Question For Those Of You That Have Dh That Is In Remission, Healed, Cleared....

[Alwayssomething]

When I went to my dermo he said that for at least two years I would have some outbreaks that would appear for no apparent reason and also that I may be hyper sensative to things for that time as well. My question is I seem to now be reacting to something else (probably Iodine since I also have Hoshimoto's, and research shows this too is an issue) does that two year mark start over every time I have an outbreak or flare? I just keep thinking oh great now I have to eliminate something else and start all over, then I will probably find out I have another intolerance (corn, soy) and then the process will then start over again.

I am considerably better since going gluten free and making sure all my heath and beauty products were gluten free as well, so I probably shouldn't complain, but I am tired of trying to figure this out all the time.

[squirmingitch]

Mine isn't in remission, healed, cleared YET. But I see what you're asking. And while other things may make you flare up like iodine & salicylates; those things aren't going to "start your clock back at day 1". Gluten is the enemy & I believe a glutening will set you back. Will it set you back to day 1? I don't think so --- not unless you got heavily glutened & it happened often. Or if you keep getting cc'd on a regular basis. Every time we get glutened or cc'd it is going to put IgA in our skin & that's where the rash comes from.

You're lucky that you have a good derm who understands this stuff. Don't be afraid to ask him questions like what you just asked here. Sounds like he's a good guy.

And just like your derm said --- we can have flare ups for no reason or trigger at all until all that IgA gets out of our skin.

I know, I'm with you sister, I'm sick of trying to figure this out all the time too. Always questioning -- why this flare? Too much iodine or too many sals or too much stress or is this one just a flare b/c that's what dh does.

[eatmeat4good]

Hi,

I am clear of DH now but I had it for 7 years and it took a year and a half to heal. I was constantly in the same confused state as you, it seemed it was always something..Love the name by the way! I agree with Squirming that your derm sounds knowledgeable about DH. I had to limit iodine, you can see Thyca.com for how to do that. I also noticed a direct flare with too many Salicylates. NSAIDS can make DH flare. Squirmy is right, gluten is the main enemy. The stinging and burning were much worse in the beginning of healing and being gluten free. Later flares were less severe and less painful. Now almost 2 years gluten free, I only notice a few tiny blisters in a variety of places where I never even had DH before, and it doesn't last very long. Like one or two weeks.

Does the two year count start over when you get a flare or get contaminated? No one knows but your skin....and he/she is not talking! Seriously no one can know how long it will take them to heal or how long the antibodies will remain active in their skin. IgA is the problem, but it isn't possible to know how much IgA you have left or how long you will remain actively flared or in remission.

Just do the best you can every day to be totally gluten free and to try to figure out your other sensitivities. I reacted to salicylates and iodine terribly while I was healing, but now I don't seem to react to them. So it does get better, even if it takes a long time. I don't want to discourage you by how long it took me to heal. There have been many others who healed in a matter of weeks or months. Good luck! And keep your Dermatologist!

[lovegrov]

I'm no expert but I'd say that for most people you're most definitely to restarting the two-year period. I know that when I'm contaminated enough to get sick or make the rare mistake, I'm NOWHERE near as ill as I was when I first went gluten-free.

[rosetapper23]

I know how you feel--I was glutened accidentally SIX MONTHS AGO, and my DH is still freshly blistering every single day. I can see that I'm getting fewer lesions, and they don't last as long, but I feel tortured! Now, I've had DH for 25 years, so I feel I can speak from experience on at least how MY DH works. When I used to be able to avoid all iodine, the DH lasted about two months after a glutening. However, because I take Armour Thyroid for Hashimoto's, there's always iodine in my system now. Because of that--and that alone--the blistering continues daily...and all I can do is wait until this bout burns itself out. I can see the light at the end of the tunnel, though. I do notice that if I eat at a restaurant that uses iodized salt, the blistering gets worse for a few days....and then it feels as though I'm starting all over. However, I believe this bout will be over in about a month. I've discovered that using emu oil at night is helping the lesions to heal faster.

The only advice I have for you is to avoid extra iodine at all costs--simply don't eat out for a while until the flare-up is over. It will take longer to heal because of your thyroid medication, and there's nothing you can do about that. Be patient--eventually, the flare-up will subside....and then you'll only have to be concerned with avoiding gluten.

[eeyorelvr]

Thank you so much each of you for the reassuring advise. I just hated the thought that this may go on forever!

Squirm: The derm does seem pretty knowledgable but ever once in awhile he says something that makes me wonder. He said if my rash continues then they will do a biopsy, I have been gluten free almost a year, a biopsy will not show them anything. So that has me concerned. Also my rash is a little different than most I see and hear about on here, and it was actually diagnosed from an allergist and my endo confirmed it. So sometimes when I go to the derm he thinks I am just having a "contact" reacion since I don't always blister. Today I have something going on in the same spots I always react but it looks like phriosis (sp?).

rose: do all thyroid meds have iodine in them? I take Synthroid, but I do remember that the one thing my endo said to me as I was leaving his office after my first visit "oh yeah, and don't believe all the iodine talk" I never asked what he meant by that, so maybe my synthroid is doing this to me?

[squirmingitch]

Okay. The derm is obviously off on some things then.

As far as Synthroid goes (my hubs takes Levothyroxine) --- if we want to get really technical --- iodine is not added to the medication but rather that the hormone itself contains iodine. So, in short YES, there is iodine in there. I called a pharmacist to ask if there was iodine in it -- actually I called 2. 1 didn't know & the other said no.

