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It Takes So Very Little...argh!

running-girl

By running-girl
in Dermatitis Herpetiformis

Recommended Posts

running-girl Rookie
running-girl
Posted

I have been gluten free for 6 weeks and my lesions were finally clearing. Though I still had a bunch of sores there were few that were "active".

Then I got a nasty cold and started to take some decongestants not even considering they would have gluten in them. Within 24 hours blisters began to appear on my hand. Then, last night, I mindlessly tested the pasta I was cooking for my kids. One spaghetti noodle and wham-mo - I'm a mess.

I woke up this morning with bumps all over my back and legs. ARGH! :angry:

I don't have a question - Just writing in to vent.

My family is sick of me talking about it.

Thanks!

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cahill Collaborator
cahill
Posted

I have been gluten free for 6 weeks and my lesions were finally clearing. Though I still had a bunch of sores there were few that were "active".

Then I got a nasty cold and started to take some decongestants not even considering they would have gluten in them. Within 24 hours blisters began to appear on my hand. Then, last night, I mindlessly tested the pasta I was cooking for my kids. One spaghetti noodle and wham-mo - I'm a mess.

I woke up this morning with bumps all over my back and legs. ARGH! :angry:

I don't have a question - Just writing in to vent.

My family is sick of me talking about it.

Thanks!

Im sorry :( ,, I also have very sensitive DH, God forbid that I put salt on my meal :wacko: ( I am very sensitive to the iodine )

Hope it clears for you soon :wub:

eatmeat4good Enthusiast
eatmeat4good
Posted

I am so sorry about the DH activation.

I am coming to the conclusion that any mistake will make me pay for about 6 weeks.

I used a teensy tinsy itty bit of sea salt on my food one time (like 10 grains of salt)and it reactivated the sores from the last time I ate shellfish in January.

It sucks.

They constantly seem to be healing then activate.

I'm right there with you both. <_<

running-girl Rookie
running-girl
Posted
  • Author

Thanks for the support. I know I shouldn't complain, many here have been dealing with this for a lot longer than I have. I'm just so surprised.

I don't seem to have the same sensitivity to iodine. I have limited it, but recently had some eggs and then some yogurt and they seem to be OK. I'll keep my fingers crossed. In the meantime I will try not to scratch. :)

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

I'm glad you posted this my son is only gluten free for three weeks and his rash is getting worse instead of better. But we did the gluten overload before his tests. Does it take a while before it all gets out of his system? I didn't realize how sensitive DH was and how little it takes to flare it up, so I guess because we are just learning it will take us a while to find all the "hidden" gluten. Thanks for venting or I wouldn't have know this :)

running-girl Rookie
running-girl
Posted
  • Author

Well my itchy friends, the verdict is in and my third biopsy was also negative for DH. I guess I don't have it. This leaves me itchy and without answers. The doctor has ordered a bunch of new blood tests but has no explanation for my rash....and I was so certain it was DH.

I had some bread last night and haven't noticed any response yet, so maybe he's right. At this point I have no choice but to trust in my dermatologist and hope he comes up with some answers.

ravenwoodglass Mentor
ravenwoodglass
Posted

Well my itchy friends, the verdict is in and my third biopsy was also negative for DH. I guess I don't have it. This leaves me itchy and without answers. The doctor has ordered a bunch of new blood tests but has no explanation for my rash....and I was so certain it was DH.

I had some bread last night and haven't noticed any response yet, so maybe he's right. At this point I have no choice but to trust in my dermatologist and hope he comes up with some answers.

Did he biopsy the lesions or the area next to them? Also I have heard that if you are gluten free the biopsies will be a false negative, have you been gluten free?

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running-girl Rookie
running-girl
Posted
  • Author

Two of the tests were of the lesions, the third of the skin adjacent. The third one was an immunioflouresence test. When I had that one I have been gluten free for only two weeks. Do you think that would have an impact on the test?

eatmeat4good Enthusiast
eatmeat4good
Posted

Wow Running Girl,

That is very interesting.

I know if you are gluten free, the tests can be negative just like intestinal biopsy, but I don't know if 2 weeks is enough to make you test negative.

I think some people have DH and do not test positive for it on any of the tests.

Just to keep in mind as you go through your testing.

