DH Coeliac?

[FionaGFG]

How did you get diagnosed with DH? We often focus a lot on other coeliac symptoms. Tell us how you got diagnosed with DH?

[justjake]

Hi Fiona

I was finally diagnosed after presenting at my GP surgery with the chronic "water blister" rash on my knees,elbows,groin,head and between my buttocks.

It took around 12 months of being treated for other things before finally being referred to a dermatologist who on first examination said if it is what she thought it was it was very rare and she took biopsies that day which proved positive.

Interestingly I was asked if I would be willing to attend another hospital as a teaching aid.

I did and only one out of 40 GP's correctly diagnosed the condition.

I was diagnosed coeliac disease after this diagnosis.

I have been diagnosed for around two years now and still have to take 100mg Dapsone daily and around every third day I still get a chronic itch [no blistering] and have to take hydrozine hydrochloride and Betnovate scalp solution to counter this.

I feel it took a long time from first presenting myself at the doctors to diagnosis and wonder if this is because of their reticence to referring on?

Dave

[1stgls]

I went to my GP with fatigue, neuropathy, massive water blisters in my mouth and "dermatitis" My switched on gp did the "coeliac" blood test= positive----sent for gastroscopy, and the gastro chap took one look at my elbows and knees and said it was DH I am really careful with my diet but within 1/2 an hour of eating gluten my elbows start to drive me mad,, I found rubbing in Bio-oil helps keeps the "dead" skin on the blisters supple so the skin underneath has longer to heal before it has contact with air.

I am one of the really odd ones and gluten makes me constipated!!!!!!!

[anniet]

Its interesting to read this.

I haven't been diagnosed coeliac, the endoscope proved negative, some sensativity but not damaged. having a colonoscopy next week to try to fiind out why I have anemia/low vits and no ferritin

I have auto immune thyroid and have the blisters/ skin problem on my face.

I eat a minimal gluten diet now but it looks as though it might be best to give it up altogether. My face was glowing after normal bread yesterday.

I also have bad constipation even though my thyroid levels appear to be well within range now. It does seem that we are all quite similar with this auto immune business.

Takecare

annie

[alansheffield in reply to anniet]

Hi Anniet,

Search "Dermatitis Herpetiformis" on Google, this will explain the blistering. The only cure is a STRICT GF diet. I too was always extremely constipated, with short terrible, but occasional bouts of diarrhea until I began a GF diet. My skin is now clear of blisters and scarring and my bowels are fairly regular. I see so many messages here from people who do not know of DH and would be helped if they did. It is very rare in the general populace. Hope this helps. x

[Jacks]

Was misdiagnosed with psoriasis, eczema, hives, allergic dermatitis - depending on which doc I saw (yawn). I had a cupboard of steroid creams and lotions for my body and scalp. OH bought allergens free products (like no sodium laureth sulfate) but the problems remained. I'd had gut problems all my life but never connected the two. The 'psoriasis' blisters started becoming really bad - my knuckles, elbows, forehead, groin, back, head and then legs and toe pads were covered. GP locum asked me about my gut [?] did coeliac blood tests which were positive. Skin diagnosed by a dermatologist (although they thought it was something I'd been bitten by abroad!) was told to go away and start a GF diet. GP told me I needed to see a gastroenterologist who would get me a dietitian and help (yeah - only if I did a gluten challenge). Buckled in, did challenge, endoscopy diagnosed CD.