Could This Be DH?

[EssentialMama]

I have been dealing with an itchy rash that looks like DH and sounds like DH based on all the photos and descriptions I have seen and read. This started in January I think, but it was much less severe than now. After doing some reading, I took a Celiac blood test, which came back negative. Then I also went gluten-free, because I figured it was worth a try. I think I started noticing some improvement of the itching. At some point after that, I found out we had lice, which was causing an itchy scalp, but once we got through that, I still had the super itchy bumps on my back.

Once I found out that we had lice, I guessed that I had been wrong about it being DH, so I started eating gluten again. It has been a month or so since I have been eating gluten, and the rash has gotten worse and worse. So bad I'm scratching them to bleeding although trying not to, and it's spreading. It's spreading to more of my back, and a few on the front of my shoulder, a few on my belly, a few on one knee and my shin. It's not symmetrical. But it does look like the pictures I've seen of DH.

Two weeks ago I went to a dermatologist who agreed it could possibly be DH, but she had no idea. She did a biopsy and sent it off. Today I got the results, which according to her indicate that it's not DH. I am still skeptical though because she didn't do the immunofluorescence testing because she said it would have to be sent to a different lab. Also, she had prescribed triamcinolone ointment, which didn't seem to help. 

So now, she is unsure what it is but thinks it might be an allergic reaction to something I'm taking internally. I do take some supplements, so she recommended I completely stop them and see what happens. She also wants me to take prednisone. I'm skeptical about taking the prednisone because of side effects. 

I also forgot to mention that about a week ago I started going gluten-free again to see if that helps. I don't think it is making much or any difference yet. But at this point I want to keep going with it because again, I am desperate for relief. 

I am still deciding if I want to try the prednisone. 

And I'm questioning whether I really need to stop taking all the supplements. Most I have been taking way before this started or started taking them after this started, if that makes sense. 

I am thinking about getting a second opinion from another dermatologist. What I would like to know is if the lab results I have definitively show that it is not DH, or if it still might be. Is it possible to get a conclusive result without doing the immunofluorescence test?

I would really like to get the immunofluoresce test. Do you think that is a good idea? And do you know if there are any other skin conditions that really do look and seem just like DH? Any advice from those in the know about DH are much appreciated.

I of course do not want this to be DH. But I'd like to know for sure that it's not that, especially since it looks and seems just like it. 

[Scott Adams]

So the real question I have for you is do you need the official diagnosis to stay on a gluten-free diet? I ask this because you did go on the diet for a while and it seemed to help with your symptoms. In order to get an official diagnosis you would need to continue eating gluten for a while before getting the test, and your dermatologist would need to do it correctly, which didn't happen the first time.

Recovery from DH can take months after going gluten-free, and the rash can come back, in most cases, with even tiny amounts of gluten. 

It's really up to you to decide which direction to go, but most people with DH have a difficult time with symptoms and going gluten-free is the fastest and best path to relief. Prednisone is a powerful steroid that would only mask the symptoms, and not address the cause.

[EssentialMama]

On 6/26/2020 at 6:07 PM, Scott Adams said:

So the real question I have for you is do you need the official diagnosis to stay on a gluten-free diet? I ask this because you did go on the diet for a while and it seemed to help with your symptoms. In order to get an official diagnosis you would need to continue eating gluten for a while before getting the test, and your dermatologist would need to do it correctly, which didn't happen the first time.

Recovery from DH can take months after going gluten-free, and the rash can come back, in most cases, with even tiny amounts of gluten. 

It's really up to you to decide which direction to go, but most people with DH have a difficult time with symptoms and going gluten-free is the fastest and best path to relief. Prednisone is a powerful steroid that would only mask the symptoms, and not address the cause.

I really appreciate you taking the time to reply. I don't need an official diagnosis to go gluten-free. I'm still not eating gluten because I do think it might help. I'm not 100% sure that's what happened before, but I am guessing it might be, and if it's possible that staying gluten-free will help me with this, it's totally worth it, with or without a diagnosis.

I'm going to probably schedule an appointment with another dermatologist who specializes in DH, but if I start seeing improvement, I may cancel the appointment and just keep going with the gluten-free diet. I'd hate to have to start eating gluten again to try to get an accurate test result.

The only way I see myself going back on gluten is if I somehow find out that this is definitely NOT DH. Which so far I really don't know. And honestly, I still think it probably is.

I'm debating about whether or not to take the prednisone to try and help my current symptoms. I'm going to read more about how likely it is to help me feel better in the short-term and the risks of side effects. I'd rather not take it, but this rash is really bad, and it's so hard not to scratch it. 

[cyclinglady]

1 hour ago, EssentialMama said:

I really appreciate you taking the time to reply. I don't need an official diagnosis to go gluten-free. I'm still not eating gluten because I do think it might help. I'm not 100% sure that's what happened before, but I am guessing it might be, and if it's possible that staying gluten-free will help me with this, it's totally worth it, with or without a diagnosis.

I'm going to probably schedule an appointment with another dermatologist who specializes in DH, but if I start seeing improvement, I may cancel the appointment and just keep going with the gluten-free diet. I'd hate to have to start eating gluten again to try to get an accurate test result.

The only way I see myself going back on gluten is if I somehow find out that this is definitely NOT DH. Which so far I really don't know. And honestly, I still think it probably is.

I'm debating about whether or not to take the prednisone to try and help my current symptoms. I'm going to read more about how likely it is to help me feel better in the short-term and the risks of side effects. I'd rather not take it, but this rash is really bad, and it's so hard not to scratch it. 

Just know that steroids will impact the DH test results.