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

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
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.