Dermatitis Herpetiformis

[julie falco]

I am a 74 yr. old woman diagnosed 5 years ago with celiac.  I suffered with this dermatitis problem since I was 15 yrs. old.  I had severe itchy bumps on my knees elbows so bad I made them bleed and they still itched, also I got painful spots on my finger tips that were so sensitive to the touch.    Back in 1967 I had gone to Belview Dermatology clinic in Manhattan New York. They took a biopsy of my knee my inner hand and my elbow where I had these accruing spots or eruptions I had alll kinds of blood work done.  They had me before a conference panel of all Dermatology Dr's who would come in and read my chart examine my spots not one of them could figure out what it was.  Since being diagnosed with Celiac and not eating gluten I have never had one of these spots since. Hope this is helpful for many people and the Dr's and researchers.       🫶

[Scott Adams]

It's amazing that you were diagnosed way back in 1967! Many doctors still get this wrong, so it's great to hear that you've been able to stay healthy all these years.

[julie falco]

On 11/3/2023 at 2:54 PM, Scott Adams said:

It's amazing that you were diagnosed way back in 1967! Many doctors still get this wrong, so it's great to hear that you've been able to stay healthy all these years.

I wasn't diagnosed in 1967 that is when I had all tests done and they couldn't figure out what I had that was causing my issues.   I was diagnosed 5 years ago.  Which means back int he 60's they had no idea what I had.  

[Scott Adams]

That makes more sense! There was very limited awareness of this disease back in the 1960's, and not antibody tests for it. It's good you finally figured this out!

[night mare]

On 11/2/2023 at 3:20 AM, julie falco said:

I am a 74 yr. old woman diagnosed 5 years ago with celiac.  I suffered with this dermatitis problem since I was 15 yrs. old.  I had severe itchy bumps on my knees elbows so bad I made them bleed and they still itched, also I got painful spots on my finger tips that were so sensitive to the touch.    Back in 1967 I had gone to Belview Dermatology clinic in Manhattan New York. They took a biopsy of my knee my inner hand and my elbow where I had these accruing spots or eruptions I had alll kinds of blood work done.  They had me before a conference panel of all Dermatology Dr's who would come in and read my chart examine my spots not one of them could figure out what it was.  Since being diagnosed with Celiac and not eating gluten I have never had one of these spots since. Hope this is helpful for many people and the Dr's and researchers.       

Hi.  I was just wondering how long it took for it to clear up after you went on the coeliac diet. 

[julie falco]

It's amazing it took this many years to find out about this disease.       Grateful for the future generation.  I never noticed the connection of these outbreaks to celiac till maybe a year or so later .   I was like wow I just realized I haven't got any these itchy spots or the sores I used to get on my hands that were painful until they surfaced as a blood spot not painful that I used actual peel the layer of skin off that was at this point dead skin with a sign of blood spots in it .   Very strange  these were but never seen them since so I relate it to celiac.  it just has to be it's not a coincident that after stopping gluten that I never got either one of these.   Hope this is helpful to alot of people.   thank you for your response.

[Scott Adams]

I had the same realization after my diagnosis. Although the full-blown symptoms didn't happen with me until after getting sick on a trip to Europe when I was in my early 20's, I realized that many skin and anxiety issues that I dealt with when I was much younger were likely associated with what might have been, at that point, non-celiac gluten sensitivity. For me the trigger seems to be a virus I got on that trip, which put me over the edge into full blown celiac disease with classic symptoms.  

[hayley3]

On 11/4/2023 at 3:04 PM, julie falco said:

I wasn't diagnosed in 1967 that is when I had all tests done and they couldn't figure out what I had that was causing my issues.   I was diagnosed 5 years ago.  Which means back int he 60's they had no idea what I had.  

I signed up here in 2007 and just recently pushed to have my rash biopsied and it finally showed as Dermatitis Herpetiformis, It took me 17 years to get dx'd and I'm sure I had the rash before 2007.

[night mare]

Hi. Not been here for a while.

After more investigations it appears I don't have this condition. It's Grover's disease. I had never heard of it but it's none the less bad news. They don't know what causes it and the treatment up to now is not working.

The itching is unbearable. The next course of treatment will be some kind of photo light treatment. I have to have this 3 times a week at the hospital. And no guarantee that it will make any difference. I hope you get some kind of help with your diagnosis. 🤞

[Scott Adams]

Have you tried out a gluten-free diet to see if it helps with your Grover's disease symptoms? It may be a long shot, but gluten sensitivity has been associated with many skin conditions.

[night mare]

Hi Scott.

Consultant originally told me to follow a gluten free diet until my results came back from the biopsy. Even though I followed it religiously for quite some time it made no difference whatsoever.

 

[julie falco]

3 hours ago, Scott Adams said:

Have you tried out a gluten-free diet to see if it helps with your Grover's disease symptoms? It may be a long shot, but gluten sensitivity has been associated with many skin conditions.

yes Scott I have followed gluten free since I was diagnosed, and have not have an issue with this since.  Thank you for your concern.