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gluten free for many years, new itchy rash in past 8 months - is it DH?

canuckchick

By canuckchick
in Dermatitis Herpetiformis

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canuckchick Rookie
canuckchick
Posted

Hi there, 

I've been struggling with weird itching for about 8 months now. At first it was my scalp -- like crazy most days for a number of months. Mostly there was nothing visible, though I could feel small bumps, like little pimples, occasionally. Not many though, just a few. My lower back also started itching like crazy -- and mostly looked pretty normal despite this (sometimes rashy but mostly just after I would scratch a lot). I have been gluten-free for 8 years, ever since two of my siblings were diagnosed with Celiac. My own blood test was negative but I do react pretty badly to gluten, so I just started carefully avoiding it. I have been pretty careful, but not rigid about cross-contamination. About the time all this started, I did start dating someone new, and undoubtedly have been exposed to more cross-contamination as a result, because he eats gluten and I have let him use my toaster oven, butter, etc. I know, stupid, but I really didn't think I had a severe reaction to worry about. I tried everything I could think of to help the itching, and wondered whether it was eczema, scabies, yeast, fungus, you name it. 

Fast forward all these months, and the itching and rash have only gotten worse. My scalp is actually better, thankfully (because it was driving me INSANE) but my back is pretty bad still, and has spread to a much bigger area. A few weeks ago my elbows broke out in a weird bumpy rash, which has spread up and down my arms. It doesn't actually have visible blisters with fluid in them, but it does look like some of the milder cases I've seen in photos. It is pretty itchy, but only if I scratch it. If I am very careful not to scratch it, then it feels more like a dull burning with a mild urge to scratch. If I give into the urge to scratch, it feels like I never want to stop and I will just feverishly scratch until I force myself to stop again. I can literally feel it getting hot after eating something that doesn't agree with me (besides gluten, which I am not eating obviously). Dairy, nightshades, alcohol all seem to be triggers. Last night I broke out in a hot bumpy rash on the insides of both knees. There's a little bit above my ankles on the outsides too. After the knees started I just wanted to cry. No more! I am so scared it's going to just keep spreading... 

A few days ago, after months of randomly googling and trying to figure out WTH is going on, I came upon DH. It sounds awfully like what I've got, only mine aren't huge blisters, and as much as the itch has been driving me crazy, it's nowhere near what some of you describe (thank god!)  I am now of course kicking myself for all of the cross-contamination I've been careless about. I've even had sips of regular beer that my BF was drinking, thinking it couldn't hurt. 

So my questions: Could this still be DH even though it's not THAT bad? Is there a wide range in how bad the itching gets? And how severe the rash looks? 
And is there even any point in asking for a biopsy, given that I've been 99% gluten free for 8 years, and have zero plans to do a gluten challenge in pursuit of a diagnosis? 
And do some people find that they get flares as a result of "gluten cross reactive" foods, like dairy and corn and all the others, and not just from gluten? Because when I look at that list, per the Paleo Mom website, I've definitely been eating more of those in the past few months too. 

Sorry this is so long. Grateful for any wisdom you've got! I am just horrified at the thought that even after so long gluten-free, I might be reacting to minute amounts, or to other foods that aren't even gluten. 

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SLLRunner Enthusiast
SLLRunner
Posted

When you say your celiac blood test was negative, does that mean the full celiac panel or the genetic test?

I suggest going to the doctor and telling them straight out you are afraid this could be DH, especially with the way you reacted to gluten CC. it's also important that they know you have siblings with the disease.  I would ask the doctor to biopsy the skin around your blister and not the blisters themselves. 

It is a possibility that your first celiac test was a false negative.

canuckchick Rookie
canuckchick
Posted
  • Author

I had a full celiac panel... or as much as the doctor was willing to order 8 years ago. No genetic test. I know it's possible it was a false negative -- seemed likely in fact given that my total IGA was low. But I guess I am still curious -- is it even worth getting a biopsy if I haven't been eating gluten (other than CC) for so long? I'm not willing to do a gluten challenge. 

SLLRunner Enthusiast
SLLRunner
Posted
22 hours ago, canuckchick said:

I had a full celiac panel... or as much as the doctor was willing to order 8 years ago. No genetic test. I know it's possible it was a false negative -- seemed likely in fact given that my total IGA was low. But I guess I am still curious -- is it even worth getting a biopsy if I haven't been eating gluten (other than CC) for so long? I'm not willing to do a gluten challenge. 

