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Delay Time-- Last Question I Promise

Kopka

By Kopka
in Dermatitis Herpetiformis

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Kopka Rookie
Kopka
Posted

Please let me know if you have had this experience or know anything about it.

Both times I did a gluten challenge to see if the rash would come back after ingesting gluten it was around the 3rd week of eating gluten daily before the rash appeared. Most people say 24-48 hours? Could it be that after gong gluten free for some time, that the IgA needs to "build up" over time before a rash appears?

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ravenwoodglass Mentor
ravenwoodglass
Posted

That was my experience and I think for the reason you stated. When I first was diagnosed DH was the first indication I had been glutened. As time went by it became the last. After a few years I also will get just one or two small blisters rather than the large patches effected before. 

bartfull Rising Star
bartfull
Posted

Got no answer for you but I wanted to tell you NOT to make it your last question. Answering questions is what this board is all about. I've been here for three years plus, and I still ask questions. :)

BlessedMommy Rising Star
BlessedMommy
Posted

^I agree with the above! That's what the board is for, is sharing information and support. I've learned so much since I've been here! :)

squirmingitch Veteran
squirmingitch
Posted

Kopka, as to your question on delay time....... as I understand it from your previous posts, as yet you have not gone 100% gluten free. I believe you said 70% and then 80% for the last 6 months & each time, when you go back to eating 100% gluten, it's 3 or 4 weeks before the rash appears again. I'm not being snotty here but it's hard to put this into words that will not sound snarky so please don't misinterpret what I'm about to say. You can not say that the rash appears again after 3 or 4 weeks b/c you HAVE NOT as yet, been 100% gluten free. You could only say that IF you had been gluten free for a length of time. What it seems to me that is happening with you is that you may very well be celiac & began with the GI issues. What I have garnered from what has happened to *most* ppl in those cases where they begin as GI issue celiacs & then over time, progress into the rash (for those who are prone to get dh). Remember, the rash can come & go at will ANYTIME, EVEN while eating gluten. I would be worried that if you continue to eat gluten, you will, one day, have the mother of all break outs & then it will NOT go away quickly or easily. You need to get a dh biopsy but only after you have been off steroids (oral or topical) & eating a FULL gluten diet for 2 months. 

No, I don't have the links for you re: topical steroids & the rash & biopsy. My old computer died & I don't have all those links anymore. They are out there. If you wan them you will just have to hunt for them like I did.

If you've been doing any reading on here, you know that it's the very DEVIL getting a dh dx. Bad enough getting a celiac dx when you have gut issues but when you cross over to the dh rash; it's whole new ball game & it's the 9th inning, you're down by 1 & the bases are loaded & you have 2 strikes.

I hope you can get your dx.

Kopka Rookie
Kopka
Posted
  • Author

Kopka, as to your question on delay time....... as I understand it from your previous posts, as yet you have not gone 100% gluten free. I believe you said 70% and then 80% for the last 6 months & each time, when you go back to eating 100% gluten, it's 3 or 4 weeks before the rash appears again. I'm not being snotty here but it's hard to put this into words that will not sound snarky so please don't misinterpret what I'm about to say. You can not say that the rash appears again after 3 or 4 weeks b/c you HAVE NOT as yet, been 100% gluten free. You could only say that IF you had been gluten free for a length of time. What it seems to me that is happening with you is that you may very well be celiac & began with the GI issues. What I have garnered from what has happened to *most* ppl in those cases where they begin as GI issue celiacs & then over time, progress into the rash (for those who are prone to get dh). Remember, the rash can come & go at will ANYTIME, EVEN while eating gluten. I would be worried that if you continue to eat gluten, you will, one day, have the mother of all break outs & then it will NOT go away quickly or easily. You need to get a dh biopsy but only after you have been off steroids (oral or topical) & eating a FULL gluten diet for 2 months. 

No, I don't have the links for you re: topical steroids & the rash & biopsy. My old computer died & I don't have all those links anymore. They are out there. If you wan them you will just have to hunt for them like I did.

If you've been doing any reading on here, you know that it's the very DEVIL getting a dh dx. Bad enough getting a celiac dx when you have gut issues but when you cross over to the dh rash; it's whole new ball game & it's the 9th inning, you're down by 1 & the bases are loaded & you have 2 strikes.

I hope you can get your dx.

Yeah I def see what you're saying. What I mean by 80% gluten free is that in my every day I was gluten free but I would slip up if I was on vacation or at a party and had too much to drink, etc.. It s such a strange rash (whatever it is), the first time I got the rash it was on my elbows and itched like crazy but just went away before I even thought it could be gluten related. I didn't even know what celiac was, and the weird thing is that it hasn't appeared on my elbows again since then, only my thighs and butt.

I guess my real question was if the idea of the IgA needing to "build up" over time has any merit to it. I have an appointment at duke dermatology Wednesday with a doctor who has studied DH for 20 years so I know I will be in good hands. Just wish my rash was more prominent cause right now it's just a small spot on my thigh. Anyways, thanks for the insight and I will let you know what the doc says.

squirmingitch Veteran
squirmingitch
Posted

Yes, I think the IGA builds up over time but that's sort of a relative question & the answer is relative to the situation one is speaking of. 

I sort of didn't carry through with the rest of my thought before about the celiacs who began as GI issues & were even dx'd that way but then kept getting cross contamination or didn't take the diet seriously & as they kept getting glutened, they finally "crossed over" & began getting dh & their gi issues began to subside as the dh became more prominent. the more they got glutened, the more prominent the dh became. 

It's imperative when one has dh to be pristine in their diet & I mean PRISTINE! It can take soooooo long for the antibodies to get out of our skin that one slip & you can have dh that lasts for months or even years depending on the individual. Look, I've been rabid gluten-free for what? 2 yrs. 8 months the end of this month --- I STILL get itchies. I can go days without any & then again, I can go weeks with some here, some there, some mild, some moderate. I do think mine built up in my skin for years. then it began to make itself known, small, fleeting at first. I had very mild GI issues that I thought everyone has so had no clue. I kept eating gluten & the rash would come & go to varying milder degrees & then one day it hit me like a ton of bricks & didn't go away. 

It may one day appear on your elbows again.......or not. The thing to remember about this is that it's hard to nail down a pattern mostly b/c there isn't a pattern. You might think there is & just when you get confident in that then BOOM! the fricking dh throws all you thought you knew right out the window & you are left shaking your head in confusion.

DH is an infuriating thing!!!! 

 

Please let us know what the doc says & does. 

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