DH & Negative Blood Work

[westphilly]

hi everybody --

I've been trying to get an incredibly itchy rash that may or may not be DH diagnosed. I'm in my late 20s and have developed (over the past 1.5 years) a chronic, tremendously itchy rash that flares up and goes away. Since December, though, I've been in a huge flareup that hasn't gone down and has migrated to new parts of my body [what fun!].

For my entire life, my maternal grandmother's family has believed that many family members have a genetic 'wheat allergy' that causes us to break out in a rash when we eat wheat. Before I even went to a doctor, it was widely assumed among my family that I was just the unlucky person in my generation to develop the same 'allergy' that so many other people in the family have.

So, based on all of that, both my PCP and allergist concluded that I must have either a) a wheat allergy; b) celiac; or c) a thyroid problem. So far, the blood work and pinprick tests for all three things have come back negative. I won't see a dermatologist for another 2 weeks, so for now I'm just eating lots of wheat and scratching myself.

But here's my question: I've heard that celiacs with DH often don't have positive blood results when they have the celiac panel done. Is this true? If so, why would that be? Have any of the people here with DH that was diagnosed by a skin biopsy also had negative blood test results for celiac?

Thanks to you all! This site is a great resource.

[aklap]

Hi Philly,

DH is the skin manifestation of celiac disease. Instead lesions in your intestines - you have lesions on your skin. If you dx'ed with DH, you are then dx has having CD.

DH is dx'ed by taking a sample of your skin - next to one of the lesions [not on the lesion]. I'd ask your derm if they are familiar with DH. If they aren't, they may not know what to look for or how to test for it.

No, it's not uncommon for someone to have DH and not have villi damage [positive Celiac Blood tests or positive biopsy results]. The presentation of symptoms in CD varies wildly. There are around 300 sx's associated with CD. It's called "The Great Imitator" for a reason It can mask itself in so many ways.

If DH is really what you have, I don't suspect a skin prick test will be valid. CD is not an allergy. It's an autoimmune response your body puts forth.

Good luck with your derm. appt. Please, let us know how it goes!

Here's some more info for you:
http://www.gluten.net/dh.htm
http://celiacdisease.about.com/od/whatisceliacdisease/a/DermatitisHerp.htm
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[celiacmaine-iac]

Hi there,
It sounds like you and I have had very similar experiences.

[westphilly]

Thanks, Al & Steph!

I'm definitely going to try going gluten-free for a few months after I'm sure all of my celiac/DH-related testing is done. I think it makes sense, and regardless, my grandmother and mother would nag me so much that I'd have to anyway. I'll be interested to hear what the derm thinks.

Steph, I'm right there with you -- I'm scratching myself to bits right now. Cortizone 10 works great... for about 5 minutes, and then I have to reapply.

It started out mostly on my knees, the backs of my hands, and my shins. Then, the first week in Janaury, it showed up on my thighs, elbows and forearms. Now it's even on the tops of my ears! I don't seem to be getting the textbook 'watery blisters' that I see on the DH websites. The wreckage that I leave from all of my scratching looks exactly like some of the other pictures, though. My grandmother's version of the rash looks very suspiciously like the blistery version of DH [she was diagnosed with this so-called 'wheat allergy' by a country doctor in the 1970s, and has never had any follow-up testing].

But anyway, thanks again. I will let you know how things turn out.

[celiacmaine-iac]

I didn't get the watery blisters either. I did have one that was like that. I was reading that a lot of people scratch the blister off before it's fully formed because of the itching. It makes sense to me, because in my case the itching would start long before the lesion appeared. I could feel the lesion under my skin, but it didn't show for a few days, even though it itched intensely during that time.

Glad you're planning to give the GF diet a try. Be patient with it, it took a long time for the lesions to go away, but I did get some relief from the itching within 2 weeks. Be careful how much cortisone you are using. Even over the counter drugs have side effects. I understand the temptation to apply more than recommended, but you don't want to end up with other problems too. Also as hard as it is, try not to scratch. Secondary infection is always a risk.

Good luck and keep us posted.

Steph

[westphilly]

I'm also itching way before any lesions appear, so I think you may be right about scratching them off before they have a chance to materialize.

Good tip about the cortisone -- after I read your post, I suddenly remembered the story [in the news within the past year or so] of that poor girl who died after using an enormous amount of Ben Gay.

The Cortisone 10 package doesn't have a warning about applying it to your entire body like Jergens, but maybe that should be obvious.

[aklap]

Doctors will use Dapsone for treatment of DH. This does not allow you to eat gluten.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[ostrich]

West, the symptoms and locations sound almost exactly like what I get. I've found there's only a few things that will help:

1. Cortizone cream, like somebody mentioned earlier. But like you said, the effects can die off quickly.
2. A cold compress. I mean really cold. Cold enough to numb your skin (my areas tend to be itchy and hot). When you can start feeling your skin again, re-freeze the compress.
3. Stay away from gluten. In my case, the more I get glutened, the larger/more itchy the area becomes. The last time it happened my entire right shin was consumed.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[celiacmaine-iac]

Os brought up some good points. The cold compresses really help, but at my worst I needed a full-body compress! I was actually wishing there were something like a wet suit that had tons of pockets that you could fill with ice packs!

One other thing I forgot to mention is avoiding iodized salt. Iodine is somehow involved in the reaction. I now use non-iodized salt in my cooking. I know you can't eliminate the gluten until your testing is done, but maybe avoiding iodine will help a little.

I can honestly say I know how miserable you are. I hope you get through the testing phase soon so that you can try going GF.

Steph

[westphilly]

Cold compresses -- an excellent idea that I hadn't heard of until today. Thanks for the tip!

Cutting out iodized salt -- also an interesting idea. I had read elsewhere that iodine makes DH worse, but I wasn't sure if I should cut it out before I was done with all of my various specialist visits. Would cutting out iodine now impact any potential biopsies that a derm. or a gastro doc might do?

[celiacmaine-iac]

westphilly said:

[westphilly]

Thanks, Steph!

[ostrich]

Glad to help. Remember, the cold compress is kinda like the cortizone cream: once it starts dying off, you'll start itching again. It was the only way I could numb my skin without going to the doc for shots.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[celiacmaine-iac]

Os said:

[ostrich]