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

Scalp Blisters

irish11

By irish11
in Dermatitis Herpetiformis

Recommended Posts

irish11 Apprentice
irish11
Posted

Hi there.

 

Irish here.  I finally got a real dapsone prescription and have been on it for about a week.

 

My question is, is it normal for them to be squishing out as much as ever? Seems like they are softer now, not as hard, but continuing....I have been on 100 mg. for about a week.  Maybe too soon?

 

seems the face ones are better, and the back ones are medium right now...

 

I just don't know if thats normal or not.  Should it be working by now?

 

It seems like my whole scalp has them....first left side then right side, then down the middle of my head then left then right, then lower area (where they accumulate alot, which i attribute to having your head up all day and they just accumulate there?)

 

the scalp ones are my worst thing right now, followed by back.....

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

How long have you been gluten free? Have you eliminated gluten ingredients from hair care products? It takes a while for the antibodies to leave the skin. I imagine it would take a while to heal even with the dapsone. I don't know for sure as I wouldn't let them give me a script for it. Hopefully someone who has taken it will reply with a time frame for you soon.

I hope you get some relief soon. Be sure not to skip any of the blood work that you need to have every few weeks to check your liver function isn't being impacted by the drug. 

irish11 Apprentice
irish11
Posted
  • Author

Hi Ravenwood.  On april 23 it will be 3 months gluten-free.

 

Today I was horribly blistered on my back again.  I know its not gluten because I am so tired of it, I'm pretty much doing paleo diet right now.  In other words NOTHING.  no soy, no grains at all, no dairy...nothing....im existing barely on  plain unflavored protein and fruit and veggies, and they still come.  What a horrendous disease this is truly.  just horrendous.  Wishing for some relief....I almost don't believe any will come.  But I keep going.  What else can i do?  I'm 5'8.  When i went gluten-free i was 152 pounds, today i am 133 pounds.

 

And nothing works.  I've considered not eating at all but I guess that would be anorexic.  I look it anyway pretty much, ha.

 

Its all i can do to get to work every day...i barely can do it.  I never want to do it I am in so much pain and embarrassment.  But what can I do?  I need the job.  Hopefully someday...one can dream right?

Archived

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

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


  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748
    melindakathleen
    Newest Member
    melindakathleen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: 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/   
×
×
  • Create New...