It complicates things, but might be important for you to know.

Seems unlikely though, if you don't react to iodine.

I hope the dermatologist is able to figure it out for you.

I don't want you to be itchy anymore!

dilettantesteph Collaborator
dilettantesteph
Posted

It seems like there may be other skin conditions associated with gluten consumption. Maybe that's what you have.

Open Original Shared Link

running-girl Rookie
running-girl
Posted
  • Author

The true test will be to see how I react to eating gluten again. For the last two days I have reintroduced gluten. Tonight I notice a number of new blisters, but who knows what else could be causing it. My plan is to continue to eat gluten for a couple of weeks and then stop again and see if there is a difference.

The support I have found in this forum is truly moving. Thank you!

itchy Rookie
itchy
Posted

Running girl, I wouldn't assume at all that negative tests indicate that you don't have DH or celiac disease. There are just too many of us here who have had negative tests but quite clearly are celiac, with typical symptoms, and big improvements from avoiding gluten.

I think you are doing the right thing by monitoring carefully the results of your diet.

But it can be confusing, 98% of my lesions are dramatically better, but a couple of new small lesions have appeared in unexpected places which seem to be DH. There often isn't a strict cause and effect response that is easily observable.

  • 2 weeks later...
running-girl Rookie
running-girl
Posted
  • Author

I'm back. That little experiment didn't turn out very well. Two weeks of full gluten gluttony has convinced me. My skin has never been worse. So until my doctor comes up with a better idea I'm going to stay away from the stuff.

Now i have some catching up to do. This forum has been busy.

:)

cahill Collaborator
cahill
Posted

I'm back. That little experiment didn't turn out very well. Two weeks of full gluten gluttony has convinced me. My skin has never been worse. So until my doctor comes up with a better idea I'm going to stay away from the stuff.

Now i have some catching up to do. This forum has been busy.

:)

sorry your experiment didnt turn out very well,,, but at least now you know

Welcome Back :D

MikeyR Newbie
MikeyR
Posted

I have been gluten free for 6 weeks and my lesions were finally clearing. Though I still had a bunch of sores there were few that were "active".

Then I got a nasty cold and started to take some decongestants not even considering they would have gluten in them. Within 24 hours blisters began to appear on my hand. Then, last night, I mindlessly tested the pasta I was cooking for my kids. One spaghetti noodle and wham-mo - I'm a mess.

I woke up this morning with bumps all over my back and legs. ARGH! :angry:

I don't have a question - Just writing in to vent.

My family is sick of me talking about it.

Thanks!

Why don't you ask your doctor for a dapsone prescription? It COMPLETELY cleared me up. It also takes the burning and itching away...GONE!!! I took it daily for many years but now I only take it if I have an accident and get glutened. I can usually start to feel the familiar burning and redness on my elbows and butt if I ingest gluten, but since I ALWAYS have dapsone on hand I just take one and poof its gone. Hope this helps you...sounds like you are suffering way too much.

running-girl Rookie
running-girl
Posted
  • Author

I would love Dapsone, but my doctor still feels DH is not the culprit. He is sending me to a Rheumatologist for more tests. My ANA results came back high as well as recently getting Raynaud's he is suspecting Lupus.

DH would also result in a positive ANA test, wouldn't it?

I will continue to work with my doctors on this, but in the meantime I'm staying away from gluten and sea food.

thanks!

Brenda

rosetapper23 Explorer
rosetapper23
Posted

I just wanted to add one comment. When I first read your posting, what stood out to me was that you were cooking wheat noodles for your children. It's so easy to contaminate your own meal when you're making a meal with gluten right next to it...so I always just made gluten-free food for everyone in the house. My kids are grown now, and my son was diagnosed with celiac, so it made sense to make the entire household gluten free. My daughter refuses to get tested but has a lot of celiac symptoms. If you do indeed have celiac, feeding your kids a gluten-free diet would be a smart thing to do since one or more of them might also have celiac (with or without symptoms).

Oh, and if you want to keep yourself safe from contamination, you should NOT be tasting any sauces that have wheat noodles in them. The sauce itself has been contaminated with gluten.

eatmeat4good Enthusiast
eatmeat4good
Posted

I have DH and my ANA tests were negative. So not always! But sometimes...like everything with this disease.

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