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Most Likely I Do Have Dh, But Want To Compare Symptoms

raisinflames

By raisinflames
in Dermatitis Herpetiformis

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raisinflames Newbie
raisinflames
Posted

Hello everyone,

I just want to share my story and see if it sounds like I have DH.  I was never diagnosed by a dermatologist, this was a self-diagnosis, but I have many reasons to believe that I am right.  I am a 25 year old caucasian female.  I consumed gluten for most of my life until the age of 21 or so; then, I developed a weird lesion on my neck that would not go away. I tried different antibiotics, but nothing worked.  Then, more lesions started popping up on my neck and then face.  Sometimes they would form a line pattern, so I suspected sporotrichosis and took some antifungals, which helped at first, but then stopped helping.  The lesions were huge, like the size of a dime, but they mostly hurt and leaked pus (sorry this is gross); however they did not look like boils (that I see on some DH pictures); I think they immediately came out as open sores, but of course I might have picked at them without realizing at the time (being on adderal did not improve things).  Their center would be pretty hard and moist, and filled with what looked like granules of some sort. They never really itched (still do not itch); however, they do hurt/sting, rubbing them feels sorta good so I guess they do kinda itch (I am confused lol), but the one on my lip REALLY stings, if I start picking at it, tears would start flowing from my eyes involuntarily. It feels like a thousand pins in my lip.  Also, after healing, they would leave a purple and white scar that would not go away and stand out against the rest of the skin; the ones on my face are actually idented sorta like cystic acne scars; the one on my nose is uneven and bumpy.  Sometimes the scars would form a mini-blister that would be painful and unproductive to pop; sometimes they would form a pimple.   I (mostly) do not eat gluten anymore except rare random exposure due  to my forgetfulness or lack of food to eat (the other day I bought Rafaellos and ate a couple before realizing they do have some gluten in them; but I take Gluten Cutter, not sure if that works or not).    So, anyways, to summarize:  

- The lesions do not exactly itch, but they definitely sting/burn, and it feels good to rub some of them (not my lip, that is too painful).

- If I remember correctly, they never looked like blisters, and started with pretty large open sores.

- If I get an outbreak now, it will start looking almost exactly like a pimple, but if I try to squeeze it, it is a painful, hard, watery blister with nothing coming out. It feels like there is a cluster of granules under the blister.   Sometimes it starts as a brown, VERY TOUGH piece of tissue (a little crust that is almost impossible to rip off, later it falls off by itself and a regular crust forms).

- The lesions leave scars that are either indented or discolored or both.  Even the scars still feel kinda prickly and they never go away.

- Cutting down on my gluten intake decreased the number and severity of outbreaks, but I still do get them from time to time.  Right now my face does not look so good without make-up.

 

The weirdest part: At some point I though I had Morgellons disease, and my lesions did look exactly like the Morgellons lesions with little "roots", etc; I was also finding fibers on my skin and even under my skin. I am not sure if I was losing my mind or what, but I even studied samples of my skin under microscope and found ingrown fibers, etc.  Later those symptoms mysteriously vanished when I started cutting down on gluten intake. I am still not sure what it was.  

So can anyone relate to this?  I am REALLY interested in your feedback! Thanks!

 

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raisinflames Newbie
raisinflames
Posted
  • Author

Also, do you ever experience random itching of the palms of your hands (feels like you played with some steel wool or ate a prickly pear cactus, but not as intense?) I just noticed that this is something I experience quite often (but without lesions on my palms).

BlessedMommy Rising Star
BlessedMommy
Posted

If you are still having lesions, you could get a skin biopsy. I do not have a formal DX for my gluten caused skin rash, but I believe that a formal DX is best, if at all possible. :)

raisinflames Newbie
raisinflames
Posted
  • Author

If you are still having lesions, you could get a skin biopsy. I do not have a formal DX for my gluten caused skin rash, but I believe that a formal DX is best, if at all possible. :)

Hi, I actually did have a couple biopsies,and I remember studying the results of one and comparing it to DH pathology; it basically said "neutrophil infiltration" or something like that (main idea: higher than normal neutrophil count and some kind of immune system activity going on without any bacteria present= consisent with DH).  I have a biochemistry major, however I am by no means a doctor, but what I've read and researched does point to that I might have DH. 

GF Lover Rising Star
GF Lover
Posted

A DH biopsy needs to be taken next to an active lesion, not the lesion itself.  Is this how yours was biopsied?

 

Colleen

  • 3 weeks later...
raisinflames Newbie
raisinflames
Posted
  • Author

Hi Colleen,

 

No, I did not know that, can you please elaborate? They took biopsy of the active lesion.

GF Lover Rising Star
GF Lover
Posted

Hi Colleen,

 

No, I did not know that, can you please elaborate? They took biopsy of the active lesion.

A biopsy for DH must be taken next to an active lesion, no on the lesion itself.  Have you seen a Dermatologist for your skin condition?  You also must not be taking any steroids, orally or cream.  You also need to eat gluten to keep the lesions are active.  

 

The DH version of Celiac is rarer than the intestinal version and probably should not be self diagnosed in case there is a different issue going on although I know of a couple of severe cases where there was no question.  

 

Going Gluten Free should not be taken lightly.  It is not easy to make the transition and is a lifetime commitment.  I advise you to seek medical attention.

 

Regards,

 

Colleen

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squirmingitch Veteran
squirmingitch
Posted

I have to say that it does not sound like what you have is dh. Hallmarks of dh are the insane itch 24/7/365 & bilateral presentation, & grouping, along with a few other things you do not mention.

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