17 replies to this topic

[wmramsel]

Thanks for your reply.  About the blisters.  Do they all actually have liquid in them?  I have what looks like a small blister but when I scratch it, the top skin comes off.  Now on my feet, the blister swells and I release the fluid with a sterile needle, apply alcohol, ointment and put on white socks until they heal.  Most of my rash has been broken open and bleeds.  I have a DH dx but I'm not certain it is correct.  I did read in that first document that there are different forms of the rash.  I'm miserable!  Took myself off of Dapsone and not itching quite as badly.  I may have been having a Dapsone rash.    

 

They look like they do, but she either scratches them open almost right away, or won't let us get close enough to know for sure.  

[mendylou]

Well, this picture is a little hard to tell because it is so "angry" red.  But, the eczema is scaly, not as bright red, and looks more like a bad case of dry skin.  She has it a lot more often and it is spread in specific places that she always gets it.  Back, legs, elbows, in the diaper area if it is really bad.  We use hydracortisone cream on it and it is a noticeable difference when we do.

The DH is mostly in the "diaper area", but I just noticed 4 other places that popped up yesterday and today on the backs of her knees and the insides of her arms.  It is more dotted, bright red, and forms blisters almost right away.  It is SUPER itchy and she complains that it hurts.  Hydracortisone doesn't work very well on treating the DH itself, but helps with the itch.  We ultimately end up treating with anti-bacterial cream because she ends up scratching deep into the lesions.  It takes FOREVER to heal.

 

The third is new.  It has only happened recently, and it was the last rash to show up- not occurring until sometime after she went to bed after the ER visit from attempting a gluten challenge.  It consisted of 3 bumps on her legs in different spots, about the size of a dime or nickel.  They just sort of looked like bug bites from afar, but when you got up close, you could actually see her pulse in them!!!  They would go white and then back red with her pulse.  When you felt them, they were hard, and had a big knot under the skin.  They took quite a while to go away as well.

 

When the rashes intermix, like the above picture, it is really hard to tell the difference.  We generally just throw the book at it.  We use the hydracortisone all over, then use the anti-bacterial cream anywhere there is broken skin.  She typically gets a slather of thick diaper cream in her girly parts and bum so that we aren't putting steroids on her... (*ahem*)... parts.  It probably doesn't matter, but it makes me feel better and keeps her pH from getting thrown off and ending up with a UTI or something.

All of these various descriptions sound familiar to my skin conditions.  I have not had a positive diagnosis of DH, but I know that is what I have based on all my research.   I get the watery filled blisters, the hive like eruptions, and the hard lumps under the skin which are very painful.  All of the m take a long time to heal.  Most of my eruptions eventually create a crater or divet which seems to eat thru the skin from the inside out.  I have to scratch the tops off.  It feels better as the fluid oozes out but it also leaves scars as it heals.  I have decided I will live with the scars if scratching makes them feel better.  I have been gluten free for almost 3 years but I have always had some degree of breakout in that time.  To backtrack I'm sure this has been building under my skin since I was a child so it will take a long time to get rid of all the deposits.  I am 61 and I remember going to the doctor in my teens when I had my first skin breakout which was ALL over my scalp.  He gave me a green bottle of medicated shampoo which did not help.  Thru the years I have seen dermatologists, taken allergy shots for 20 yrs, taken prednisone, numerous other things.  No one ever suggested celiac, it was all too new then.  At age 57 I made the connection talking to a celiac diagnosed colleague of mine. I don't know that this helps you any but I know what you are going thru & at least you don't have to wait until age 57 to find out what you might do to get relief.   I use multiple moisturizing creams to help, recently I found applying menthol in muscle type creams seems to help with the pain.

[sisterlynr]

Thanks for your reply about your daughter.  I have posted just this morning with a ? of DH.

 

I do have blood relatives with Celiac and one cousin does have the scalp breakout.  I am the only one that has this horrible rash.  My cousin did not have a positive blood test but had a endoscopy that showed the villi damage and she had anemia and iron def.  I had tested the same way . . .  (sigh)  just ready to heal.

 

My rash right now is varied.  I feel liquid coming out of lesions when scratched.  I too feel a relief when the skin comes off the lesion but they bleed and are pitted horribly.  I have some very small blistery places that do not bleed but wow, do they itch.  

 

You may want to read my new post.  Hey . . . I've got to have relief and after reading and seeing the Candida skin rash, I'm not going to argue with this new doctor.