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

Has Anyone Had Severe Face Pain As A Result Of Gluten?


holiday16

Recommended Posts

holiday16 Enthusiast

I had an episode a few weeks ago where the entire left side of my face was in terrible pain. It was like all the nerves on one side were hypersensitive. Even blinking on that side would hurt. It really was the entire left side of my head and not just the face. It went away after a couple days and I had had an extended period of having gluten the previous week which I didn't realize until my daughter also reacted. It must have been something that had very low levels of gluten and we were having it every day so it was building up. Removed it and we were both fine.

I wasn't sure of the connection until I accidentally had a small amount of gluten and I noticed when I washed my face that night the left side was more sensitive again.

Anyone else have anything like this happen?


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

My Mom had terrible migraines from gluten including some hurting her face like that also numbness and just very odd things.

jerseyangel Proficient

When I first went gluten-free--like the end of the first week--I got really bad numbness and a very odd feeling in general on the left side of my face and in my left arm.

I remember it was a Friday evening, but I was concerned enough to call my doctor. Talking to her on the phone, and hearing that it didn't sound like anything urgent calmed me down somewhat. Even now, if I'm glutened, I get slight numbness on the left side of my face.

WW340 Rookie

There is a condition called Tic douloureux or trigeminal neuralgia that may be what you are describing. I kept having terrible bouts of this prior to diagnosis and going gluten free. I have not had it since.

I read an article somewhere that there was some relationship to celiac disease, but I can't find it now. It can affect the face only, or the face, jaw and neck.

You might look it up and see if it sounds like what you are experiencing.

Aligray Apprentice

I have not had a specific side numbness or pain. What i do have is this...when i am glutened, my face will become bright red w purple tints and it will burn and hurt terribly. My friends and coworkers know this about me. It will show up within the first 30 minutes and will stay for 3-4 days until the gluten is out of my system.

holiday16 Enthusiast

I guess it's good to know I'm not the only one that gets this and it could be associated with gluten. Bit relieved as it was such an odd symptom and very relieved that it went away! This is the kind of thing that would happen before going gluten free. I would get all these weird symptoms, but nothing was ever consistent. By the time one thing went away something else weird would show up. I can understand why as a Dr. it's so hard to trace down the cause when the symptoms are so sporadic and who would ever trace things like this back to a dietary issue!

holiday16 Enthusiast
There is a condition called Tic douloureux or trigeminal neuralgia that may be what you are describing. I kept having terrible bouts of this prior to diagnosis and going gluten free. I have not had it since.

I read an article somewhere that there was some relationship to celiac disease, but I can't find it now. It can affect the face only, or the face, jaw and neck.

You might look it up and see if it sounds like what you are experiencing.

I looked it up and this sounds an awful lot like what was going on. I have a Dr. appt. coming up and I'll mention it, but I think it will just fall in the category of odd symptoms I've had. I'm so thankful that it stopped because it really is incredibly painful. The description of wind blowing hurting the face really fits. We were in a store where the air was blowing and even that was painful. I ended up with a huge headache and taking Advil when we got home.


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



Celiac.com Sponsor (A8-M):



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. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    3. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    4. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748

    Dye42
    Newest Member
    Dye42
    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

    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • 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.
×
×
  • 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.