Possibly DH?

[Assumption]

Hi all,

 

I just got a call from my (mildly) autistic son's pediatrician, telling me that the follow-up bloods to check his low iron levels show that not only is he still low on iron, he had high levels of all 3 markers for celiac disease. So he'll be referred to get a biopsy.

This kinda got me thinking though. After doing a little googling, I've discovered the existence of DH. Might I have it? If my son has celiac disease then it's entirely possible I have it too, given our shared genes. And I have some skin problems that have plagued me about 20 years...

Since about age 12 (ish), I've suffered from something I simply refer to as "The Itchies." It has come to dominate my life. Some days it persists for hours, but most days it's hanging round the corner waiting to be triggered. Clothes too tight? Itchy legs. Clothes too loose? Itchy legs. A few drips of water on my legs? Itchy legs. A single crumb or grain of sand on the bedsheets? You get it. Just about anything sets them off. In fact, I've gone months at a time without showering, in the past for fear of getting the Ichies. I don't get to go swimming with my family because it's not worth the almost-guaranteed itchiness that'll result.

Once it starts, it tends to get worse and worse, reaching a crescendo of pain and itchiness that at best makes me intolerable to be around. I can't be reasonable when itchy. All I can do is sit and suffer. Generally I'll itch it, and try and find something distracting to do like play a computer game, though sometimes the itchiness makes it impossible to even play a computer game. In the past, it has left me curled up on the ground whimpering. Eventually (after about 45 minutes) it'll start to subside and I'll be able to function again.

This really curtails my options on a day-to-day basis. Not only is it extremely unpleasant, but I feel like I'm missing out on things in life because of it.

When my skin starts to get itchy, I'll often end up picking at particularly itchy spots, often to the point of breaking the skin. I thought I was just getting ingrown hairs on my forearms, biceps and thighs but perhaps it's DH? I have accumulated a fair few scabs that I cannot leave alone and let heal, and have a few pretty visible scars too as a result.

I should mention that I don't really have much of a "rash." Looking at my skin, you'd just see a bunch of scars and sores/scabs - the unhealed ones do sometimes get quite inflamed if I don't leave them alone, but the red inflamed patch of skin would generally be less than 2cm in diameter. I don't get a huge patch of red, just the sores. Which lead me to assume that the sores were due to compulsive picking and that if only I stopped picking and scratching, my skin would LOOK fine (even though it felt itchy).

Anyway, does this sound like it might be caused by celiac disease? It seems like a good fit in that the itchiness is very intense, and that I "scratch the lesions off" (assuming they're lesions). However, I'm not sure if DH ever occurs without a "red patch"?

Any help at all most appreciated. Either way I'm thinking I'll be getting myself a blood test. The only real question is whether to wait to check if my son is diagnosed beforehand or to do it right away before confirming that he actually suffers from celiac disease.

 

 

[captaincrab55]

Sounds like you should visit a Dermatologist.        You could try an Iodine patch test, but it's not accepted as the Gold Standard here n the USA.      I suffered with that itch for over 50 years.

[Assumption]

Thanks for the quick reply cc55!

I thought I should probably provide some pics, which I just took now.

back

Open Original Shared Link

arm

Open Original Shared Link

leg

Open Original Shared Link

As you can see there's more scars than actual inflamed areas at the moment.

 

[squirmingitch]

I would say you need to get the celiac blood panel. This is it:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Keep eating a regular gluten diet until all testing is complete. That goes for your son too until he his endoscopy is completed. You need to tell the doc about your son. All 1st degree relatives of celiacs should be tested every 2 yrs even if they have no symptoms. If they do present with symptoms prior to 2 years then they should be tested right away. 

DH presents bilaterally 99% of the time -- appearing on both sides of the body ie: both elbows, both knees, both sides of the back in the same places etc... It is terribly itchy; a bone deep itch, generally worsening (if that's possible) at night, keeping you from sleeping or waking you up. It stings, burns, itches or any combo. It generally does not quit itching in 45 minutes. It itches all the time.

You may or may not have dh. 60% of people with dh test negative on the blood panel. They have to have a dh biopsy of the skin. This is done ADJACENT to NOT ON an active lesion, there is a special staining process. for the biopsy. 

Having said that, celiacs are prone to many skin issues. Your son got the celiac gene from either you, or his mother, or both of you. That does not automatically mean whomever he got the gene(s) from presently has celiac but it's certainly possible and certainly possible that parent will present with celiac at some point in their life. 

A primary care doc can order the celiac blood panel. For that matter, your son's pediatrician could order it for you if he was willing.