And here I will quote what I learned from Skylark:

The iodine in T4 is covalently bound & wouldn't bother dh but as your body metabolizes T4 (4 iodine atoms) to T3 (3 iodine atoms) & T2 (2 iodine atoms)it removes iodine atoms & those would be released into the bloodstream. It's a very small amount of iodine relative to eating something like seaweed but if you are hypersensitive it could be the problem.

[squirmingitch]

Also eeyorelver, You are right that a biopsy of dh for dh will not do anything but give a negative result when you have been gluten-free for a year. If it were me I would not allow him to do a biopsy for dh & here's why:

When it turns up negative then he will (in his mind) confirm that you do not have dh. You see? And you can refuse to let him do it. You have that right by law.

AND the iodine connection IS real. If you want I can find the medical texts which say that but it will take me some time b/c I don't have all my bookmarks organized. I'm a bad, bad girl! Or you can take my word that I have seen more than one medical reference to the fact that iodine plays a part in keeping the dh fired up. Secondly, I just ran across something the other day that disputes what so many say --- even on this board --- that you can use sea salt. NO you shouldn't. Sea salt DOES contain iodine!!! Just use plain non iodized salt. Oh! Now I remember where I read that! It was in thyca.org when you click on their low iodine diet link. It's in there in black & white.

[eatmeat4good]

Hey Squirmy!

Here is an article to back you up on the iodine connection!

https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

[Alwayssomething]

Squirm - oh I do believe that iodine plays a big role and I found out the hard way that sea salt was not good. I was eating these amazing chips called corn poppers and I keep breaking out, I thought it was corn, but I knew I could eat other corn things, then I realized they were Sea Salt corn poppers. No more for me But if you do stumble across that article I would love a copy just to add to my medical folder so that I have it as ammo

No biopsy for the DH, I am stumped sometimes though because mine so often doesn't look like everyone else's. But I can follow my symptoms whenever I get glutened to the rash being within a day and the neuro symptoms being on day three. I had my allergist do a RAST test to test if this was all just an allergy, but nope I am not allergic to anything he tested me for (to which I must have been visably upset because he said this is a good thing, and reminded me that and intolerance and allergy were not the same thing).

[squirmingitch]

Thanks eatmeat!

So, Alwayssomething, that link eatmeat will do it!

You know, that dh takes many, many forms? Go to the sticky at the top of this forum & you can read where all these forms were noted way back when. AND this same info. is being used today. I have seen it quoted word for word in several med. texts about dh although it is not noted often enough for my liking. Not everyone gets blisters. Not everyone presents the exact same way. And then too, there are "stages" of the dh depending (I believe) on the stage of your celiac disease.

You have seen how you react to gluten so trust yourself & your own body. No one knows you like YOU!

[eatmeat4good]

When I first suspected DH, I too, was confused because my rashes did not resemble the photo's in medical literature. However, later in the course of the disease, like several years later, the rash DID resemble the ones in the medical literature. Have you checked out the DH photo bank? Does your rash resemble anything there that people have suspected as DH? It seems from 2 years of reading descriptions here and looking at photos, that DH in it's less severe forms is not recognized as DH. That is a real problem for people trying to get diagnosed early when the rashes begin. I don't have a rash anymore so I can't post a picture, but I would encourage you to post a photo in the DH photo bank especially since you are diagnosed. It might help others.

[squirmingitch]

When I first suspected DH, I too, was confused because my rashes did not resemble the photo's in medical literature. However, later in the course of the disease, like several years later, the rash DID resemble the ones in the medical literature. Have you checked out the DH photo bank? Does your rash resemble anything there that people have suspected as DH? It seems from 2 years of reading descriptions here and looking at photos, that DH in it's less severe forms is not recognized as DH. That is a real problem for people trying to get diagnosed early when the rashes begin. I don't have a rash anymore so I can't post a picture, but I would encourage you to post a photo in the DH photo bank especially since you are diagnosed. It might help others.

I agree!

[Alwayssomething]

Thanks Squirm and Eatmeat - I have taken many pictures, but none of them seem to really show what is going on or do it justice so I kind of gave up, next time I will try again. My arms seem to break out fairly typical as well as my scalp, my face and neck break out a little different, but yes I have seen a picture or two that resemble mine (I might have to print that for ammo too )

Rose - thanks so much for the iodine information, it smacked me in the nose late last night as I realized that Saturday I just changed my dosage of Synthroid so maybe that is the cause of this flare. UGH!!!

Thanks again for all the information and the link you guys are wonderful!

On a different note: I am Alwayssomething as well as eeyorelvr, I didn't realize I had two different names one on my home computer and one on my work computer. Sorry if that was confusing when I responded as someone else.

[squirmingitch]

On a different note: I am Alwayssomething as well as eeyorelvr, I didn't realize I had two different names one on my home computer and one on my work computer. Sorry if that was confusing when I responded as someone else.

Ha-Ha! I wondered about that. I looked & then looked again. Then I sort of figured it out as I belong to a gardening site where the girl had the same thing going on recently so it came to my mind you might be both names.

[JNBunnie1]

If it helps, my DH rash doesn't look like anyone else's either. I never got blisters or big round bumps. Mostly just tiny bumps, red rash, crazy itching, no burning. More like the first day of a poison ivy rash. Maybe a bit like heat rash, or the rash people get from cats. Not hives though.