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

I'm Convinced It's Dh

krisb

By krisb
in Dermatitis Herpetiformis

Recommended Posts

krisb Contributor
krisb
Posted

After reading all the posts on DH I am totaly convinced that this is what I have. First of all it all cleared up when I went gluten free. My elbows have never looked so good. It's amazing how much they cleared up. Sometimes I get a little flare up but it isn't anything like it used to be. I used to get it on my toes, and fingers too. I just read a post about someone getting it on there belly. I used to get it there also. The allergist had once looked at it and said it was psorisis. The last time I went to the Dermatologist she suggested it was DH but didn't do a biopsy. Is it worth trying to get a biopsy now? I read that if they don't take it right you can get wrong results. I'm sure that the next time I get a little flare up it will take too long to get into the Dr. to do a biopsy.

All I know is, I see major results on gluten free.

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

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

How long after you accidentally eat gluten does it take for the rash to come back. If you really want a diagnosis you could plan on making a doctor's appt. and eat gluten the proper time before so that they erupt. I was just reading that to take a biopsy for G H that the biopsy should not come from the actual eruption, but from an area right next to a eruption. Good Luck.

jljeje Newbie
jljeje
Posted
After reading all the posts on DH I am totaly convinced that this is what I have. First of all it all cleared up when I went gluten free. My elbows have never looked so good. It's amazing how much they cleared up. Sometimes I get a little flare up but it isn't anything like it used to be. I used to get it on my toes, and fingers too. I just read a post about someone getting it on there belly. I used to get it there also. The allergist had once looked at it and said it was psorisis. The last time I went to the Dermatologist she suggested it was DH but didn't do a biopsy. Is it worth trying to get a biopsy now? I read that if they don't take it right you can get wrong results. I'm sure that the next time I get a little flare up it will take too long to get into the Dr. to do a biopsy.

All I know is, I see major results on gluten free.

Hi, just read your reply to my post and then found yours. It's kind of interesting that neither of our dermatologists did a skin biopsy, but diagnosed us with dh. Apparently, my rash was not in the right stage at the time. After being gluten free about 4 months ( and feeling so much better skinwise & all over), I'm back on gluten so I can have the biopsy, but sure am not feeling well. It's only been 2 weeks so far & am wondering how long it will take to get blisters again. I decided that I wanted to be 100% sure of the dx, but may second guess myself if this takes several more weeks. Since your small children are already diagnosed, I can see where you would hestiate to do the biopsy. In my case, my only daughter is grown with small children, and I can see some of my symptoms cropping up both in my daughter and my grandchildren. Also, both of my parents have had many of the gastric (not skin) symptoms, but diagnosed with other ailments.....So, I would really like to know for sure. Thanks for your post & wish me luck. jljeje

Pegster Apprentice
Pegster
Posted

I understand why you want to know for sure. I had seen pictures of dh blisters and thought it looked like what I had, but couldn't imagine that I was intolerant to gluten of all things. I never would have commited to the gluten-free diet without the firm diagnosis which I received from the skin biopsy. Too bad you have to go back on gluten if it makes you feel bad.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.