Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Burning Skin


Sandra Lee

Recommended Posts

Sandra Lee Newbie

I have been sick with what I'm sure is celiac for two years now. I had been having itchy burning feet and kept thinking I had athletes foot. So I used the creams , did everything and it was still there. I went camping for a week, ate and drank alot of beer! I noticed I was really tired and cranky. I had really weird bowel movements the whole time! It was so hot the last day I felt like my skin was seriously frying like an egg on the hot pavement, and I was completely covered so my skin wasn't exposed! So, the next day went home and Bam! The bottom of my feet clear up to my knees were on fire! So the first doc said I was having an allergy attack but didn't know to what! so did steroids and felt better until they were gone, then it was back! I would get like red dots on my skin, but they were like under the skin. So, then they thought it could be my discoid lupus. After the bloodwork, the doctor said it could be the gluten, but you can't tell one auto immune from another. I have been off the gluten for a yeAr now and feeling alot better, but still struggle. I know I am completely celiac. I can't tolerate soy, and eggs even bother me. My blood test was negative, but they say it's hard to pick up on it in your blood. The more I read about it, I think it was coming on along time. Always had constipation then the other. Got put on thyroid medication 8years ago, joint pain, fatigue, mood swings, tingling and numbness in my hands and feet. Memory loss, the list goes on and on! Anyway, just curious about others. And how this really sucks!!!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Burning is one of my allergic responses despite the downplay the ER doctors gave about it (later confirmed by head of the allergy department). It would start at my ears, spread across my face, neck and sholders in its minor form. What did it do in its major? My whole body. It was terrible. It lasted for weeks until i figured out what was causing it (tomatos). I kind not i was taking about 3 or so benadryl per day when this was happening i was misserable.

I can certainly understand what you went through. This event took place before my dx of celiac. Shortly before this started my never stopping 'd' and nearly daily vomiting starting, along with fevers.

I was a mess. Now 1.5 years later, i'm quite healthy. At the moment, i'm still sort of getting over a stomach bug, but meh, thats easier then that mess i delt with before.

Marilyn R Community Regular

Hi Sandra,

You might want to check out the info here.Click here: LUPUS FOUNDATION OF AMERICA - General Questions about Lupus.

Are you seeing a good rheumy? Had your complement T3 and T4 levels checked? There is a slue of other tests, hope you don't have it but wish you well finding your path to healthiness.

IrishHeart Veteran

I had terrible burning sensations in my skin, face, scalp, trunk, feet, hands....EVERYWHERE....for 3 years and no one could tell me what it was. It started in January 2008. I felt like fire was running through my blood and I could not tolerate heavy clothing or a towel on my skin after a shower sometimes. It was just excruciating to live with. I could no longer sit in the sun. I was bright red (and I never had allergies in my life--and in fact, all allergy testing is negative) My bones/joints burned. The doctors thought I had lupus for a while, but testing was always negative.

The burning nearly drove me insane. It has only recurred when I am accidentally glutened. My doctor suggests it is a high histamine response from inflammation.

It took almost 15 months post-DX and being strictly gluten free for it to die down.

Many of your symptoms (and the association of thyroid disease and lupus with celiac) suggests you are a celiac.

Being off gluten for a year would probably make it difficult to diagnose you via blood work or biopsy now. And your doc is right; sometimes the blood work is falsely negative. :( It happened to me, too.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,589
    • Most Online (within 30 mins)
      7,748

    George Fisher
    Newest Member
    George Fisher
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Kipman, Ask for a genetic test to determine if you have any of the known genes for Celiac Disease.   Anemia, Thiamine deficiency and diabetes can each cause false negatives and low IgA.  You may want to investigate these further with your doctor. Celiac Disease can occur with Ehlers-Danlos Syndrome, another genetic autoimmune disease.  Ehlers-Danlos is a connective tissue disease frequently seen in people who are double jointed or have stretchy skin.  This stretchy-ness can affect the digestive system.   https://pubmed.ncbi.nlm.nih.gov/27321543/
    • knitty kitty
      Welcome to the forum, @Travel Celiac! You have to be consuming gluten for your body to trigger the autoimmune response and produce anti-gluten antibodies.  If you're not consuming gluten, the autoimmune response is not triggered and you won't produce anti-gluten antibodies.  Celiac Disease is genetic.  Your genes don't change.  You will always have the Celiac genes whether you eat gluten or not.   Your negative tTg-IgA  shows that you are successfully keeping gluten out of your diet.  You are doing very well on that point, but you still are Celiac.  Be proud of your accomplishment!  
    • trents
      I've never heard it said that celiac disease is a connective tissue disease. It is an autoimmune disorder that (classically) attacks the lining of the small bowel but we now know it can manifest in other body systems. It is also true that autoimmune disorders tend to cluster. That is, when you have one you often develop others.
    • Kipman
      I did for a week, though that was 4 weeks before I had the test done. The doctor told me the lab rang her and said they hadn't seen results like it in their lab. Them being nearly all indeterminate that is. I also tested positive for a multiple connective tissue disease but when they did further testing it was all indeterminate too (I've only just realised that celuac is a connective tissue disease)
    • trents
      So, it sounds like you may have already been avoiding gluten before the blood draw was done for the antibody testing. Is this correct?
×
×
  • Create New...