,gas,bacterial overgrowth,cramps,and whatever else from the Dapsone,anemia,etc.I'm doing the gluten free diet and hope to get some relief.What prompted me to proceed with all this testing is that a year and a half ago I weighed 225,very strong and started to loose weight,I now weigh 135lbs.,have no desire to eat,exercise,or anything.I got a little encouragement from a neurologist that I have low b12,he put me on shots,so far they haven't helped with the shortness of breath,anyone have any ideas on that subject?Thanks,ccardsr
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Old 10-21-2014, 01:40 PM   #2
Kitt
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Welcome ccardsr.
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Old 10-22-2014, 07:18 AM   #3
glenntaj
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Default B12 deficiency --

--is quite common among celiacs, who may also malabsorb numerous other nutrients.

Fortunately, treatment is easy--I would recommend lifelong supplementation through the oral route of at least 1000mcg/day of an activated B12 such as methylcobalamin (not cyanocobalamin, as up to 30% of odler adults have problems with conversion of that form due to polymorphisms regarding methylation chemistry; since it's now cheap and easy to get the methylcobalamin form there's not reason to even take the cyanocobalamin form).

You can take even larger doses initially--up to 5000mcg/day if you want. The idea is to flood the system with B12 that can be passively absorbed at a small percentage of the dose, bypassing the gastric absorption mechanisms which are not working well. In time, stores of B12 will build back up. Make sure you take this on an empty stomach (at least two hours after or one hour before eating), as it is easy to interfere with this passive absorption if any fiber is around.

All celiacs should be blood tested for nutrient levels--including those like magnesium, copper and zinc that are not included in a standard chemistry panel.
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Old 03-25-2015, 03:57 AM   #4
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Dermatitis herpetiformis, is a hallmark skin manifestation of celiacs and gluten sensitivity. the lesions are usually found as painful,burning blisters on the forearms, of the elbows, in the trunk, in the buttocks. 10-20% of people get it.dapsone works by clearing the skin of the ANTIBODIES, it takes a few months though,
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Old 03-25-2015, 07:56 AM   #5
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Dapsone itself has been found to be linked to neuropathy:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921741/

We have a poster here on PN who has this presentation.
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