How long for DH rash to go away?

[TraceyK]

Hi everyone

 I am new here and still trying to get a diagnosis for the hideous rash that I have been living with for over a year but I have started to go gluten free while I wait and I am just wondering how long it takes for the rash to clear up once strictly gluten-free? It’s only been one week and so far I cannot tell any difference But I’m thinking maybe that’s too soon to know anything? Would love any and all input from you lovely people!

[squirmingitch]

There is no hard & fast answer. Everyone is different. Read a bunch of threads in this topic listing & you can see how much it varies.

[weebl]

I'm about to somewhat undo my progress, having to go back on gluten so that testing will register. But here's my very recent experience, starting from over a month ago, until today.

After about 48 hours of going gluten free, I began to notice the itching intensity subside. At this point in time, all itching still felt the same for me.

After about a week, the itching definitely was subsiding, but was still there. The rash patches began to get smaller.

Two weeks in and the patches are reducing even more visibly. At one point I think I have ingested gluten via cross contamination, and notice itching increase several hours after suspected consumption, but this subsides later.

By about the third week, thick DH plaques on my calves and ankles are very visibly reduced. One patch is only darkened skin.

Week five, and I have a couple of gluten experiences: airborne seemed to cause some additional itching and reappearance of some DH lumps that disappeared on one of my forearms. An accidental ingestion of gluten via an unknown bowl of chili (I should have known better, but was starved, and that was the only real food there), and by the next afternoon, I could feel new DH rash forming with intense itching. This is when I realized that the itch from an emerging DH eruption was distinctly different than the dry/damaged skin itching of the slowly subsiding DH rash. A couple of days later, I have mostly recovered from this incident. I also later realize that the severe itching and rash I had on the back of my neck hasn't been bothering me for some time, and the rash is mostly cleared up, except for darkened skin.

Now in week seven, and I have just taken pictures of my patches. They are very much clearer than before going gluten free. I took these pictures to document what will happen, as I just deliberately ate pizza to kick off my gluten challenge. Maybe my imagination, but I think I am beginning to feel itchier, and in areas where the DH had cleared up, and not on remaining damaged skin.

[squirmingitch]

You know you have to eat gluten every day for 12 weeks for testing don't you? That is for either the celiac blood panel or the dh biopsy. 60% of those with dh test negative on the blood panel. 

[razzle5150]

is there any one else that has the rash and dont have celiac.. I was told by 2 drs you dont have celiac.. Please help , this rash is horrible

[cyclinglady]

  On 12/18/2018 at 2:56 PM, razzle5150 said:

is there any one else that has the rash and dont have celiac.. I was told by 2 drs you dont have celiac.. Please help , this rash is horrible

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So, you do not have celiac disease.  I get that you and your doctors believe this and it could very well be true as 20% of DH sufferers do not have intestinal damage.    But no matter because the treatment for DH is a strict gluten free diet and possibly the use of Dapsone which has some very real risks and benefits of long term use.  

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

You have to be gluten free.  Dapsone alone may not work.  This sounds like you.  Are you gluten free?  Are you strict?  That means have you tried the Fasano diet?  This basically is eating only rice, meat, fish, veggies, and fruit.  Nothing processed.  No eating out.  It is worth trying for a few months.  

I am sorry if I sound callous, but we have repeatedly told you that you should be on a stric gluten free diet.  Do you need help with the diet?  We can definitely help you with that!  I am so sorry that you are still suffering from active DH.  What do your doctors say?  Can they refer you to a dietitian?  Sometimes having an outsider take a look at your diet can be helpful.  ?

Edited December 18, 2018 by cyclinglady

[Fundog]

I was told I don't have celiac, but I get "The Rash" whenever I eat even a trace amount of wheat.  At the very least , I can say without hesitation that wheat is not my friend, and I avoid it like poison.  I may not have celiac, but I must live as though I do.  Apparently, so should you.  

[Gmcd198]

I have had a terrible rash for almost 2 months even though stopping gluten for 6 weeks so far. I have seen a dermatologist and my biopsy didn’t say celiac just spongiotic dermatitis. But stopping gluten did stop the majority of the itching. But I still have terrible scars from the rash on almost my entire upper torso. Even after 1 month on a steroid cream my scars are still very visible. I will NEVER take the gluten challenge after the disfiguring rash this allergy caused.

[CeCe22]

  On 12/18/2018 at 2:56 PM, razzle5150 said:

is there any one else that has the rash and dont have celiac.. I was told by 2 drs you dont have celiac.. Please help , this rash is horrible

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I have DH but do not have celiac. My blood work came back that I was celiac but I had a scope done and my biopsy was normal. I started the gluten free diet in July 2021 and I still break out but it is not as itchy as before. I have a few clear days from time to time and then I break out again. I am sticking to the diet very strictly (very rare eating out). My dermatologist has me on doxycline because I could not take dapsone. Not sure it is helping any!

[Gmcd198]

  On 9/27/2021 at 1:53 AM, CeCe22 said:

I have DH but do not have celiac. My blood work came back that I was celiac but I had a scope done and my biopsy was normal. I started the gluten free diet in July 2021 and I still break out but it is not as itchy as before. I have a few clear days from time to time and then I break out again. I am sticking to the diet very strictly (very rare eating out). My dermatologist has me on doxycline because I could not take dapsone. Not sure it is helping any!

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Thanks for your response! I’m seeing my dermatologist in a few days. I’m hoping she has some solutions, being disfigured is horrible, I can’t even take my shirt off anymore 

[CeCe22]

  On 9/27/2021 at 1:57 AM, Gmcd198 said:

Thanks for your response! I’m seeing my dermatologist in a few days. I’m hoping she has some solutions, being disfigured is horrible, I can’t even take my shirt off anymore 

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Good luck to you. 

[ravenwoodglass]

  On 9/27/2021 at 1:53 AM, CeCe22 said:

I have DH but do not have celiac. My blood work came back that I was celiac but I had a scope done and my biopsy was normal. I started the gluten free diet in July 2021 and I still break out but it is not as itchy as before. I have a few clear days from time to time and then I break out again. I am sticking to the diet very strictly (very rare eating out). My dermatologist has me on doxycline because I could not take dapsone. Not sure it is helping any!

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If you do have DH you do have celiac. Celiac is an autoimmune disorder not strictly a GI one. In some the antibodies attack the skin and even the nervous system long before GI symptoms show up as more than a 'normal' annoyance. (Jumping up and down waving vigorously as I was one of those people) It can take a very long time for the antibodies to leave the skin and it takes very little to reactivate them. Do reduce the amount of iodine in your diet as that can trigger a flare in some with DH. Make sure that your med is gluten free and if generic the pharmacist needs to check with any maker.

[CeCe22]

  On 9/27/2021 at 8:33 AM, ravenwoodglass said:

If you do have DH you do have celiac. Celiac is an autoimmune disorder not strictly a GI one. In some the antibodies attack the skin and even the nervous system long before GI symptoms show up as more than a 'normal' annoyance. (Jumping up and down waving vigorously as I was one of those people) It can take a very long time for the antibodies to leave the skin and it takes very little to reactivate them. Do reduce the amount of iodine in your diet as that can trigger a flare in some with DH. Make sure that your med is gluten free and if generic the pharmacist needs to check with any maker.

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TY