Itchy rash worse since being off gluten! Anyone else?

[Gael]

Hi all- I have suspected DH for a number of reasons for awhile now (VERY itchy symmetrical rash and a family history of others being diagnosed with celiac disease). I had a skin biopsy done and I am awaiting results. Since being off gluten for over 2 weeks now, my rash has gotten worse. I keep getting new outbreaks daily. I read from another forum that sometimes the skin gets worse as your body is ridding gluten…can anyone confirm this for me?! When you were diagnosed with DH and went gluten free, did your rash get worse before it got better?! Any insight would be appreciated!

[Scott Adams]

I had a minor case of DH that did improve in the weeks after I went gluten-free. I don't recall it getting worse unless I got gluten in my diet. Of course the main thing is to be sure that your diet is 100% gluten-free, because even tiny trace amounts could cause you issues. Eating at restaurants, for example, could lead to contamination and flare ups.

[Stormrunner]

I'll say no as well.  And I had a bad case.

We did have to toss plasticware, no stick pans and make sure gluten free stuff was cooked in oven before anything with gluten.

However, if you've been scratching you might have caused another issue that might need treating.

I had a fungal infection myself from it (but as I said, my case was bad and prolonged for a bit).  I basically had athlete's foot on my whole body.

[Gael]

Thanks everyone! I got my skin biopsy result back. It was negative for DH. I am back on gluten and the rash is still the same, itchy, red bumps everywhere m (except face, palms and soles). I am back to the drawer board what it could be. Next step allergist.

[ravenwoodglass]

Did the doctor biopsy intact skin beside the rash? If they biopsied the rash itself you may have a false negative. They also need to tell the lab that they are looking for DH antibodies as it requires special testing methods. I hope you get some relief soon.

[Stormrunner]

Yeah, they didn't even do the skin test on me (cuz my blood test pinged me positive immediately - even a month off gluten) and I had that fungal infection I mentioned. 
If you end up with a fungal infection on top of the rash - you will get a false negative as well (in fact, we didn't know I had a fungal infection, we had to guess because even THAT came back negative and we had already tried antibacterial).

[Gael]

On 12/6/2021 at 5:29 AM, ravenwoodglass said:

Did the doctor biopsy intact skin beside the rash? If they biopsied the rash itself you may have a false negative. They also need to tell the lab that they are looking for DH antibodies as it requires special testing methods. I hope you get some relief soon.

I double checked and the nurse said they were taking a biopsy of the rash itself and beside the rash for the DH testing. I am going to another dermatologist for a second opinion. My rash is very itchy, symmetrical and pretty much effects my entire body (with again the exception of my face, palms and bottom of feet). It just seems so obvious that it would be DH but so far the TTG blood test came back negative and the skin biopsy. I can’t do the endoscopy right now because I am pregnant. But the rash predates pregnancy so I know they aren’t related. I was off gluten for almost 20 days (and very strict. I used my own toaster and separate cutlery) and got no relief so I am at a lost!

On 12/6/2021 at 12:37 PM, Stormrunner said:

Yeah, they didn't even do the skin test on me (cuz my blood test pinged me positive immediately - even a month off gluten) and I had that fungal infection I mentioned. 
If you end up with a fungal infection on top of the rash - you will get a false negative as well (in fact, we didn't know I had a fungal infection, we had to guess because even THAT came back negative and we had already tried antibacterial).

Hmm I’ll ask the next dermatologist I see if there is a possible fungal infection. I have been on steroid creams and it hasn’t helped at all!

[Stormrunner]

On 12/8/2021 at 10:24 PM, Gael said:

Hmm I’ll ask the next dermatologist I see if there is a possible fungal infection. I have been on steroid creams and it hasn’t helped at all!

I know I'm late replying.

 

But, you would be surprised how easily you can get bacterial or fungal infections from scratching.

I was wearing gloves in morning, but took them off in my sleep, and then scratched in my sleep.  Even washing hands before bed didn't stop me from getting it.

[CeCe22]

I have been on strict gluten-free diet for almost six months and I still have rash with very few days of relief. We have changed cooking pans and utensils. My husband is pretty much on gluten-free diet with me. Recently I started seeing a doctor at a celiac center. She did new blood work and all my numbers have come down since my blood work in May. That is a good thing. She is sending me to another dermatologist for a second opinion to see if I have linear IgA dermatosis instead of DH. I go for that appointment in early February. Anxious to hear what results will be. 

[Scott Adams]

Do you include oats in your diet? If so, around 10% of celiacs also react to oat avenin in a similar way that they do to gliadin in wheat, rye and barley gluten.

[CeCe22]

3 hours ago, Scott Adams said:

Do you include oats in your diet? If so, around 10% of celiacs also react to oat avenin in a similar way that they do to gliadin in wheat, rye and barley gluten.

I quit eating oats several months ago. I had read on here that it could be oats. 

[Scott Adams]

Apparently lentils are often contaminated with wheat as well. I still wonder if you're not getting contamination, but it could also be some other trigger.

[CeCe22]

4 minutes ago, Scott Adams said:

Apparently lentils are often contaminated with wheat as well. I still wonder if you're not getting contamination, but it could also be some other trigger.

I hope we can get to whatever it is soon