Jump to content

  • 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

Tori

By Tori
in Dermatitis Herpetiformis

Recommended Posts

Tori Newbie
Tori
Posted

After suffering for many years with severe intestinal problems, this summer my husband discovered information on celiac disease. It sounded exactly like what I'd been going through, but I wasn't ready to commit to a gluten-free diet. A short time later I went to my doctor because the lymph nodes on the right side of my groin were swollen huge and in horrible pain. She discovered a rash at the base of my tailbone and told me I had herpes! I told her it wasn't possible and she told me I must have gotten it from a toilet seat and sent me home with info. I went home and read the info (which said you can't get it from a toilet seat - duh!) I started taking the anti-viral meds she gave me and the next day the rash started itching so bad I thought I'd lose my mind. It went on for about 10 days despite taking the meds. Two weeks after I went to the doctor I got my test results back - negative. No other information. I decided to look into celiac disease further and read about dermititis herpetiformis which means "a skin condition that looks like herpes." That is what finally convinced me I had celiac disease. (Besides the fact that by then I was so weak I could barely lift my head from the pillow.) I've been on a gluten-free diet since then (that was in June) and have not had another episode since then and I'm regaining my strength and my health. At this point I've chosen not to have a biopsy so I'm treating it myself.

Interestingly, my grandmother went to the doctor recently for a horribly itchy rash "down there" and the doctor told her she had herpes! She freaked out! Of course her test came back negative too but I haven't been able to convince her to try a gluten-free diet. Has anyone else had the horribly embarrassing experience of being told you had herpes when it was really dh? :unsure: ( I had to come home and tell that to my husband. . . !)

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mom of 5 celiac Rookie
mom of 5 celiac
Posted

My daughter is 18 and she was told she had vaginal herpes. She had blood tests and they came back that is wasn't herpes. It may have been the cold sore type. I wonder is this was DH. She was diagnosed with Celiac disease 2 years ago. she ahd the biopsy and it was really positive. Man these dr. need to get with the program. She was really up set and we couldn't umderstand how she could have got this. Do you think it could be DH. DOWN THERE. She hasn't had anymore problems. She did take the herpes med and it cleared up. It is so weird. IT was really awful for her too. this is really interesting. Can you have DH as well as the intestinal part too?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,928
    • Most Online (within 30 mins)
      7,748
    Grams H
    Newest Member
    Grams H
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.