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

Wondering If I Might Have It?


Lamphead

Recommended Posts

Lamphead Newbie

Alright, I haven't seen many that fit my description around these forums or around the internet, but DH seems to match most of my symptoms, and I'd like to get any opinion I can get. Well, firstly I'm a 17-year-old Asian male, which is odd to begin with. The entire skin episode I've been through started about 3 months ago, I started getting sores here and there that were not healing too well. I've had flareups with excema before though, so I didn't think much of it, and there wasn't enough to warrant concern. I started to get scared when, after a month, it started to creep up on my arms and lower legs, which I have never had excema problems with. At this point, it looked so much like chickenpox that I was diagnosed with that, and as such I was told the treatment was to to sit on my hands and wait it out. Things when crazy when 2 months ago, I got my wisdom teeth pulled out (I was put under anesthetic and what not). At this point it pretty much out right broke out everywhere, except for my hands, feet, and inside of my legs. These were more of the blisters that were described on this forum. It peaked in severity a week after it broke out, and then it slowly began to leave my chest area and healed in certain other spots. In addition, after the breakout, I was prescribed the strongest topical steroids, I've taken a course of antibiotics, antivirals, and of course, after my doctor saw that it was receding in certain spots, he declared it to be infected excema and told me to apply creams consistently and that I would get better. He gave me 50mg of prednisone per day as well to give it a chance to heal...this, by the way, is the only thing that has helped me. After 2 days, everything but a few stingy spots had scabbed normally, and by the 4th day, I was feeling great (besides the fact that I could not sleep, I was constantly wired, and my face swelled quite a bit). Well, that would be too simple if everything were solved there, but I happened to party that day, the most important part of which being that I drank a significant amount of beer and alcohol beverages. The next day, I broke out in hives, and I was unsure if it was prednisone or alcohol, so I stopped both. The hives went away shortly, but my skin worsened slowly and slowly, until I was prescribed 15mg prednisone for a week to manage my condition. Well, it did exactly that, and after I went off, it stopped doing that.

That was a month ago, and my skin has worsened to what I believe looks a lot like DH. The sores have now evolved to this blister-like oddity that follows a cycle of oozing a distinct, odd smelling pus/liquid, elevating, drying up, then falling off if I either scratch it or I shower or it rubs off, then repeat. I do feel all the itchiness, although not so much burning or stinging, unless my skin gets really raw. It has left my face completely, except for a small spot around the ears, but after a second course of antibiotics which I was given by another doctor, I got blisters all over my hands and, to a lesser extent, feet (I suspect maybe this is an allergic reaction to the antibiotics). As well, I have pretty bad seasonal allergies, I had moderate excema before, and a cousin of mine actually had her skin problems cleaned up with a gluten-free diet as well. So I went to a doctor a little more than a week ago, and on sight, they said that my skin did not exhibit the classic signs of DH, and they did a skin biopsy, which they said could be used to test for DH. They're not wrong; my elbows, scalp, and buttocks have it pretty bad, but my knees are pretty clean, and I otherwise feel fully physically fine. Also, the amount of blood and pus that comes out of the sores/blisters means that everytime I wake up, I find my clothes soaked with tonnes of small patches of the mixture >_< I have to change clothes around the clock. If I'm not wrong, these aren't exactly typical symptoms. My worry is that, after surfing around the forums, I hear that this test can be inconclusive. Brr...that gives me the shivers...every doctor I've seen is pretty has been clueless as to what I have for the past 3 months. In fact, I'd be glad to hear that it's DH so I can move on. But say the test result, which should arrive in a few days, come back inconclusive; would there be a point in doing something else to attempt to get a confirmation? What else could it be at this point? As well, anyone else's input would be welcome. And thanks for reading this extended post!


