How do I know my DH is healing?

[flabslapper]

Hello, I've been recently diagnosed with celiac disease, but my affliction is DH. I started getting the rash around February, was diagnosed in May, so I'm lucky it was a quick turn-around, so I've only really been gluten-free for a few weeks.

The information I can't seem to find on my own however is what DH looks like when it's heeling? I only ever find pictures of what it looks like when it's flared up, not when it's healing. 

I'm sure I'm also accidentally gluten-ing myself over the weekends, but I'm just really new to this obviously and adjusting has been a little tough.

Thanks for any advice / info you can give me; in a weird way I'm glad that if I was going to get anything, it's something that has a very supportive community and a wide variety of options and foods that i can still eat. Thanks again.

[squirmingitch]

DH is extremely sensitive to the tiniest little trace of cross contamination. It's imperative that you make sure you get a solid handle on those accidental weekend glutenings. You see, with dh, the antibodies deposit under the skin and they can lay there for long times. They can lay there dormant so to speak ~~ where you don't have an outbreak ~~ & then one day BOOM! they decide to go nuts on you. That's the most crazy, mind blowing, make you nuts thing about dh. With dh, you can have outbreaks when you're not eating gluten OR not have outbreaks when you're eating gluten. In other words, the rash comes & goes at will. It will make you nuts. You can't figure it out, you can't predict it.

I get that you want to know what it looks like when it's healing but I'm trying to let you know that even when the outbreak you're currently experiencing heals, that doesn't necessarily mean you will never get any more outbreaks. OK, for the short answer as to healing, it's kind of self evident. The lesions will scab & depending, you may scratch them back open again & this may happen several times & then one day it stops itching & the place(s) heal often leaving a purple coloration (sometimes white) that may fade to brown/tan & then eventually even that mark will go away. 

[flabslapper]

Actually that helps a lot squirmingitch, thank you so much for responding, that makes a lot of sense when you explain it that way, I've read that the rash can just flare up seemingly out of no where, so I've been eliminating everything I can think of, but it's so frustrating when my rash seems to be getting better and then it just flares up again the next week. 

I know I have a long way to go too, I've read it can take as long as 2 years - but it could be worse I know, I don't seem to have the gastro problems (not yet anyway)

Thanks again!

[squirmingitch]

You're so welcome! 

Honestly, this rash can truly make you think you're losing your mind. Yes, it can take years. It can take a LOT of years --- longer than 2, OR it can take only months. We can only speculate it has to do with how long you actually had celiac but didn't know it & assume that the longer you had it, the antibodies were building up under the skin. They take their sweet time going away too. 

BTW, most of us with dh tend to have fewer, milder gastro symptoms yet we still get the damage to our villi. 60% of the time we test negative on the celiac blood panel and that's because the antibodies are sitting under our skin. 

[flabslapper]

Yeah, I tested negative on the biopsy but all my bloodwork came back positive for celiac; I've been reading more forum posts too to try to get a better handle on it, like how iodine can make it worse, or how it's itchier at night, which is comforting to know a lot of people suffer the same way haha

[Victoria1234]

I can't recall how long mine took to go away, but it was too long! One day you'll notice it goes flat and purple, a bit like a bruise. Seems like it will stay that way forever as a scar. Then one day it's more skin colored, until it fades comepletely. Took a number of months for me, but I'm super pale.

Certain gluten-free certified foods, like cookies, made the itching, not the lesions, come back.... this happened for a year or two. But it would only last a day. That way I knew the foods that 20ppm was too much for my body. I was very sensitive. It's been 9 years since I went gluten-free and this never happens anymore.

[artistsl]

It takes weeks, maybe months. The first two pics are days after I stopped eating gluten. The last picture is one week after I stopped eating gluten. Neosporin seems to help alleviate the open wounds. I keep it wrapped in gauze since it's on my hand, to keep from geeked infected. Good luck! It took me about four months to get it to go away completely the first time I stopped eating gluten. 

[artistsl]

Sorry. I can't get the pictures to upload. If you are interested I can send them to your email. Since reading your post I got to thinking about handsoaps and lotions. I have no idea which brands do or do not contain gluten, but I tend to use Eucerin and Dove brands. Has anyone researched which brands to avoid and which can be considered go-to?

