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Severe Dh? - First Time Poster (With Pictures)

melissa1993

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melissa1993 Newbie
melissa1993
Posted

Hi - this is my first post on the site!

 

I have not been confirmed to have celiac disease yet, however I'm currently waiting for a blood test to come back (along with testing for wheat allergy etc.) to let me know what's wrong.

 

For the past 2 and half months I've had one of the worst rash's imaginable - it started out with some tiny little spots on my neck, which lasted for about 2 weeks which eventually broke out into severe painful blistering - I visited hospital and was diagnosed with impetigo (I have attached photographs). The antibiotics didn't touch me at all and I was sent for skin cultures, covering fungal, bacterial etc. - it was all negative. The rash just got itchy and felt like a burn as if someone had thrown boiling hot water all over my neck, it was oozing and flaking, and the tiny spots were spreading down my back as well. I was on three weeks of antibiotics, for impetigo, fungal infection and some other bacteria infection which apparently it was. 

 

I'll stop waffling as the pictures explain themselves. I eventually got sick of living with this - it was affecting my life. My doctor told me I had an allergy, but kept blaming the fact I dye my hair (it's not that, I've had skin tests and this appeared a month after last dying it) - so I took it into my own hands and concluded I could have a food allergy (I was diagnosed with IBS 5 years ago, also have issues with my kidneys which are unresolved). I've been gluten-free for 2 weeks and I have FINALLY seen a difference in my rash, after it getting worse and worse for 2 months straight. 

 

However, I am concerned as my rash doesn't look anything like I saw online in it's later stages. I will post below.... WARNING, these pictures are a pretty severe rash. Do I have DH? Or is this a rash associated with just wheat allergy perhaps? (I'm seriously clueless and would be grateful if someone could clue me in as I get nothing from my GP).

 

 

First starting out like this, spreading round the back with small pimples too:

t03yvn.webp

 

Pimples start turning into blisters after about 2 weeks:

fjkdxl.webp

 

This photo was taken at it's worst stage, about 3 weeks ago, persisted at this severity until going gluten-free:

2ebbkp5.webp

 

Photo taken a couple of days ago after 2 weeks on gluten-free diet:

a2537n.webp

 

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squirmingitch Veteran
squirmingitch
Posted

I'm sorry it's taken so long for me to answer you. I was doing income taxes. Boooooo!

 

That looks like the way my husbands presented just before going gluten free. It also looks a lot like a milder version of the worst stage I went through. Here's a link - start with the post of my photos on 1/22/13 & continue with them on pg. 6.

https://www.celiac.com/forums/topic/94056-dh-photo-bank/page-5

 

The rash has many different presentations. Read the sticky at the top of this forum & you will read it presents many ways.

Just looking at the photos I can't say for sure. There are many rashes associated with celiac disease and only one is dh. It is also possible to have a wheat allergy & also have have celiac disease. 

 

From your above post:

"I was on three weeks of antibiotics, for impetigo, fungal infection and some other bacteria infection which apparently it was."

Was that a typo? Did you mean to say "which apparently it wasn't"?

 

60% of the time those of us with dh test negative on the celiac blood work. That's IF the doc did the full current celiac blood panel.

The best way to get a dx of dh is to get a skin biopsy FOR dh. This is taken on a CLEAR area adjacent to an active lesion but not ON the lesion. Most derms do not know this. You have to be eating gluten just like for the blood tests.

melissa1993 Newbie
melissa1993
Posted
  • Author

I'm sorry it's taken so long for me to answer you. I was doing income taxes. Boooooo!

 

That looks like the way my husbands presented just before going gluten free. It also looks a lot like a milder version of the worst stage I went through. Here's a link - start with the post of my photos on 1/22/13 & continue with them on pg. 6.

https://www.celiac.com/forums/topic/94056-dh-photo-bank/page-5

 

The rash has many different presentations. Read the sticky at the top of this forum & you will read it presents many ways.

Just looking at the photos I can't say for sure. There are many rashes associated with celiac disease and only one is dh. It is also possible to have a wheat allergy & also have have celiac disease. 

 

From your above post:

"I was on three weeks of antibiotics, for impetigo, fungal infection and some other bacteria infection which apparently it was."

Was that a typo? Did you mean to say "which apparently it wasn't"?

 

60% of the time those of us with dh test negative on the celiac blood work. That's IF the doc did the full current celiac blood panel.

The best way to get a dx of dh is to get a skin biopsy FOR dh. This is taken on a CLEAR area adjacent to an active lesion but not ON the lesion. Most derms do not know this. You have to be eating gluten just like for the blood tests.