Well, if you are not eating gluten, the biopsy is useless to test for celiac. I believe you would have to do about a 3 month gluten challenge if you wanted accurate results.

cyclinglady Grand Master
cyclinglady
Posted

If you are unwilling to do a gluten challenge (I do not blame you because there must have been symptoms you were trying to resolve when you went gluten free), you must buckle down and stop getting even small gluten exposures.  Remember, this is an autoimmune disease, a tiny amount of gluten triggers a flare-up that can last for weeks or months!  It sounds like your symptoms/reaction  has evolved into DH (may it never happen to me!)  

All that cross reactive stuff -- no science backs it.  But you might need to look into a low iodine diet.  Browse through our DH section.  DH is weird.  You can be gluten free for months and then will re-appear out of the blue (based on forum gossip).  I think you have to be crazy strict when you have DH.  The itch is supposed to be enough to drive you insane!  

It might be something else.  I got glutened in July.  Six weeks later my celiac antibodies were sky high per my test with the GI.  Became lactose intolerant again and it hurt to digest anything!  Okay, I can live with that.  But the rashes, itching, hives, vomiting and tummy issues, starting with my head would spread all over my body.  Turns out I have a histamine intolerance because of the glutening.  Antihistamines help it.  It hits fast, and leaves within a day.  Heat, stress, histamine foods all trigger it.  It is better now, but who knows?  It is tree pollen season and I am living on antihistamines daily.  My GP says I am her most allergic patient out of 2,200.  ?

canuckchick Rookie
canuckchick
Posted
  • Author

That is not a title that anyone would want, cyclinglady! Poor you. :(

The more I read the more I think this must be DH. The rash and itchiness has spread from my elbows up and and down my arms, and also showed up first on the insides of my knees, then the outsides and back, and then around my ankles. Always on both sides. Now a bit down the sides of my calves. And onto my hands. My sheets brush against it in the night and aggravate the itch (but as long as I don't scratch it's not terrible). And as bad as it feels to me, it also feels (and looks) way way milder than what some people suffer, so I guess I should be grateful for that. 

I had some symptoms for months, but this all took a turn for the worse about a month ago when I ate a rotisserie chicken from the local grocery store. Immediate skin reaction. I called them to ask what's in the spice mix, and besides the vague "spices" (which could include anything), they also listed MSG. Does anyone else get symptom flares from MSG? 

Putting a few things together... my boyfriend comes from a fishing family, so in addition to getting more cross contamination since we've been together, I've also eaten a LOT more iodine rich foods. 

This is also a warning tale for people not pursuing a diagnosis. I didn't try hard enough 8 years ago to get one, but in my mind I decided I probably wasn't actually celiac yet, and so while I did strictly avoid gluten, I didn't go all the way. For a long time I actually got digestive symptoms when I would get cross-contaminated, so I tried not to. But in the past year my digestion has actually improved a lot, so I made the mistake of thinking I was better... and stopped being so careful about it. BOOM, rash. If I could go back, I would keep eating gluten and keep asking for the right testing. They didn't do a proper blood panel on me. Doctors were way less savvy in 2008. 

susan french Rookie
susan french
Posted

Get to a dermatologist and be checked again.  My DH started off with itching, so severe that it was making me crazy.  Until it got to the tiny, pimply-like blisters, he couldn't make a definitive diagnosis after a skin sample.  It was DH.  It can be treated with dapsone, a sulfa derivative.  However, I was allergic to it.  Meantime, I began studying celiac.  He sent me to a gastro doc who did the tests, and endoscope.  I was diagnosed with celiac.  I am completely gluten free, no cheating.  You have to stay away from wheat, barley, rye, and to be extra careful, oats.  I will do anything I can to avoid the skin flareups.  A certain percentage of us also react to oats.  I can't even use Aveeno products.  I still suffer from time to time with severe itching and burning.  Most of the time during stressful situations, the itching is worse.  I have also been diagnosed with bullous pemphagoid, like celiac, an autoimmune disorder with large blisters randomly appearing anywhere on the body.  It is treated with steroids.

I would guess you still use oats.  As you said, alcohol makes it worse--if it is barley, wheat, rye, or oat based you can have a reaction.  (Corn based whiskey probably is ok if you enjoy the occasional libation)

First see the dermatologist!

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canuckchick Rookie
canuckchick
Posted
  • Author

Update: After just 3 days low-iodine, and 5 days being completely militant about avoiding cross-contamination, plus a few doses of niacin... oh and liberal use of Cliniderm lotion (that's Vanicream in Canada)... I am MUCH better already. Today is the least itchy day I've had in months. What a huge relief! At this rate, by the time I get in to see my doctor on Tuesday I won't have much to show him. I will probably never get an official diagnosis at this point but I feel pretty convinced myself. 

I am super grateful for this forum -- I learned *everything* here, after months of searching online in vain. It wasn't until my elbows broke out in a rash that any of my google searches turned up the possibility of DH, so I guess I can be grateful for that! 

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