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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Desperate With Burning Skin
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10 posts in this topic

I am getting a little desperate. I have everyday periods of time when my skin is burning mostly my face and upper body. I am extremely heat intolerant. I have an irritable/sore throat and soreness under both arms. This has been going on for 3 1/2 months. The drs. here (I live in the Netherlands) cannot tell me what is wrong. I was diagnosed with IBS 12 years ago. I never had nor do I have a problem with diarrhea. I am occasionally constipated and frequently have gas and bloating.

The drs here can't tell me what is wrong. The ideas so far are: Its a nervous condition, I have a food allergy, I have leaky gut syndrome but no one is offering tests or solutions.

Have any of you had burning skin and heat intolerance as a symptom of your gluten intolerance.

Any ideas would be greatly appreciated

Larry

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Hi Larry and welcome to this board. Well, I've had burning skin, but it wasn't only from the celiac disease, I have other food intolerances, too.

You don't have to have diarrhea to have celiac disease, though. IBS is one of those garbage diagnosis the doctor gives you when he doesn't have a clue what's wrong with you, and is too lazy to figure it out. There is a reason for your bowel to be irritated. Leaky gut syndrome is also caused by something, and celiac disease always results in leaky gut!

Why don't you try going gluten-free and see if it helps? It could very well help your intestinal problems. But you might have other intolerances as well.

I would start with eliminating the gluten and dairy, and then go from there.

With me, the salicylates were the culprit when it came to the burning skin, and the sore throat was caused by lectins (gluten is one of them). The soreness under your arms could be swollen lymph nodes (which I had as well).

Follow the links in my signature to find out more.

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Rosacea can also cause a burning , scalded look & feel to the skin.I know before going gluten-free my rosacea felt & looked like I had been scalded.And anything could stir this demon up for me! Having just a normal conversation one minute , then bang my upper torso was on fire......

mamaw

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I get burning on my face, shoulders, and upper back. I dont know if I get it from gluten ingestion....for me its mainly from MSG and Sulfites. It also causes IBS symptoms, tissue swelling in my upper body and a bunch of other symptoms. Alot of aching in my shoulders and my whole upper body. The burning happens on my tongue too. Not fun at all. Oh yeah...I get the aching under my arms too....its swollen lymph nodes.

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Thanks to everyone for your input. Ursula, thanks for the info and the links. It is 29 degrees C here (84 F) and I am so heat intolerant. I feel as if I am burning up. Does anyone also have such extreme heat intolerance as a result of gluten or other intolerances? In the past I have always loved summer and enjoyed the heat.

Larry

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I used to be more heat intolerant like that. It seems better for me now though. High humidity and heat still get to me, but moving from Houston helped with the humidity issues.

When I was pregnant with my last baby I developed a rash similar to the one you are describing. It covered my ear, side of my face, neck, shoulders and upper arm. I couldn't stand to have anything touching it and this was in the late fall in Wisconsin. I was wearing a strappy tank top and no coat at 5-6 months pregnant because it hurt so badly to have anything touch.

Derm and my rhuem couldn't figure it out. It eventually went away after spending aboout $100 on various creams and ointments. None of whihc helped all that much. Ice packs proabably helped more, except then it was soooooo dry. I used a spray on cream (Eucerin) and kept myself slathered up with that.

Sorry i can't help anymore than that. Mine only lasted about 4 weeks. Good luck, I hope it goes away soon

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I am getting a little desperate. I have everyday periods of time when my skin is burning mostly my face and upper body. I am extremely heat intolerant. I have an irritable/sore throat and soreness under both arms. This has been going on for 3 1/2 months. The drs. here (I live in the Netherlands) cannot tell me what is wrong. I was diagnosed with IBS 12 years ago. I never had nor do I have a problem with diarrhea. I am occasionally constipated and frequently have gas and bloating.

The drs here can't tell me what is wrong. The ideas so far are: Its a nervous condition, I have a food allergy, I have leaky gut syndrome but no one is offering tests or solutions.

Have any of you had burning skin and heat intolerance as a symptom of your gluten intolerance.

Any ideas would be greatly appreciated

Larry

Hi Larry,

The skin burning was my primary symptom of Celiacs! It burned for me, just as for you, on my head, face and scalp mostly. The pain was unbearable. I once went to the emergency room for the agony (my first and only trip) because I knew that type of pain meant something very serious. I think presenting with burning rather than itching skin is why diagnosis took so long. Had I presented with hives or itching that might have been more in line with a traditional food allergy. My GP offered only to give me anti-depressants and did not express any curiosity about why my hair was falling out and my whole body sometimes felt like it was on fire, why I had so many gastric symptoms and why, at the time, I was bleeding rectally. Even when I scratched an itch, my skin felt like it was sunburned.

I have been gluten/casein/dairy/soy free for a few days now and the symptoms are moderating. With my naturopath's permission, I am taking an allergen free supplement to help heal my intestines and give my hair some vitamins!

Please keep heart! I am so glad you reached out! I believe my symptoms will slowly subside once my healing has some real traction.

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I have had burning skin for over a year now. It started out on my feet and progressed to my legs and then all over. I have discoid lupus so the doctor thought it turned systemic in my skin. I have red cheeks as well. I started to notice when i would eat i would burn. So,now i have cut out the gluten, for three weeks. It feels a little better, but still there.

I can't tolerate heat or the sun either.I think it may be a combo of my lupus and celiac. I go back to the doc on the 5th of Dec.

Can they test you for celiac?

When he first did my blood work, my glycoprotien was elevated. If you look that up they talk about the gluten and celiac.

I am sick of feeling this way!!

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I had an incident like you are describing with burning skin from using an herbal supplement with kelp.

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Hi, Larry...sorry you're having so many problems.

I can't help with the skin burning part of your question, as I've never experienced that, but the heat intolerance could be a sign of Grave's disease, which is an over-active thyroid. (It's an autoimmune disease like celiac, rheumatoid arthritis, MS, asthma, and many others.) It can be detected by a blood test, so maybe you'd want to do that to rule it out.

Regardless, I hope you find some help!

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  • Forum Statistics

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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