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

Could This Be Dh?

JennShad

By JennShad
in Dermatitis Herpetiformis

Recommended Posts

JennShad Newbie
JennShad
Posted

Hi everyone, I'm new here. I have never been diagnosed as celiac or gluten intolerant, but for the past 6 years, I've come to my own conclusion that there is a good possibility I am. I do not have insurance, so going to the doc for multiple tests isn't an option. It took about 4 years for me to determine gluten may be the cause of the health issues I've been having. The first time I ever went gluten-free, and I say first time because I've gone on and off several times over these last 2 years, but the first time I took it out of my diet, I was a new person! But without an "official" diagnosis, I find myself around holidays or birthdays, talking myself out of it, thinking maybe it's all just in my head. I've had gastrointestinal symptoms for the full 6 years, hair loss, even tooth enamel loss! Muscle weakness and soreness, etc., etc., etc...I'm sure the roller-coaster of going from a gluten-free diet back to eating gluten, only makes matters worse. So after being gluten-free for some time, again, I decided to be in denial 6 weeks ago, right before Christmas, and start eating gluten again! Well now for the same amount of time, I have developed this insane "rash" that won't go away!

After living on benadryl for 4 weeks, I had to cave and pay to see the doc, the itching was making me lose my mind! The flares were severe, sometimes painful, and very widespread...always bilateral too...well, of course she didn't know what it was...sent me on my way with a treatment cycle of prednisone and zyrtec to take nightly...for...ever, I guess! That was 2 weeks ago. The rash remains, I have not had one rash free day, but the meds have lessened the severity and frequency of these flares....but since finishing the prednisone, it comes back a little more and a little stronger each day. I am still eating gluten currently, thinking maybe I should see if I can get this biopsied and checked for DH...and this way I would know for sure whether I'm celiac or not. I have just read that a biopsy positive for DH, automatically confirms a celiac diagnosis...which is a lot cheaper that a colonoscopy!

I've attached a few pics, this is very very mild and really doesn't give an accurate picture of how severe this has been....but I thought it would be worth a shot and see what others have to say. Any input would be appreciated! Thanks:D

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


zamm0 Apprentice
zamm0
Posted

Yes, could be. Infact I have DH and those pictures look very similar. I've had it for >2 years and it pre-dated my Celiac diagnosis by almost as much. Since going gluten-free four months ago I've now tested negatively for Celiacs i.e. the diet is working. I still have DH though, it's not too bad - elocon used very sparingly calms it down pretty well. I get it mainly on top of my back, shoulder, and abdomen at the sides, and head/face much more mildly. Used to get it on the legs too but not now for some reason.

KaleidoscopeDream Newbie
KaleidoscopeDream
Posted

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm not an expert by any means, and I only found out what I have is DH less than 2 months ago, but your spots look exactly the way mine did in the early stages. I've had this current outbreak for over a year now and have only been gluten-free for a few weeks at this point, but I've had some marginal relief after switching all my bath and body products to gluten free ones meant for sensitive skin. At the very least, my body wash has aloe as the first ingredient, so when the itching is really terrible I take a lukewarm shower and clean the rash gently and I have an hour or two of relief. It has also helped with the drying and peeling stage of some parts of my rash. I have also been trying to go low iodine as has been suggested on the forum here, but I think it's too soon to notice a change.

So, as I said, I can't diagnose you or anything, but the raised bumps and welts are very familiar to me, and I have confirmed DH with a dermatologist. I followed advice given here and asked the derm to biopsy healthy skin near the rash, so I definitely suggest making sure your doctor does that if you do decide to get a biopsy.

Good luck!

JennShad Newbie
JennShad
Posted
  • Author

Thank you guys so much for the input! Now I just need to find the right Dermatologist that will hopefully listen to me.

JennShad Newbie
JennShad
Posted
  • Author

2 Photos from last night/this morning flare

Open Original Shared Link

Open Original Shared Link

texas flood Newbie
texas flood
Posted

Dang...you should try to find a dermatologist that can get you in today. That's a pretty bad flare up. It looks like mine have in the past. I have an appt this afternoon with a derm.

JennShad Newbie
JennShad
Posted
  • Author

And this is mild! I'm searching for a derm with experience with DH...I'm having a difficult time.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,542
    • 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.