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
Alright, I haven't seen many that fit my description around these forums or around the internet, but DH seems to match most of my symptoms, and I'd like to get any opinion I can get. Well, firstly I'm a 17-year-old Asian male, which is odd to begin with. The entire skin episode I've been through started about 3 months ago, I started getting sores here and there that were not healing too well. I've had flareups with excema before though, so I didn't think much of it, and there wasn't enough to warrant concern. I started to get scared when, after a month, it started to creep up on my arms and lower legs, which I have never had excema problems with. At this point, it looked so much like chickenpox that I was diagnosed with that, and as such I was told the treatment was to to sit on my hands and wait it out. Things when crazy when 2 months ago, I got my wisdom teeth pulled out (I was put under anesthetic and what not). At this point it pretty much out right broke out everywhere, except for my hands, feet, and inside of my legs. These were more of the blisters that were described on this forum. It peaked in severity a week after it broke out, and then it slowly began to leave my chest area and healed in certain other spots. In addition, after the breakout, I was prescribed the strongest topical steroids, I've taken a course of antibiotics, antivirals, and of course, after my doctor saw that it was receding in certain spots, he declared it to be infected excema and told me to apply creams consistently and that I would get better. He gave me 50mg of prednisone per day as well to give it a chance to heal...this, by the way, is the only thing that has helped me. After 2 days, everything but a few stingy spots had scabbed normally, and by the 4th day, I was feeling great (besides the fact that I could not sleep, I was constantly wired, and my face swelled quite a bit). Well, that would be too simple if everything were solved there, but I happened to party that day, the most important part of which being that I drank a significant amount of beer and alcohol beverages. The next day, I broke out in hives, and I was unsure if it was prednisone or alcohol, so I stopped both. The hives went away shortly, but my skin worsened slowly and slowly, until I was prescribed 15mg prednisone for a week to manage my condition. Well, it did exactly that, and after I went off, it stopped doing that.

That was a month ago, and my skin has worsened to what I believe looks a lot like DH. The sores have now evolved to this blister-like oddity that follows a cycle of oozing a distinct, odd smelling pus/liquid, elevating, drying up, then falling off if I either scratch it or I shower or it rubs off, then repeat. I do feel all the itchiness, although not so much burning or stinging, unless my skin gets really raw. It has left my face completely, except for a small spot around the ears, but after a second course of antibiotics which I was given by another doctor, I got blisters all over my hands and, to a lesser extent, feet (I suspect maybe this is an allergic reaction to the antibiotics). As well, I have pretty bad seasonal allergies, I had moderate excema before, and a cousin of mine actually had her skin problems cleaned up with a gluten-free diet as well. So I went to a doctor a little more than a week ago, and on sight, they said that my skin did not exhibit the classic signs of DH, and they did a skin biopsy, which they said could be used to test for DH. They're not wrong; my elbows, scalp, and buttocks have it pretty bad, but my knees are pretty clean, and I otherwise feel fully physically fine. Also, the amount of blood and pus that comes out of the sores/blisters means that everytime I wake up, I find my clothes soaked with tonnes of small patches of the mixture >_< I have to change clothes around the clock. If I'm not wrong, these aren't exactly typical symptoms. My worry is that, after surfing around the forums, I hear that this test can be inconclusive. Brr...that gives me the shivers...every doctor I've seen is pretty has been clueless as to what I have for the past 3 months. In fact, I'd be glad to hear that it's DH so I can move on. But say the test result, which should arrive in a few days, come back inconclusive; would there be a point in doing something else to attempt to get a confirmation? What else could it be at this point? As well, anyone else's input would be welcome. And thanks for reading this extended post!

Hi, and welcome to the forum. Sorry to hear you are having so many skin problems. They say the skin is the largest organ in our bodies and for me, also, it is the one that gives me the most trouble.

As for your specific lesions, I have never heard of (not to say it can't happen) DH bleeding when scratched (unless you scratch very hard). Usually the blisters seem be filled with fluid and collapse when the fluid is released. They also tend to leave a very purple scar which lasts for an extended period of time. This is the classic DH I have seen on my husband.

My first question would be about your biopsy: did they take the sample from clear skin adjacent to the lesion, or did they take the sample from the lesion itself? The first method is correct, the second will not produce a positive result even if you have DH.

Yes, the prednisone also wires me up and makes my face swell and I refuse to take it any more.

You say you had a major flare-up after you had your wisdom teeth pulled. This is common with celiac in general--trauma or stress of any kind either activates it or seems to make it worse. My arthritis seems to always flare up after stress. So, do you have DH? I have no idea. Celiacs often have eczema and often don't have any digestive problems; for some the diagnosis comes as a complete surprise. One path you might take is to request the celiac blood panel be drawn. While a negative would not rule it out entirely, it would be one more step on the path to diagnosis.

Sorry to not be of more help. Good luck on finding out what is wrong and getting well.

