Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dermatitis Herpetiformis

julie falco

By julie falco
in Dermatitis Herpetiformis

 Share
Go to solution Solved by Scott Adams,

Recommended Posts

julie falco Explorer
julie falco
Posted

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.       🫶

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

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 Explorer
julie falco
Posted
  • Author
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.  

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

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 Rookie
night mare
Posted
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 Explorer
julie falco
Posted
  • Author

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 Grand Master
Scott Adams
Posted

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.  

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 months later...
hayley3 Contributor
hayley3
Posted
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 Rookie
night mare
Posted

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 Grand Master
Scott Adams
Posted

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 Rookie
night mare
Posted

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 Explorer
julie falco
Posted
  • Author
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.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,686
    • Most Online (within 30 mins)
      7,748
    Patricia M Robinson
    Newest Member
    Patricia M Robinson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ShariW
      GliadinX/Tolerase G

      By ShariW · Posted

      I recently traveled to Spain and Portugal. I was with a tour group, they knew I needed to be gluten-free and made sure the kitchens preparing the group meals were aware. But just in case, I took Gliadin-X with me and took it for every evening meal - and most other meals. The one time I got glutened was from lunch early in the trip - had to be from cross-contamination. I had not taken Gliadin-X before that meal, which made for a pretty miserable day. Learned my lesson... 😞 
    • Hummer01
      Diagnosis confusion

      By Hummer01 · Posted

      Hi trents, thanks for the response.  The 2nd opinion doctor said that if my CRP is still elevated at that time, he would advise me to look at Crohns/UC or another autoimmune issue. The colonoscopy I had this year seemed to rule those 2 out for now so he still believed celiac may explain it. No previous doctors have suggested any explanation for it even after calling to tell me it was a concerning result.  I guess it feels tough knowing I have positive blood testing, permissive genetics, and visible duodenum changes... and somehow it's NCGS instead of celiac. I'm still surprised the biopsies came back negative when the doctor was so sure they would be positive.
    • trents
      Diagnosis confusion

      By trents · Posted

      "He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body? "She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong! This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test. The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition. The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article: Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.
    • Hummer01
      Diagnosis confusion

      By Hummer01 · Posted

      Hi all, just wanted to post an update.  I have been gluten free for about 1.5 months now and seeing improvement already in the bathroom.  Recently I had a visit with another GI doctor for a 2nd opinion. He said that while my blood tests and scope are not a "slam dunk" for celiac, he believes it's more likely than not that I have it. His advice was to stay with a celiac-level gluten free diet (no CC) for 6-12 months then retest to make sure TTG-IGA is still negative. He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac.  Today I had a follow up with the original GI that performed the scope. She is confident it is NCGS and says I can still have gluten sometimes. When I asked about the visible duodenum damage, she said it is just "irritation" from gluten because the biopsies were negative. She also said that my positive EMA isn't valuable because it has "a high false positive rate."  I guess I'm having trouble reconciling the totally different advice from these 2 GI's. I want to believe the new doctor more at this point because what he said just makes more sense to me, and he gave an actionable timeline for possible next steps. Feeling lost and disappointed at this point and wanted to write it down here in case anyone has input. Thank you.   
    • knitty kitty
      Help!

      By knitty kitty · Posted

      @junell, Can you get a DNA test to look for genes for Celiac Disease?   Have you had your thyroid checked? Have you been checked for nutritional deficiencies?  Being on a restricted diet for so long and especially now since you are having symptoms can cause malabsorption resulting in vitamin deficiencies.   Talk to your doctor and dietician about supplementing with essential vitamins and minerals.
×
×
  • Create New...