[flabslapper]

Victoria - Thanks for reply, man last night I was so itchy, and on a spot that hadn't been itchy for months! I'll keep an eye on gluten-free foods too

artistsl - My hand was itchy yesterday and I ended up putting some off-brand neosporin on and it did help, so I'm glad we both had the same idea haha. Also I can't believe I forgot about hand soap! I've checked my shower bar soap (Dove) but for some reason I completely forgot to check the hand soaps here and at work, thanks! Oh and I don't need to see the pictures, I think I'm getting a better handle on what my body is doing now, but thanks!

I've also stopped taking ibuprofin at night as a 'test' and I was itchy as hell like directly at midnight, but that might have been a coincidence so I'll keep going without that, and once a week I would put on that steroid cream I got from the dermatologist to help the really bad itching but I'm stopping that too.

Thanks again everyone, man am I glad this forum exists!

[squirmingitch]

You might want to be aware of higher iodine foods as well. For instance, noting if seafood makes the rash worse --- also carrageenan aka sea kelp aka sea weed & all the other names it goes by. Foods from the sea are very high in iodine. Iodine often makes the rash flare.

[flabslapper]

I have another question about DH and figured I'd keep it in my own thread: I'm trying to keep track of all the spots that I have a rash in, and was wondering if it's possible to have new breakouts if (to the best of my abilities) have not ingested gluten, do breakouts just happen or am I still getting gluten'd? 

I should say that I am in process of replacing a lot of the stuff in my kitchen and my bathroom but I live with my girlfriend so getting rid of suspect things is taking longer. Thanks!

[squirmingitch]

There's the rub. You don't know by judging how the rash acts ..... at least not for a while. The rash can present even when you are strict gluten-free. The rash can go away even if you're eating gluten. You see, the antibodies get deposited under the skin & just sit there like little grenades and those grenades have a mind of their own as to when they will go off. The only way to know you're not getting glutened FOR SURE is to MAKE SURE you're not getting any gluten cc from ANYWHERE. It's a real mind bender. 1st & I have said this 1,000 times ~~~~~ do NOT eat out; not with dh, not for a long, long time, not until you are sure all the little grenades are gone. Otherwise you're playing Russian roulette. DH is sensitive to the tiniest amount of gluten. Yeh, I know it crimps your style but if you want to meet friends or go out with family then BRING YOUR OWN FOOD, order a drink & enjoy the company. Do not eat anything anyone else prepares for you & that includes well meaning & entirely loving friends & family. They don't know all the rules. It will take ages for them to learn all the rules & if they get it wrong, you are the one to pay the price. 

Don't ever touch your mouth unless you've JUST washed your hands. 

[flabslapper]

Thanks again squirmingitch, in a way that makes me feel better, at least it might not be something I'm doing wrong, but I'm getting better at being more careful 

[squirmingitch]

You're welcome and I'm hoping you are one of the lucky ones whose rash resolves quickly. I have to say most do. Months, maybe a year but then some of us can go years.

[Maint]

On 22/06/2017 at 12:04 PM, flabslapper said:

Victoria - Thanks for reply, man last night I was so itchy, and on a spot that hadn't been itchy for months! I'll keep an eye on gluten-free foods too

artistsl - My hand was itchy yesterday and I ended up putting some off-brand neosporin on and it did help, so I'm glad we both had the same idea haha. Also I can't believe I forgot about hand soap! I've checked my shower bar soap (Dove) but for some reason I completely forgot to check the hand soaps here and at work, thanks! Oh and I don't need to see the pictures, I think I'm getting a better handle on what my body is doing now, but thanks!

I've also stopped taking ibuprofin at night as a 'test' and I was itchy as hell like directly at midnight, but that might have been a coincidence so I'll keep going without that, and once a week I would put on that steroid cream I got from the dermatologist to help the really bad itching but I'm stopping that too.

Thanks again everyone, man am I glad this forum exists!

Hi everyone and anyone who suffers from dh. I am at my wits end with it. Does anyone experience intense burning of the skin so much so that you cant bearing stand it.???

What a hideous condition . Tell me it will go and you can cope with cealiac and dh.

 

Love to all

 

Yvonne

 

[squirmingitch]

Well Yvonne, we're still alive, so proof that you can cope & the dh will eventually go away. Yes, the burning..... Many have complained about it. I had it. I think it burned the worst on/in my ears. Felt like they were on fire. Ice pack my dear, ice packs.