Rosewied Rookie

Lamphead,

I wanted to encourage you to get a blood panel as well. Particularly since you haven't begun a gluten-free diet yet. I have had serious environmental allergies my entire life. I have had spots determined to be eczema that have never left for more than a few months. My spots were not in the typical elbows and backs of knees. Mine have been on my stomach and the most persistent area has been my inner, upper arm, between my elbow and my arm pit. I've had some blood at the blisters, but like the last post said it's only if it's been really irritating and I've been scratching it too much. mostly it's just been little blisters with a clear secretion

I've been gluten free for a little over two months and VOILA! It has been gone for almost a month now. It's kind of weird because it's almost scarred where it was. I'm wondering if that will go away. any thoughts?

I'm so sorry for your pain and frustration. I really hope you're able to get to the bottom of this. Even if your bloodwork comes back negative, i'd say it's definitely worth it to try an elimination diet afterward. Particularly because of the family history. I had a blood test and duodenum biopsy. I didn't have a skin biopsy, but I'm going to have fun telling my dermatologist about my cure when I go for my mole check this year!

Meagan

Archived

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

  • 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. - Aretaeus Cappadocia posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      Pear Bread

    2. - Aretaeus Cappadocia commented on Amiah's blog entry in Amiah
      2

      Help!!

    3. - knitty kitty replied to Jmartes71's topic in Doctors
      12

      Second chance

    4. - Mari replied to Jmartes71's topic in Doctors
      12

      Second chance

    5. - trents replied to anya22's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,683
    • Most Online (within 30 mins)
      7,748

    Alaena
    Newest Member
    Alaena
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I adapted this to be a gluten-free recipe from www.tasteofhome.com/recipes/autumn-pear-bread. Wonderful flavor profile, great texture, fairly easy to make. The almond flavor from the almond flour complements the pear flavor. Ingredients 1 cup almond flour 1 cup sweet rice flour 1 cup millet flour 2 Tablespoons tapioca flour 1 cup sugar 1 ½ teaspoon baking powder 1 teaspoon baking soda 3/4 teaspoon salt 1/4 teaspoon ground nutmeg 6 tablespoons cold butter 3 large eggs, room temperature 3/8 cup buttermilk (1 tsp white vinegar + 3/8 cup milk) 2 teaspoon vanilla extract 1 ½ cup finely chopped ripe pears (1-2 med/large pears. You could peel them but I don't) Directions (optional) cut butter into pats, place on saucer in the refrigerator while prepping other ingredients In large bowl, combine flour, sugar, baking powder, baking soda, salt and nutmeg. (I use a whisk to mix) Cut in butter until mixture resembles coarse crumbs. (I use pastry blender) Combine eggs, buttermilk and vanilla (I use same whisk); stir into flour mixture just until moistened. (I use a mixing spoon) Fold in pears. (mixing spoon) Spoon into 2 greased 5 x 8 inch loaf pans Bake at 350° for 35-40 minutes or until toothpick inserted in center comes out clean. Cool for 10 minutes before removing from pans on to wire rack. Allow to cool completely. Not sure how long you can keep this at room temperature because it gets eaten quickly
    • knitty kitty
      @Jmartes71, I understand how frustrated you feel.  I have been disappointed with the medical system myself.  Have you read my story in my blog?   What can we do to help you get better?   Nutritional deficiencies are common in Celiac disease.  Have you been checked for vitamin and mineral deficiencies?   Which supplements are you taking?
    • Mari
      hi jmartes This is a link you can click on to see a form to fill out to obtain medical records from Kaiser. If you have already submitted this form  you could send in another one. . The form asks for your MR# and please remember to put in the name you were using before you were married.      How to Request Copies of Medical Record from Kaiser Permanente Form - Fill Out and Sign Printable PDF Template | airSlate SignNow
    • trents
      It would seem then that your next step should be a biopsy to check for damage to the villous lining of the small bowel. But you must not reduce gluten intake until that is performed else healing will take place in that area of the intestines and the biopsy results would be invalidated. 
    • knitty kitty
      Welcome, @anya22, Can you tell us more about your diet?   How much gluten containing foods did you eat?  What kinds of gluten containing foods did you eat?  What has your high calorie diet consisted of?   Some gluten containing foods contain less gluten than others.  Cakes and cookies may have less gluten than something like deep dish pizza.   Glad you're here!
×
×
  • 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.