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

An Answer After 2 Years?


greensleeve

Recommended Posts

greensleeve Newbie

I've been trying to figure out what's going on with my skin for two years. The story will probably sound familiar. I got a cluster of weird bumps on my face, and they wouldn't go away. I've never had acne or other skin problems. The bumps slowly spread all over my face, ears, neck and scalp. I also developed hives all over and no amount of scratching worked. The itching is intense and awful. The facial bumps often look like mosquito bites, and sometimes they look like p%$#@#/crusty bumps. They sting and itch unbelievably. I've been to four doctors, I've had allergy testing, which was positive for wheat, eggs, peanuts and milk. I've stumped two derms, my GP and just quit asking the ENT doc. Allergy shots, antihistamines, anti-fungal, antibiotics, acne meds, rosacea cream....none worked. I am handed a steroid cream and told to rock on. The cream helps some, but the weird bumps return worse than ever when I stop. I know it is not good to use steroids long term. What's a girl to do? I've got to go to work and face my customers.

So, I continued my own research. Based on the fact that I am hypothyroid, had extreme Vitamin D deficiency, insomnia, dizziness, wheat allergy, and gas that would embarras a lumberjack...I found this forum and a wealth of info on the net. I think I might have found an answer, and it certainly warrants further research into this topic.

I'm not concerned with testing/diagnosis at this point. I'm sick of dealing with docs and being handed an RX for some other drug. I want to learn more about DH and eliminate gluten and see if there's any improvement.

I am very frustrated and very much appreciate all the info I've found on this forum.


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran
jmb002 Newbie

I am dealing with the same exact problem currently (although I have only had it for 3 months and am going crazy)! Hope you get some relief. I am still trying to get someone to listen to me and make a diagnosis rather than try and mask the symptoms with medications such as prednisone! I just started my second taper of prednisone and symptoms are coming back faster than ever! Good luck!

Jenn

GFinDC Veteran

To test for DH they take a biopsy sample of the skin next to a lesion., not the lesion itself. A positive for DH is a positive for celiac.

ciamarie Rookie

I agree with the others, sounds like you're in the right place! I did want to let you know that when I had it on my face a few years back, one thing that did help somewhat was proactive solution. Then after I got home from work I'd wash off the makeup and put some calamine lotion on the itchy areas. It helped enough that I only have some minor scarring on my chin; though I also did my best not to do much scratching.

greensleeve Newbie

Thanks everyone for the replies. The iodine connection makes a lot of sense to me. I have very low blood pressure and eat sea salt as needed at each meal. Will also cut it out and see what happens.

Jenn, I understand about the oral steroids. I can't tolerate them....found out the hard way. Sometimes cold water is the only thing that will make my back stop itching. I hope you find some relief.

squirmingitch Veteran

Help for the itch, sting, burn & pain of dh:


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

Definitely gluten can be a huge factor. However for me I have also had food sensitivity trouble with a variety of natural food chemicals--namely salicylates, amines and tannins. Hope you don't but just wanted to let you know its possible.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,993
    • Most Online (within 30 mins)
      7,748

    Kelly C
    Newest Member
    Kelly C
    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

    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
×
×
  • 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.