Possible DH?

[tiggergi]

Hello,

I am new to this forum and thought I would finally ask my questions. in August of 2015 I started eating healthy. Meat, veggies, no refined sugars. Cut out soda and candy and the junk. I also cut way down on bread. I was eating a sandwich a day for lunch and now I take chicken. I still eat noodles and bread with spaghetti, but not much of the bread at all. I think I am generally healthy. I have always been very low on iron, tired during the day, my nails are especially brittle the last few months, hair is fine, I am gassy when I eat but only bloated if I over eat. Bathroom habits seem to be normal.

In early April of last year I broke out in a rash on my elbows. Skin colored, just these bumps that were water filled blisters. They itched really bad, but not horrid like I am reading here. If I popped them the itch would be gone until they filled back up which only takes a few minutes. Both elbows identical until I basically scratched them to scabs, but more would just appear. Every once in awhile I would get one on the back of my hand at my knuckles. It was a tiny water filled blister that hurt like I had burned myself, and itched horrendously, but just one. These are the worst of all of them!

In October I went to my GP and she didn't even look at the blisters. Said I needed to have a blood allergy work up. I told her that from what I had read I thought it might be gluten. The only thing that baffles me is that I cut gluten out for about a week and there was no change. When I ate it again, I didn't have any severe reaction within 48 hours like I was expecting. Everything just stayed status quo. I am also tired all of the time, even with 8 hours of sleep but that has always been blamed on low iron my whole life. So she tested me for lots of things and everything came back normal. Even my iron level which has never been normal was. I asked about the gluten and she said no, that was not it as she tested me for wheat and I am not allergic. She told me to check my soaps and detergents, etc.

Fast forward to February and I am so sick of this. Rash has never gone away. So 3 weeks ago today I completely cut out gluten again. This time, after a week and a half the rash started to go away. After 2 weeks it is all gone - YAAY! Now I am at the end of week 3 and Saturday I wake up with 2 blisters on one elbow. I pop them and try hard not to scratch and by mid day they disappear. Sunday I wake up, elbows are fine, but I have one stinging blister on my knuckle. Was still there today (Monday) but now after popping it 3 or 4 times it looks like it is going away.

Does this sound like DH? My plan had been that if I got better by eliminating gluten then I just would not ever eat it again. I don't really need a diagnosis, I just want the rash to go away. It seems like it is from what I have read here. I know that I should probably just eat a bunch of gluten and see what happens, but I am afraid that it will just be mild and slow to happen so that I can't tell if that is truly it. I am frustrated as I am not getting the clear reactions that you guys get.  So far as I know no one in my family has ever had celiacs. My mother died of complications from diabetes, but no rashes or malnutrition while she was sick that we were aware of. Everyone else is healthy so far as I know. Should I stay off gluten and just see if I stay mostly rash free? Should I eat gluten and see what happens? I am not sure where to go from here. I thought this would be more clear cut. Just not sure what to do now.

[cyclinglady]

Welcome to the forum!  

Okay, I do not have DH, but I have a few suggestions.  

Read through our forum's DH section for advice and tips.  You are in a bit of a quandary because you have gone gluten free.  It is best to get tested (blood test, intestinal and skin biopsies) prior to going gluten free.  It is best because all the celiac tests will be invalid if you have been off gluten for even as little as two weeks.   A gluten challenge requires two weeks of consuming gluten prior to an intestinal biopsy and 8 to 12 weeks for a blood test.  I am not sure about a skin biopsy but tissue needs to be taken,not on but away,  from the blister (see the DH section).  I understand that it is hard to find a dermatologist who know exactly how to biopsy for DH.  You can see that your own GP is clueless.

So, DH is awful.  The itching is described as unbearable.  It follows no pattern after a gluten exposure.  You could be fine for weeks and then have a breakout and never figure out the gluten source.   It takes a really long time for antibodies to resolve when they are in the skin.  

The only way to know for sure that you have DH is to get tested as your rash could be anything.  But you have had some relief.  Only you can decide what is best for you.  But if you continue to be gluten free, you should stick to the diet for six months or longer.  It can take a year or more for the DH rash to stop flaring up.  

I hope this helps.  We do have a few DH members.  You might hear from them.  In the meantime read....read....read all that you can on the subject.  Look too, for a celiac savvy dermatologist or GI in case you do want testing.  Any MD can run the blood tests, but again, you have to be consuming gluten.

I wish you well.  

P.S.  Celiac disease/DH is an autoimmune disorder and not an allergy.  So, a negative on a wheat allergy test means you are not allergic to wheat.  It does not rule out celiac disease.  

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[tiggergi]

Thank you Cyclinglady. Yes, I really should have done more before I stopped eating gluten but I was not at all sure what to do and honestly figured that stopping it wouldn't work. I have learned a lot in the last few weeks and I still have soo much more to understand. I think that I need to find a good dermatologist that knows a lot about gluten. I really do appreciate the time you took to respond. 

[cyclinglady]

Believe me, I get what drives people to self-diagnose or to have to deal with inadequate medical advice.  My hubby went Gluten Free 16 years ago based on the poor advice of my allergist and his GP.  It worked though, but we will never know if he has celiac disease or not.  He will tell you that I get way more support from medical, family and friends with a formal diagnosis (four years ago for me).    But will he do a gluten challenge?  No way.  We know it makes him sick.  He can't work, we don't eat!  

Keep advocating for your health.  You are not crazy.  You are not a hypochondriac.  You deserve to feel well!