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Hives And Celiac

culhanegirl

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culhanegirl Newbie
culhanegirl
Posted

Hi everyone,

I just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely.

For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that hell than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! Tina

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RiceGuy Collaborator
RiceGuy
Posted

No doubt there are skin condtiions accociated with Celiac. One of the most common is called Dermatitis Herpetiformis. Here's the link to the forum on that, in which you might find out additional information that may help you. Open Original Shared Link

Welcome to the board!

culhanegirl Newbie
culhanegirl
Posted
  • Author
No doubt there are skin condtiions accociated with Celiac. One of the most common is called Dermatitis Herpetiformis. Here's the link to the forum on that, in which you might find out additional information that may help you. Open Original Shared Link

Welcome to the board!

Thank you for responding. I am aware of Dermatitis Herpetiformis and wanted people to know that hives can also be a symptom so that if they are googling hives my post may come up and they might investigate if Celiac may be the issue for them. There is research linking hives and Celiac but it is still not included in the symptoms list of many web sites containing information on Celiac disease.

  • 5 years later...
EWeatherman Newbie
EWeatherman
Posted

I know this is years after the original post, but I just found out after suffering for years with "Chronic" hives that I have celiacs.  Every time I went on the Candida diet my hives would quit, but my doctor just told me it was because I went on an all protein diet, unknowingly removing the problem.  This can be very frustrating, but you have chronic hives, do yourself a favor, get checked for celiacs.

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  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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