90 replies to this topic

[SPJ&E]

The tough part is finding a doctor anywhere near our area. We live in a small town and it's not easy. We drive 1.5 hrs. (1 way) to see a good pediatrician and the specialists are a good bit further (one is a 3 hr. drive one way). We would be more than willing to put him on gluten for a time, in order to do a biopsy if we could actually find a doctor within a reasonable distance that is worth anything. We took him to his ped numerous times for this rash...she was stumped. She referred him to a local dermatologist, who basically said he had no idea...to try this steroid cream on it (that his office didn't even call in like they were supposed to). He was just...dumb, to put it nicely and it was a total waste of time (and that wasn't the only issue we had with that office).

So yes, we would love to have an official diagnosis, but that's easier said than done. Our older son's GI recommended bloodwork, but I know how unreliable the bloodwork is, especially for young kids. We are not willing to put him through blood testing at this point when keeping him gluten and dairy free keeps the rash away. A biopsy we would be totally fine with. I think the derm we seen just turned us off of trying to find another, so we have kept him gluten free and he's been fine. He started gaining weight finally and we just left it alone...stuck with it and haven't worried about getting anything "official".

If you don't mind, would you please remove my pictures from what you quoted? Please know that I don't request that to be "snarky" or "rude" in any way. I just may want to remove them from online at some point and won't be able to take them out of someone else's post. Thanks!

[brandiecane]

These first 4 are from Sept. 2011 when I was on the verge of discovering this was dh.
http://rainytown.se/...si/DSC00864.JPG
http://rainytown.se/...si/DSC00866.JPG
http://rainytown.se/...si/DSC00868.JPG
http://rainytown.se/...si/DSC00867.JPG This 1 shows the clear amber fluid. The blisters were coming up so fast & bursting all by themselves.
The following ones are after 6 months gluten free & several months low salicylate & not a lot of iodine but I had been doing so well that I couldn't resist eating 4 tsp. of strawberry banana yogurt & during the night I woke itchin like mad & my neck all broken out in dh. Then other places began to break out again.
http://rainytown.se/...si/DSC02919.JPG
http://rainytown.se/...si/DSC02922.JPG
http://rainytown.se/...si/DSC02923.JPG
http://rainytown.se/...si/DSC02926.JPG
http://rainytown.se/...si/DSC02927.JPG
http://rainytown.se/...si/DSC02929.JPG Shows the scars on the back of my leg from earlier.
http://rainytown.se/...si/DSC02930.JPG Other leg. Scars will fade away after about 5 months.
http://rainytown.se/...si/DSC02938.JPG
http://rainytown.se/...si/DSC02940.JPG Blister on lower abdomen - just formed.
http://rainytown.se/...si/DSC02945.JPG Brand new blister in crook of arm.
http://rainytown.se/...si/DSC02967.JPG
http://rainytown.se/...si/DSC02969.JPG
http://rainytown.se/...si/DSC02980.JPG
http://rainytown.se/...si/DSC02981.JPG

I have been adamant NOT to scratch! None of the lesions or scars are the result of scratching them. It's bad enough w/o making bad scars from scratching them. I will scratch around them but never on them. I will rub on them and press on them.
The only place I have not had them yet was on the soles of my feet. I get them horribly in my scalp & they tend to be very large there --- the size of a quarter. They look different than these photos but there is no way to seperate the hair well enough to get a good clear photo. In the scalp they generally take 6 weeks to heal. All others run a course of 2 to 4/5 weeks depending on if I was gluten free or got cc'd (only once) & if I got too much iodine or salicylates.

Oh my goodnees, I am so thankful you posted this. That is exactly how mine looked before I went gluten-free. I struggled with DH for so long before I finally went gluten-free and saw results. I was misdiagnosed several times by multiple doctors and I wish I would have seen this forum months ago! Do you notice any flare ups from Chlorine or Tylenol? I got in a chlorine pool this summer and had a terrible flare up. I even had to get a chlorine filter on my shower head. Lately, I have been taking Tylenol PM and am experiencing a flare up. That's the only thing I can really think of that would cause a flare up. Have you experienced exacerbations from Tylenol?

