Could this be DH?

[lou84]

I've been having strange health issues for the past year, flaresof strange neurological symptoms (jumpy vision, shaking, pins and needles) and also bouts of vomiting. I realised that I had reintroduced wheat after 6 years, because my digestive issues had cleared up after becoming vegan and I was able to eat it without diarrhea, pain, etc. My doctor recently did a blood test for coeliac after I mentioned this, which was negative, however I'd been vomiting for 3 weeks and I definitely haven't been eating as much wheat as required.

I've now got this horrendously itchy rash from my groin to lower stomach. I've had bouts of it in the past that took months of steroid treatment to go, the drs always just looked at it confused and said it must be eczema. I'm now wondering if it's dermatitis herpetiformis. It keeps me up at night and it looks almost like big welts/hives with tiny blisters in places. I've attached a picture.

I am so sick of going to the drs, I don't want to ask to get it biopsied if it's unlikely to be it, so any help much appreciated

[cyclinglady]

Since you are sick of doctors, consider the gluten-free diet.  Be sure to stay on it for at least six months.  

The DH?  Who knows?  DH visually mimics other rashes.  A biopsy is the sure way to a correct diagnosis.  You do have to be gluten for 6 to 12 weeks though.  

[lou84]

Thank you. Sure I can go gluten free but there is a difference between being coeliac and gluten free, with intolerances which is what I thought I had previously you don't have to be as careful because it doesn't leave lasting damage. My rash is currently getting worse and keeping me awake at night so looks like I'll have to get it looked at. It also seems I've only had one basic coeliac blood test rather than the whole panel so I'll be pushing for them all.

[cyclinglady]

I would say you might be experiencing lasting damage!  Dealing with DH (which is celiac disease that manifests in the skin) is horrible!  A strict, super strict gluten-free diet is advised.  It can years for the antibodies to clear out of the skin and it can erupt (flare) even when not exposed to gluten during recovery.  

See if you can get the complete celiac panel (stay on gluten) and consider testing for a wheat allergy (different from celiac disease).  If an allergy,  antihistamines should relieve symptoms.  

Please read the DH section and check out SquirmingItch, ApprehesiveEngineer, and Ravenwoodglasses suggestions.  They are wise!  

Edited August 21, 2018 by cyclinglady

[lou84]

Thanks very much fingers crossed I get answers soon. I've been referred to a neurologist and am pretty worried. I'll definitely be sticking to a strict diet if it helps.

Another thing I forgot to mention is I can't seem to absorb b12 and folate well. I've read this is another sign. I've had to supplement sublingually