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

Got A Diagnosis

jeannine

By jeannine
in Dermatitis Herpetiformis

Recommended Posts

jeannine Apprentice
jeannine
Posted

I went back to my derm today. He is a resident and always needs to have someone else come in. Well, today he was able to bring in 2 doctors, both with experience with DH. They agreed, with out a doubt, that this evil, evil rash is DH. They told my doc to take 2 biopsies to make sure. They gave me some numbing ointment (heavy duty stuff) and said the biopsy will be looked at here in San Antonio and should have the labs back in a week. At that point, I should be able to start dapsone. I go back to gastro on 1 May to get the results of my duodenal biopsy.

The derm told me to start the gluten-free diet immediately.

I'm glad to finally have an answer (even if it did take 18 months!)

Jeannine

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

Celiac.com Sponsor (A8-M):


RoseTapper Newbie
RoseTapper
Posted

Jeannine,

I'm glad you were able to finally get a correct diagnosis! That said, you might consider whether or not you would like to immediately jump into taking Dapsone. It can come with some pretty heavy-duty side effects. Have you considered going on a gluten-free diet to see if the DH will clear up? Mine began healing the day after I corrected my diet and only reappears when I'm accidentally glutened. If the DH doesn't clear up, then you still have the Dapsone option. Just my two cents.

jeannine Apprentice
jeannine
Posted
  • Author

RoseTapper, I'll see how it goes with the gluten-free and I am hoping that the rash will clear on it's own. I originally broke out 18 months ago so I'm not sure how long it will take with the diet alone. It is getting hot here in Texas and I want to be able to wear shorts :) At least I'll have a week before I talk to my doc again to see if I notice any change at all with the rash.

Thanks for your reply! I'm glad to hear that someone noticed an immediate improvment for dh with the diet alone- that gives me hope!

Jeannine

flourgirl Apprentice
flourgirl
Posted

Hi there! I know just how awful DH can be! Mine cleared up pretty quickly when I started the diet. I DO, however, get flair ups by taking Ibuprofen....or if I eat anything salty. We switched to kosher salt (no iodine) and that helps. I can't have any salty chips or snacks, tho' because I get those itchy blisters! You may want to watch out for those things. I'm hoping that when my skin clears I can eventually be able to use salt. Good luck healing.

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad you got a diagnosis. I will agree with the others that you should do the diet before the drug. I had severe DH, my face, scalp, arms, legs, personal areas, back you name it I had blisters in one stage or another and they took literally months to heal. From day one of the diet I started to heal, by a week I had no new outbreaks coming and within 3 months my biggest sign of accidental gluten was that the rash would reappear for a few DAYS. It usually takes about 2 years for all of the antibodies to leave the skin, your skin will be extra sensitive to CC during this time, which I found helpful. I have found that once the antibodies were gone even when I do get glutened I only get one maybe two tiny little blisters. Do drop out iodized salt and be really sure to check shampoos, lotions anything that comes into contact with your skin as well as anything you eat. Be sure to check all meds and supplements also. You now know what the rash is and the diet will take care of it.

Archived

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

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


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    Carol Zimmer
    Newest Member
    Carol Zimmer
    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

    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • 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.