[LauraB0927]

This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/...0622_135205.jpg

Dani! This is exactly how my fingers looked!!! I dont get it anywhere else on my body but I do get eczema on the back of my neck (who knows, it could be DH), but I get those itchy, red bumps on my fingers, but they dont really look like they are filled with anything. They're definitely raised, but I dont see any puss or fluid in them. It hurts when I wash dishes (my mom thinks I'm just trying to get out of it lol) Could it be DH?

Since I'm a nursing student and need to work with people in the hospital, I went to the doctor because I didnt want the patients to see my hands and get all freaked out - plus, I didnt want any of their germs getting into open cracks in my skin!! He didnt even know what DH was - looked up some pics on google and said it was eczema on my fingers, gave me some cream, and sent me on my way. The cream mildly helped but it came back so I just gave it to someone who actually had eczema.

I havent had any gluten accidents in a while, and the bumps went away. After seeing your pic I think I may have DH, but dont want to jump to conclusions because its nowhere else on my body...your thoughts??

[Ninja]

Hi all,

I'm adding more pictures now that my rash has developed some consistency. I get it on my upper back/shoulders, buttocks (not amused ), stomach, jaw line and hairline. Some more recent-ish photos - the rash hasn't changed much - varies in severity (these pics are medium severity). Still not dx'd but Celiac is suspected (I think?).

http://cl.ly/image/190q3e3m1A09
http://cl.ly/image/2j1M2s2E2l2b
http://cl.ly/image/2y2A0N160h29
http://cl.ly/image/1i1o1B2D1J0H
http://cl.ly/image/3j1K3i2C412g - I always always always get this "lesion" in the same spot every time I get glutened or iodined - so strange.

Still obscenely itchy, stings, doesn't like hot weather or water, etc.

Hope this helps someone! :-)

Laura

[LilLil]

does dh itch? i have a rash on the inner part of my arm by elbow but it doesn't itch. i put eucerin healing ointment on it and it seems to lighten it up a bit, but does not go away. will be seeing derm in a couple weeks.

[squirmingitch]

DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.

[LilLil]

DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.

ok great. thanks for the info. maybe it's just dry skin. it doesn't itch at all, but it is there. it is like little red dots.

[squirmingitch]

Since dh can flare at any time until all the antibodies are out of our skin, I thought it would be good to show such as well as the progression of it as it ravages the skin. I have been absolutely strict gluten-free since Dec. of 2011. We have a gluten-free household & eat 99% whole foods. Have not eaten out at all. My dh had improved greatly upon going gluten-free & even though I still had some dh; it was nothing like what began in Sept. of 2012. I have been mostly low iodine since going gluten-free since I have found iodine to make my dh flare.
In the beginning of Sept. 2012, I began to have a spontaneous flare of dh. When it began I had no idea it would continue flaring to this day & so severely.
These first 2 photos were taken on Oct. 12, 2012.




These next photos were taken on 1/13/13.














Above shows what I call the flesh eating lesions. It starts as a tiny little water blister & I don't scratch --- it just eats away at the flesh & gets bigger & bigger & bigger. You will see more photos of this same area in the next date series. You will see what it turns into from this point.



Apparently I can only post a certain # of photos on one post so I will have to make another post to put the rest of the photos on.

[squirmingitch]

Photos taken on 1/19/13.


Above is the flesh eating lesions you saw earlier.



Below is the underside of my breast.


Lesions on my front:


My left side up to armpit area:


The flesh eaters:




My scalp has been ravaged more than anything you see here.
Clothing is sheer torture to wear.

[GFreeMO]

Ditto to Squirming's pics. Mine looks EXACTLY like yours.

[mushroom]

Ditto to Squirming's pics. Mine looks EXACTLY like yours.

I am sorry you both have to suffer like that; it looks incredibly painful and uncomfortable.

[squirmingitch]

Thanks Shroomie. It does suck.

[GFreeMO]

Thanks Mushroom.

[Celiac Mindwarp]

Thanks squirmingitch.
I am sure a friend has dh from your pictures. I will show him in a couple of weeks when I next see him. He had negative blood test, but had been gluten-free beforehand. Great thread, thanks.

[sisterlynr]

Thanks Shroomie. It does suck.

Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . .