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

Rash - Is It Related To Celiac


rain

Recommended Posts

rain Contributor

I have a rash over much of my body that is not dermatitis herpetiformus. At first I thought it was exema from sun exposure (which I get) but this is behaving very differently. I have had it for 4 months. The skin burns and itches intensely. It is disrupting my sleep and limiting my movement. Cortisone cream does not help. I've been trying natural alternatives (yogurt, onion, aloe, turmeric) which have helped reduce the inflammation but not cured. I have no idea what this is, but I do have a doctor's appt scheduled for next week. I'm otherwise doing very well in terms of digestion, mood, and energy.

My thought was that this was a toxin release but this seems to intense.

I'd appreciate any insights - thanks.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I have a rash over much of my body that is not dermatitis herpetiformus. At first I thought it was exema from sun exposure (which I get) but this is behaving very differently. I have had it for 4 months. The skin burns and itches intensely. It is disrupting my sleep and limiting my movement. Cortisone cream does not help. I've been trying natural alternatives (yogurt, onion, aloe, turmeric) which have helped reduce the inflammation but not cured. I have no idea what this is, but I do have a doctor's appt scheduled for next week. I'm otherwise doing very well in terms of digestion, mood, and energy.

My thought was that this was a toxin release but this seems to intense.

I'd appreciate any insights - thanks.

My best guess would be an additional food intolerance, especially if it developed after you stopped eating gluten. I had several different intolerances manifest themselves as rashes, itchy rashes, and hives after I went gluten free. Among them - soy, potatoes, citrus.

Check what you have been eating and see if you have been consuming an abundance of any one thing, and try cutting it out and see if it helps, Or it may be more than one. Soy is often an intolerance that accompanies gluten and that is where I would start. It cold also be a problem with dairy. Eliminate a whole food group, like dairy, for four days and see if you see some improvement. Then try another until you come up with an answer.

ravenwoodglass Mentor

Why are you so sure it is not DH? It sure does sound like it. Have you checked all your topicals for gluten ingredients? Just in case it is DH do you consume iodine in salt or supplements? Also distilled gluten grains in alcohol or vinegar will flare my DH although most can tolerate it.

If it is for sure not DH do you use sunblock? In my case there is not a single one I can use without problems.

rain Contributor

Thanks for your ideas. I have looked at the possibility of other foods but maybe not enough? I have cut out soy. I have taken dairy out and when that made no difference I put yoghurt in for the probiotic. I can take it out but I don't expect that to be the problem. I have reduced corn. I had a dermatologist check it to see if it was DH - it's not. And the rash isn't consistent with DH descriptions. Hard to say what this is.

  • 4 weeks later...
rain Contributor

I finally got a prescription for a mild steroid from my internist. Also we had some cloudy days. The rash cleared right up - in 2 days tops.

The sun came back out and the rash is back, first the bumps, then the insane itching that keeps me up at night and the herpes simplex blisters (cold sores) all around my mouth and nose. Ahhhh!!!!!!!!! I'm so frustrated.

I see the gastro doc this week and am making an appt to see the dermatologist.

On the DH forum I read that feeling better from the DH meds is a good indicator of whether or not it is DH. I'll ask the gastro about that. If it's a food allergy I'm going to lose my mind - I really can't figure out what other allergens it might be. I can guess maybe potatoes..but really, I think I just don't like them much.

I do feel better in other areas day by day, particularly mentally, but I am SO aggravated by this sensation that everything is a possible trigger.. I'm going to try out the support groups. I might feel better with company.

Thanks!

ravenwoodglass Mentor

I finally got a prescription for a mild steroid from my internist. Also we had some cloudy days. The rash cleared right up - in 2 days tops.

The sun came back out and the rash is back, first the bumps, then the insane itching that keeps me up at night and the herpes simplex blisters (cold sores) all around my mouth and nose. Ahhhh!!!!!!!!! I'm so frustrated.

I see the gastro doc this week and am making an appt to see the dermatologist.

On the DH forum I read that feeling better from the DH meds is a good indicator of whether or not it is DH. I'll ask the gastro about that. If it's a food allergy I'm going to lose my mind - I really can't figure out what other allergens it might be. I can guess maybe potatoes..but really, I think I just don't like them much.

I do feel better in other areas day by day, particularly mentally, but I am SO aggravated by this sensation that everything is a possible trigger.. I'm going to try out the support groups. I might feel better with company.

Thanks!

Have they ruled out Lupus? Are you on any meds that cause sunsensitivity?

mushroom Proficient

I finally got a prescription for a mild steroid from my internist. Also we had some cloudy days. The rash cleared right up - in 2 days tops.

The sun came back out and the rash is back, first the bumps, then the insane itching that keeps me up at night and the herpes simplex blisters (cold sores) all around my mouth and nose. Ahhhh!!!!!!!!! I'm so frustrated.

I see the gastro doc this week and am making an appt to see the dermatologist.

On the DH forum I read that feeling better from the DH meds is a good indicator of whether or not it is DH. I'll ask the gastro about that. If it's a food allergy I'm going to lose my mind - I really can't figure out what other allergens it might be. I can guess maybe potatoes..but really, I think I just don't like them much.

I do feel better in other areas day by day, particularly mentally, but I am SO aggravated by this sensation that everything is a possible trigger.. I'm going to try out the support groups. I might feel better with company.

Thanks!

Two thoughts aroused by your post. First, do you use sunscreen? I develop a photodermatitis to sunscreens after I have been using them a while, and have to change to another. It produces an itchy dermatitis which does respond to steroids. I have just had this happen again.

And second, potatoes gave (give) me rashes and hives. The nightshade family can be a problem.

Just tossing these out for your consideration. :)


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



Celiac.com Sponsor (A8-M):



rain Contributor

Two thoughts aroused by your post. First, do you use sunscreen? I develop a photodermatitis to sunscreens after I have been using them a while, and have to change to another. It produces an itchy dermatitis which does respond to steroids. I have just had this happen again.

And second, potatoes gave (give) me rashes and hives. The nightshade family can be a problem.

Just tossing these out for your consideration. :)

Sunscreen - I do use sunscreen but am aware of the possibility of an allergic reaction, so this time was a trial to use sunscreen and see if it would make a difference. Plus, even though the rash started on my face it has spread to areas that were not exposed to sun.

I've gotten rashes on my belly from food, but all over? Is that possible? With that much itchiness? Of course this all started after I went off gluten so I guess it could?

Thanks for your thoughts. It's so helpful..

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.