 

No problem! I'm grateful for the input!

 

As horrible as the rash is, I'm glad to know that other's have experienced the same, as most of the images I've seen are just the small pimple-like spots - my doctor (who's speciality is apparently dermatology) said that a gluten/wheat allergy wouldn't cause the rash I have, however she's been absolutely terrible throughout the whole process so I didn't really believe her. Your case of DH looks extremely painful - I really feel for you! At what age did it present itself, if you don't mind me asking? I'm 21, and I've never had any issues with my skin until now - it's very odd that something like this would appear quite late on!

 

Yeah, that was a typo! I tested negative in the skin cultures twice for anything bacterial or fungal - and the antibiotics I was put on actually made things worse. Basically, the doctors have ruled out those - and I'm looking at allergies at the moment. 

 

I have done a home testing kit for celiac, but that came negative, but apparently they're pretty inaccurate anyway. Problem is, with the blood work I did not eat gluten for two weeks - with the exception of accidentally eating a product I was unaware of 4 days before the test. If nothing comes back I guess I'll probably have to demand a skin biopsy for DH - however, with the NHS I'll probably have to wait months.

 

Thank you for your reply!

squirmingitch Veteran
squirmingitch
Posted

I was 55 when those photos were taken and I had been gluten free for 10 months when that outbreak began where you see it on my back. I had had it like that on my back before & even worse but I had never had it get like it did in those horrid photos starting 1/19/13. It WAS extremely painful! Like slivers of glass stuck in me & burned constantly. The slightest movement made me want to scream bloody murder. I walked like I was on eggshells & even the "jiggling" (NOT jiggling b/c I was walking so softly) from that was torture. At that point I could not wear clothing at all - I stayed home & naked. I found the most relief (& using the word relief is a joke) slathering down with straight out vaseline. 

Dh can present at any time in life. DH is celiac & celiac can present anytime in life. DH can come & go at will anytime whether you're gluten-free or not UNTIL all the antibodies are out of your skin -- some of us take weeks, some months, & some years - I got lucky & got stuck with years. Looking back now I know that I was celiac since at least the age of 13 or 14. I also now know my mom was. She had the rash in her scalp but thought it was nerves from raising 3 teenagers. :D Who could blame her for thinking that? We were a handful!

The home testing kit is bunk. If you want to get a skin biopsy you will have to do a regular gluten challenge just like for blood work.

Open Original Shared Link

You would need to eat it for the 12 week period.

 

This is also why so many with dh don't have an "official dx". Who in their right mind, once they find out this is the problem, would do a gluten challenge knowing they are dumping antibodies under their skin that they will have to pay the price for for who knows how long? Especially when 99% of those people have been to doc after doc, derm after derm, getting tested & treated for everything under the sun & it's taken years & nothing has helped.

 

I see you're in Canada? 

 

Ask any questions. Nothing is a stupid question.

 

BTW, I'm 4 million times better than I was. I get itchies still over 3 years STRICT gluten-free but they are very few & I have hours & hours & hours when they don't itch & they heal in 3-4 days & sometimes faster. 

squirmingitch Veteran
squirmingitch
Posted

If you decide to go gluten free & forego an official dx then be sure to read the Newbie 101 so you know how to protect yourself.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Also read as many threads here in the dh forum as possible. You will learn a great deal.

melissa1993 Newbie
melissa1993
Posted
  • Author

Oh yeah, I understand the pain completely! Luckily, it's getting a whole lot better and I'm not shedding skin anymore (which was a huge pain). 

 

My test results came back negative, honestly, I knew they would - nothing ever shows up as an issue when I have any sort of medical test. Also, I wasn't eating gluten at the time - something which I did emphasise to my doctor...  However, I'm still carrying on with being gluten-free, there is no way I'm taking any chances and ending up at that point with my rash again - it was absolute torture. 

 

I've done a couple of little tests and have eaten small amounts of gluten to see what happens - it seems that my rash starts to flare up again, or a patch appears about 8-9 hours later. I'm not sure whether to carry on going to the doctors as seen as they picked up nothing, it seems like a waste of time, especially when all my doctor suggests are antibiotics and creams.

 

Actually, I'm from the UK!

 

Thanks so much for your advice!

squirmingitch Veteran
squirmingitch
Posted

YVW Melissa! I would say to just forego any more testing & just go gluten free for life. The only reason I can think of for not doing that in your case is the fact that you are 21 and I imagine someday will want to have kids. Celiac is a genetic disease you know & if 1 or more of your kids shows any symptoms it will be much easier to get them properly tested if you have an official dx. So that is something you will need to consider. 

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