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Confusion About Dh

cindylou7

By cindylou7
in Dermatitis Herpetiformis

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cindylou7 Apprentice
cindylou7
Posted

Does DH rash show up more when glutened. That's what it seems like to me, but I've read that outbreaks don't have to be gluten induced... I'm so confused!

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itchy Rookie
itchy
Posted

I don't blame you for being confused, but I don't think there are any easy answers.

Because DH is an auto immune disease it seems to be partly subject to circumstances in our body that we may not understand.

I think most times one will react within a short time or a few hours to a glutening, but there are exceptions. And I've had 'reversals' that didn't seem to be a result of any of the usual suspects-gluten, iodine, salycyclates or anything else identifiable. I just got worse.

But at times when I know I've been glutened my lesions will normally get extremely red and sting. New areas will develop 'pimples' that are extremely itchy and eventually become lesions, probably because I can't resist scratching them. Then as they heal they become very itchy.

But the good news is that when they subside I am normally no worse than previously.

As I have gotten better, the effect of small accidental glutenings has become temporary, to my great relief.

I hope that there is something in there of help.

eatmeat4good Enthusiast
eatmeat4good
Posted

The antibodies can remain in the skin for up to 2 years with flares being intermittent or ongoing depending on the individual. Some react for a few weeks and then the rash goes away, some never stop reacting. The only consistent thing is the rash which will not permanently stay in remission without eliminating gluten. Some people also need to limit iodine temporarily. And Dr. Green says sometimes flares can happen for no reason until the IgA antibodies are no longer active in the skin. It is confusing, but the key is gluten and for some people iodine also.

squirmingitch Veteran
squirmingitch
Posted

Yes, cindylou, dh rash shows up more when glutened but it is also true that dh outbreaks can happen even when you have not been glutened recently. You see, the antibodies are in your skin for years & each time you get glutened it lengthens the time that the antibodies will remain in your skin. So it's pertinent to be extremely vigilant with your diet.

I know it's confusing. Dh can come & go anytime it darn well pleases as long as the IgA is in your skin. When you get glutened it usually promotes a dh flare but it also causes those antibodies to linger that much longer in your skin.

I read a medical study where they concluded that with dh basically parts of our guts actually get into our skin. Ewwwwww!!!!! But true.

The only way to stop outbreaks is to go long enough w/o getting glutened for the IgA to get out of our skin & then make sure no more glutening takes place. How long that takes for each individual is different.

DH is just plain expert at torturing us.ph34r.gif

cindylou7 Apprentice
cindylou7
Posted
  • Author

Thank you for your replies, but I am still confused. I'd like to think I am an educated person, but this disease has me stumped! Just when I think I have a handle on it there is one more aspect. Ive had stomach issues for what seems like all of my life, but the rash just started about 6-7 years ago and while it is no where near as bad as some of the pictures that I have seen, it is still significantly unpleasant! My first doctor actually had me take the AIDS test twice to confirm that I did not have AIDS because the "shingles" kept reoccurring. I am so frustrated, I have a hard time understanding myself much less explaining to family and friends. It would be so much easier to say "I have a wheat allergy"...now that they understand!

eatmeat4good Enthusiast
eatmeat4good
Posted

You might be interested in the thread on DH that includes links to information. It was just started, hopefully it will help you.

squirmingitch Veteran
squirmingitch
Posted

cindylou, you're not alone in thinking this disease has you stumped! LOL! It has all of us stumped I think.rolleyes.giflaugh.giflaugh.gif

Let's see if I can explain this another way. When celiacs eat gluten the gluten is in their intestine & the body hates it so it sends antibodies to destroy the thing that is irritating it. The antibodies go wild & end up destroying the villi in the small intestine --- sort of like a bomb goes off to destroy Hitler's hideout but the bomb also destroys surrounding areas & that might be some peaceful farmers home & fields. But with dh the gut leaks some of the gluten which travels through our body & into our skin. So the antibodies go nuts & destroy our skin in an effort to destroy the gluten. Just exactly WHY the antibodies stop sometimes no one, not even the experts, have figured out yet. But stop they can from time to time & then it's like they wake up & go at it all over again. Heck, maybe they get tired just like we do & need to take a nap.laugh.giflaugh.giflaugh.gif However when we get glutened we WAKE them up & they are furious that their nap was interrupted & so they go NUTZ!!!!!!

Now, it takes years for all the gluten, therefore the antibodies to vacate our skin so for years we can go through this flare, lay down, flare, lay down cycle.

Does that sort of help to explain it better? I hope it does.

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ciamarie Rookie
ciamarie
Posted
Does DH rash show up more when glutened.
cindylou7 Apprentice
cindylou7
Posted
  • Author

Sorry about that empty posting...my computer has issues...I refuse to admit that any cyber error is mine, but I wanted to reply to Squirmingitch and say...

you made me laugh today, so thanks! your light-hearted take on this disease is uplifting! I sat in a business lunch today trying to decide if I wanted to admit my "problem" or eat whatever was presented to me. I chose to admit, but was met with blank stares. Even commercial restaraunts are questionable as the preparation is substandard at best. I live in a state where poor health and obesity is the norm and questioning food prep is unheard of so I teeter on the social scale between good health or being charged as a witch.

Today I chose good health and won!

squirmingitch Veteran
squirmingitch
Posted

Hmmmm.... might you be in Texas? My cousin lives in Texas & has told me they have the highest obesity rate in the nation.

Well, it's no matter really. The important thing is that you stood up for yourself & your health & I say

BULLY FOR YOU CINDYLOU!!!!!!!!

I am applauding your actions of this day! Keep up the crusade. Yes, I've been thinking about how you say they stare blankly at you & perhaps you ought to just tell them you are so allergic to wheat, barley & rye that it's like ppl who have anaphylactic reactions to peanuts. Course they might still stare at you blankly.unsure.gif Anna what??? Anna who??? Are you talking about that Anna Nicole girl???? She didn't have peanuts; that gal had coconuts!

All you can do is try. But stand your ground. I know you can. I'm doind a happy jig just knowing what you did today & how difficult that was to do. You go girl!biggrin.gif

cindylou7 Apprentice
cindylou7
Posted
  • Author

Worse...Oklahoma !!!

squirmingitch Veteran
squirmingitch
Posted

Ah! Ohhhhhh, you're right. laugh.giflaugh.giflaugh.gif My hubs was born in Ok. & his parents told him never to tell pll he was born in Ok.laugh.giflaugh.giflaugh.gif

He was only born there b/c his father was going to law school there after getting out of the service. He graduated & they left Ok. when hubs was less than 3 weeks old. They headed straight to Fl.

lovegrov Collaborator
lovegrov
Posted

I don't get DH when I get contaminated. And I had DH for more than 20 years.

richard

squirmingitch Veteran
squirmingitch
Posted

Well Richard that is a breath of fresh air to hear that! Did you ever get dh when you got contaminated? How long after you were off gluten did ALL your dh go away & stay away?

eatmeat4good Enthusiast
eatmeat4good
Posted

I don't get DH when I get contaminated. And I had DH for more than 20 years.

richard

Richard,

Do you mind sharing what symptoms you do get when you get contaminated?

Cindy Lou,

I'm an Okie too!

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