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Purposely Glutened Myself

zippitty5

By zippitty5
in Dermatitis Herpetiformis

Recommended Posts

zippitty5 Newbie
zippitty5
Posted

Here's my story . . Rash first started in November 2011, first appt with derm in early January, derm gave me some ointment-no help, late January rash is much worse-crazy itchy, spread to back,arms, legs, elbows, belly, hips, and breasts, searched internet and suspected dh, early February went gluten free, 2nd appt with derm, did a biopsy, gave me clobex spray (helps) and some anti anxiety med (helps me sleep), 2 weeks later 3rd appt with derm, rash is improving, biopsy negative for dh, derm sends me home with refill for sprayand tells me to call if it gets worse. Yesterday, rash is bearable but still there, I have been gluten free since late January.

I decided to gluten myself because the family keeps saying it's not gluten. I also am not sure. I have an appt with my GP next week and I will linsist on blood work and allergy testing. I will continue to eat gluten this weekend,if rash gets worse I guess ihave my answer.

I guess I am doubting because the rash keeps moving. As it clears up on one part of my body, it shows up somewhere else, almost always symmetrical, but never in the same place twice.

just venting I guess. Am I crazy?

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ciamarie Rookie
ciamarie
Posted

No, you're not crazy. :)

Otherwise all I'd suggest is that if you've been gluten-free since January, then having blood work now would probably result in negative results. But it is a hopeful sign that the rash has been improving. And having it move, I believe, is not at all unusual at first. I had small outbreaks in various places for the first couple months or so after I started eating gluten-free. I believe I've read other reports of folks on here where their DH actually got worse for a short while, too. It is enough to make you question your sanity....

If you want blood work then you'd probably be want to be eating a full gluten diet for about 3 months or so first, and that might make you too miserable to live with the DH.

Di2011 Enthusiast
Di2011
Posted

Actually you probably are a bit crazy. If it is DH and you've got it coming and going all over the place like mine then how could you not be feeling a bit or a big bit crazy!! It started at my ankles and made its way up to the head so it was certainly baffling.

You'll need to be very very strict with your Gluten-Free diet.

Let us know how you go at the derm/GP.

eatmeat4good Enthusiast
eatmeat4good
Posted

Often DH biopsies negative.

Takes a long time to heal.

DH can occur anywhere on the body so it is not surprising that it is moving.

It also comes and goes.

Or it comes and stays.

You will have to be very strict on the gluten free and you may have to limit iodine to heal the rash completely.

Symmetrical too?

DH will make you crazy...but you are putting it all together so that is a good thing.

Gluten is awful and the rash is worse.

I hope you get off of gluten as soon as you can.

But if you were gluten free for very long, you have to eat it for 3 months to test accurately.

I would never be ablet to handle that.

mushroom Proficient
mushroom
Posted

If you have a really active DH lesion, and if you find a good dermatologist, you can get a skin biopsy done for DH. It has to be taken from the skin immediately adjacent to the lesion, and they have to do special staining to look for the IgA antibodies in the skin tissue - that's why you need a derm. who is familiar with the procedure. If that test is positive, you are celiac :o - no more gluten consumption necessary. When you had the previous biopsy, did he biopsy the adjacent skin or the lesion itself??

zippitty5 Newbie
zippitty5
Posted
  • Author

If you have a really active DH lesion, and if you find a good dermatologist, you can get a skin biopsy done for DH. It has to be taken from the skin immediately adjacent to the lesion, and they have to do special staining to look for the IgA antibodies in the skin tissue - that's why you need a derm. who is familiar with the procedure. If that test is positive, you are celiac :o - no more gluten consumption necessary. When you had the previous biopsy, did he biopsy the adjacent skin or the lesion itself??

First biopsy was of the lesion and adjacent. However, it was not a very fresh lesion. It cam back negative for dh. I have been eating gluten since Thursday, I seem to be getting a little itchier but not too bad.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Not crazy, but brave. I don't think I could do that to myself. But also, I suffer from vertigo and I have a feeling that may be a glutten reaction. I could handle the rash getting worse and intestinal issues (which I don't have, yet) but I cannot handle vertigo. I hope for your sake your experiment works and you are able to learn for sure if you indeed have dh.

My rash is like yours in that it is also symmetrical and new patches of it keep showing up. It is unbearable at times.

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Avalon451 Apprentice
Avalon451
Posted

My daughter's first DH biopsy was on a "not very fresh" lesion also, and was inconclusive. She redid the biopsy on a fresh lesion, and that one came back definitely DH. There's a high rate of inaccurately-done biopsies on DH, unfortunately.

Might as well have the blood test done, too-- see if anything shakes out.

Metoo Enthusiast
Metoo
Posted

Here's my story . . Rash first started in November 2011, first appt with derm in early January, derm gave me some ointment-no help, late January rash is much worse-crazy itchy, spread to back,arms, legs, elbows, belly, hips, and breasts, searched internet and suspected dh, early February went gluten free, 2nd appt with derm, did a biopsy, gave me clobex spray (helps) and some anti anxiety med (helps me sleep), 2 weeks later 3rd appt with derm, rash is improving, biopsy negative for dh, derm sends me home with refill for sprayand tells me to call if it gets worse. Yesterday, rash is bearable but still there, I have been gluten free since late January.

I decided to gluten myself because the family keeps saying it's not gluten. I also am not sure. I have an appt with my GP next week and I will linsist on blood work and allergy testing. I will continue to eat gluten this weekend,if rash gets worse I guess ihave my answer.

I guess I am doubting because the rash keeps moving. As it clears up on one part of my body, it shows up somewhere else, almost always symmetrical, but never in the same place twice.

just venting I guess. Am I crazy?

I only have 'the rash' in one spot, on my hand. It took me over 5 weeks to get my rash to heal after a glutening! It does seem to take a long time to get it to heal, and I also started avoiding eggs after 2 weeks.

itchy Rookie
itchy
Posted

Many of us have had the experience of having new DH areas appear while we were gluten free.

squirmingitch Veteran
squirmingitch
Posted

Yup. I'll second that emotion.sad.gif

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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