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

Hives And Celiac


culhanegirl

Recommended Posts

culhanegirl Newbie

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


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

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
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

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.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.