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

New Dh Locations

ndw3363

By ndw3363
in Dermatitis Herpetiformis

Recommended Posts

ndw3363 Contributor
ndw3363
Posted

I've been gluten free for 3 weeks, but I keep getting new DH lesions. Before I knew what it was, I would only get it on my elbows, wrist and fingers. Now, all those spots are completely clear, but I have new (and intense) ones on my chest, back, and in/around my ears. I seem to get a new one every day. I've cut way back on salt (because of the iodine connection) and have been very careful about gluten. How long does it take before this gets easier? I know that I can continue to get new ones for quite some time, but this is getting out of hand.

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

Celiac.com Sponsor (A8-M):


itchy Rookie
itchy
Posted

The factors that create these lesions hang around a long time, and I don't think that they necessarily clear at the same rate from various parts of the body. My worst and some the the earliest lesions are now just faint red spots that don't bother me any more.

But there are a few others that have come at various times, including quite recently, which continue to sting and itch. The itchy ones are on my scalp and won't go away. Aside from refusing to go away, they don't seem much like my DH lesions. So I'm wondering if they don't relate to some factor of my new diet rather than gluten.

Just going by MY EXPERIENCE I would say that things will get easier after a few weeks of being strictly gluten free. But frustratingly, while some people get better after a short time, many will experience problems for a year or even several years.

rosetapper23 Explorer
rosetapper23
Posted

Just want to add that the salt isn't the problem, since it's iodine that can cause DH. Do you mean that you're cutting down on salty foods outside the home? Non-iodized salt is safe to use, but you just have to be careful with any salted foods like crackers, chips, nuts, popcorn, etc. Also, dairy (unless it's organic) can be high in iodine, and seafood, eggs, and asparagus also contain high amounts. Since you maintain that you're eating a gluten-free diet, I definitely suspect that you're ingesting some iodine.

ravenwoodglass Mentor
ravenwoodglass
Posted

Have you made sure you hair and skin products are gluten free? If not you may want to do so. While it is considered that gluten can not be absorbed by intact skin it can be absorbed by mucous membranes so IMHO it is better safe than sorry when you have active lesions.

  • 2 weeks later...
ndw3363 Contributor
ndw3363
Posted
  • Author

I'm just so irritated!! My skin has NEVER been this bad. I few itchy patches here and there before I went gluten-free and now it's EVERYWHERE!!! Just found a couple on the back of my hand, back of my knees, calves, completely covering the back of both legs, back of my neck....

I just don't know what to do. The longer I am gluten free, the worse it gets. I have cut WAY back on dairy and completely cut out eggs (iodine connection) and still, I get a new one every single day. I know that it can take years to completely go away, but shouldn't it start to get better at some point?? The logical part of me knows that ultimately, this is good for my health. But then there's the defiant side that wants to just eat a slice of pizza or a breadstick since I'm already getting worse everyday. This is just not good for my depression :(

Hopeful1950 Explorer
Hopeful1950
Posted

I've been gluten free for almost 10 months and here's my experience: When I initially went gluten free, it seems like I almost "de-toxed" and the DH got worse before it got any better. I am still fighting it even though I am being very careful. I did discover some sources of iodine that were getting me and have rectified that situation and now I seem to be dealing mainly with old lesions and damaged skin that will take some time to clear up. I still do get a little bump or two here and there every few days for no known reason, but they seem to fizzle out in a day or two.

One thing I have figured out is that processed gluten-free foods seem to do wierd things to me. When I read the ingredients there are many strange things in them so maybe my bod is freaking out on the new, unknown things. I finally just decided to prepare all my food myself and that, combined with control of the iodine, has made a big difference.

Remember that when you eat gluten you will deposit more of those nasty antibodies in your skin and they will live there for a long time just waiting to erupt. DON'T DO IT!

I guess what I'm trying to say is to try and be in it for the long-haul. I suffer from chronic depression and so I definitely know where you are coming from. It is really hard to be doing everything right with no obvious reward. I look forward to the day when this will all be a fading memory! I can say that this forum has kept me going when I really wanted to just give up. These people are so smart and helpful...

itchy Rookie
itchy
Posted

I hope people continue to post on this subject.

Over the past few weeks my DH lesions have been on a strong healing trend and are now mostly just purple blotches that haven't stung or itched for several days.

But several sites around my hairline have developed sores that don't seem connected to the DH, have different symptoms. Unlike the DH, which is only a problem at certain times of the day, these sores are irritating most of the time. Various salves, creams, etc. help with the symptoms but nothing makes them go away.

Are they left over DH just taking longer to go away? Some separate syndrome? A result of dietary changes relating to my gluten free diet?

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

  • 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. Jay Heying
      - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    2. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    3. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    5. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748
    Jrgrimes914
    Newest Member
    Jrgrimes914
    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

    • Jay Heying
      Celiac friendly probiotics

      By Jay Heying · Posted

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • 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.