Willpower Fading

[ndw3363]

DH is the only thing I have found through my extensive research that matches my symptoms. I have had two biopsies done and blood tests. All negative - not one antibody. Everything else that I read fits with celiac and DH - but in the absense of an actual diagnosis, I'm having a hard time justifying staying on this brutal diet. Not that I'm a huge "carb" eater anyway, but I'm just frustrated. I'm tired of bringing my food, of saying "oh that looks wonderful, but I can't eat that", of telling people to change gloves, of not being able to just "grab a bite to eat" whenever I want. I'm not starving cause I've made A LOT of really great gluten-free foods - dinner is pretty simple. It's breakfast and lunch that I struggle with. And the constant itching. My dermatologist (who is supposed to be a DH expert) wants to run more tests to find out what this is. I'm up for it, but I'm just so darn irritated! I'm wondering if I shouldn't just do the gluten challenge and get re-tested. Sorry for the vent...

[itchy]

No need to apologise for venting. We've all been there.

These are my thoughts. If you are already on a strict gluten free diet, and you are not getting any relief, then perhaps it is worth doing the gluten challenge. But if you get a negative result, you still can't be certain it isn't DH, because there are many 'false negatives.'

I had 'typical' DH symptoms, like stinging and hurting more than itching, sores in lines, sores somewhat symetrical on the body, sores looking like the typical ones in the photos, with hard centres and surrounded by dark red or purple blotches, stinging worse in the evening, and I took that as enough diagnosis for me. At least that's what I assumed, and the problem has been abating over many months.

After becoming extremely strict with my diet, and learning the traps, I started to get relief fairly quickly. Nothing could persuade me to do a gluten challenge at this point.

Perhaps look at it this way. If you haven't found some relief from your diet then perhaps it isn't DH, or perhaps the diet isn't strict enough. If that's the case, perhaps doing a gluten challenge won't 'cost ' you anything. A positive test would give you peace of mind. In some places, like the UK, you can get free food on prescription if you have an official diagnosis.

Best wishes.

[Carol from NYC]

I, too, got negative results in my tests for celiac/DH -- blood test and skin rash biopsy. My rash was ultimately diagnosed as "lichen planus" yet, I will tell you, if I go near wheat or gluten, the rash reappears and presents exactly like DH. My dermatologist told me to avoid gluten if I find it aggravates the rash. She said, "You know your body best." I was the one who told HER about the correlation between DH and iodine. Going on a low iodine diet for two weeks, and reducing my armour thyroid dose (it's full of iodine,) dramatically improved my rash. Despite what the lab tests say, I know I have DH.

I hear you -- it's extremely frustrating not to have a definitive answer, but you'll have to find out by trial and error. If you eat pizza and the next morning the rash has blossomed and is burning, you'll know, no matter what the lab tests say.