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

Any Celiacs With Face Swelling?


kieranrachel

Recommended Posts

kieranrachel Newbie

Hi,

I was just wondering if theres anyone out there whose face and/or body parts swell up after eating gluten?.

My face has been swelling dramatically the last 3 or so months, particually after I eat gluten heavy foods (pasta, pizza etc)

Ive had the celiac blood test which came back negative, but after seeing another doctor she said my reaction is more likely an allergy to gluten then an intolerance. I cant see an allergist for another month even as an emergency case, I've been eating mainly gluten free (trying) but i find now even the smallest amount of gluten swells my face and especially my lips.

Does anyone else have this problem? and is it normal that I've only just developed this at 19?

Thanks

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



CindyRhea Newbie

I have the rash - but negative for DH. I've had the biopsy, which is negative for Celiace. I have been off gluten for 3 weeks. My face and lips used to swell when after eating gluten -- and my lips would also itch. Lips still tingle, but much better after 3 weeks of gluten-free.

IrishHeart Veteran

Hi,

I was just wondering if theres anyone out there whose face and/or body parts swell up after eating gluten?.

My face has been swelling dramatically the last 3 or so months, particually after I eat gluten heavy foods (pasta, pizza etc)

Ive had the celiac blood test which came back negative, but after seeing another doctor she said my reaction is more likely an allergy to gluten then an intolerance. I cant see an allergist for another month even as an emergency case, I've been eating mainly gluten free (trying) but i find now even the smallest amount of gluten swells my face and especially my lips.

Does anyone else have this problem? and is it normal that I've only just developed this at 19?

Thanks

Your doctor is confused. There is no such thing as a "gluten allergy", but you can have an allergy to foods that contain gluten : wheat, rye, barley. And an allergist will not diagnose a gluten intolerance. People use this phrase "gluten allergy", but it is really incorrect.

There are many differences between food allergies and intolerances and celiac. Please read up on this distinction so you know what you may be dealing with and what tests to ask for.

This article explains the differences between wheat allergies, celiac and non-celiac gluten intolerance.

Open Original Shared Link

To answer your questions, Celiac Disease has no specific age onset or limit. Babies and 70- year- olds are diagnosed with celiac all the time. I was finally diagnosed at age 54, but I was ill with it for most of my life--YEARS and YEARS--and was told it was various things, like IBS, GERD, Gynecological issues, arthritis, etc. etc....It depends on the triggering event that provokes the autoimmune response.

And yes, my face and eyes were swollen when I was very ill before my diagnosis. But I do not have a wheat allergy! It was a histamine response and an underactive thyroid prompted by the celiac, which causes wide spread inflammation throughout the body. I do not have this problem any longer, gluten free :)

It is not the same as an anaphalactic response to a food that provokes reactions like hives, difficulty breathing, sneezing, wheezing etc.

And to further complicate matters, unfortunately, a negative test result for gluten antibodies can be falsely negative.

Whether you have a gluten intolerance, celiac disease or a wheat allergy, the treatment is the same---a strict gluten-free diet.

Best wishes!

kdonov2 Contributor

I am gluten intolerant and used to wake up with swollen lips and eyelids. They would remain puffy for the 1st half hour upon waking. Now that I don't eat gluten anymore, I no longer have those symptoms.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.