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

Gluten Intolerance And Hives


mat-london

Recommended Posts

mat-london Newbie

I seem to have some kind of gluten allergy which produces hives/urticaria but I have tested negative for a standard gluten blood test.

I have not pinned down exactly what food type I am allergic to but bread definitely induces a reaction and so do breadcrumbs. White bread and supermarket bread seem to be worst. Pasta strangely does not seem to induce it, possibly because there is less gluten in it or it has been de-natured by boiling. It is complicated because the strength of the reaction is related to physical activity. I have learnt that if I sit completely still my reaction is milder and passes more quickly but if I am physically active for example playing football it gets significantly worse and develops into full blown anaphalaxis complete with breathing difficulties, loss of vision and sometimes physical collapse. It always starts with intense itching and welts / hives developing all over my body, especially in places which are under pressue e.g. around my trouser belt and legs, but also all over my chest and other areas. Luckily the reaction disappears completely within a short time, between 1 and 3 hours depending on how bad it got. I thought until recently that I had "excercise induced anaphalxis" which is a recognised condition but I now think that food and particularly gluten are involved. If I play football without eating anything in the previous 4 hours I am fine.

I am 52 years old and this response developed fairly recently within the last few years. I was able to consume huge amounts of bread earlier in life without any problem. I definitely have Coeliac syndrome in my family. My grandmother was confirmed with it late in life and I also have 2 sisters who are confirmed coeliacs. I think my mother is also but she never wanted to find out. But I got a negative result in a standard coeliac blood test and I don't seem to have the other common long term coeliac problems.

Does anyone have a similar condition or have any advice on this? (apart from go and see an allergist!)


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



Celiac.com Sponsor (A8-M):



roxieb73 Contributor

You know I ALWAYS broke out in hives as a child. I still do at least 3 times a week. We have never been able to pinpoint a cause but I bet it could be the gluten. :)

JaneWhoLovesRain Enthusiast

Oh Mat, I also have suffered from exercise induced hives, but not quite as bad as yours. My hives (big gigantic welts) are mostly on my thighs and rear-end and like yours much worse at pressure points. For me they occur mainly in the cold weather. Any kind of exercise will make them come out, even simple walking, but I have no problem with snow shoveling, probably because I am not moving my legs fast enough. Stopping whatever I am doing is the only thing that will make them go away. Increasing whatever I am doing makes things much worse. The only time I started running after developing the hives (because I wanted to get home FAST) they got much worse, it was difficult to breath and I got very nauseated, but I did not develop anaphylaxis.

I have heard that there is usually a trigger food for this, and oddly enough it is often celery. (I hardly ever eat celery). I've also heard one must both ingest the food and do the exercise in order for the allergic reaction to occur. Without both of those it won't happen. This has been happening to me since I was a teenager and I am now in my late 50's. I never attributed it to food until I gave up gluten 2+ years ago. Lo and behold, I found that I now rarely get hives when walking in the cold. Co-incidence? Could be but I doubt it. The only celiac test I have had is for dermatitis herpetiforms (this rash was totally unrelated to my hives) and for that I tested negative.

I don't think this would be considered celiac but moreso an allergy to wheat but like celiac the only solution is to stop eating it. I do have an allergist and told her about it - the only solution she had was to take an anti-histamine before exercising. She didn't seem to be interested in persuing it any further or giving me any allergy testing.

It's not a real common problem I've found, people look at me like I am nuts when I tell them I'm allergic to exercise. However, there is some good info on the web about it. I did a lot of research about 4-5 years ago when I found out so many in my family have this (between my siblings and all of our kids close to 3/4's of us have this).

Jane

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

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

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.