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

Eating Gluten Pre-Test? & Ears Hurting?

jjchenoa

Recommended Posts

jjchenoa Rookie
jjchenoa
Posted

Hi I'm new here. I just came from the doctors (my endocrinologist, for low thyroid) and she is going to (blood) test me for celiac. I have experimented with the gluten-free diet on and off and am pretty positive I am at least gluten sensitive or intolerant. I'm excited that she's testing me but I have been gluten-free for 5 weeks. She says this doesn't matter, that the antibodies are in my blood anyway. I have only read the opposite, that I must eat gluten for a period before the test. I'm wondering what the opinion here is...and for how long must I eat gluten before I'm tested, if that's true.

Secondly, I've noticed while gluten free that my ear canals ache whenever I was exposed to gluten in the air! Like once I was boiling noodles for my family and another time my husband opened a beer under my nose and both times my ears ached. I thought I was imagining it until I began eating gluten again yesterday to prepare for my test and my ears hurt every time I eat it! So strange. Just wondering if it's common.

Thank you.

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

Celiac.com Sponsor (A8-M):


pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi I'm new here. I just came from the doctors (my endocrinologist, for low thyroid) and she is going to (blood) test me for celiac. I have experimented with the gluten-free diet on and off and am pretty positive I am at least gluten sensitive or intolerant. I'm excited that she's testing me but I have been gluten-free for 5 weeks. She says this doesn't matter, that the antibodies are in my blood anyway. I have only read the opposite, that I must eat gluten for a period before the test. I'm wondering what the opinion here is...and for how long must I eat gluten before I'm tested, if that's true.

Secondly, I've noticed while gluten free that my ear canals ache whenever I was exposed to gluten in the air! Like once I was boiling noodles for my family and another time my husband opened a beer under my nose and both times my ears ached. I thought I was imagining it until I began eating gluten again yesterday to prepare for my test and my ears hurt every time I eat it! So strange. Just wondering if it's common.

Thank you.

Well, I can tell you that I was gluten free for only 2 WEEKS when I saw my GI doc, and he said I needed to go back on gluten for 4-6 weeks to get an accurate biopsy result. I don't know how long you have to be gluten free before it would effect the blood results, but 5 weeks seems like long time and you risk getting falsly negative results. If you want to increase your chances of getting accurate results, and you can tolerate it, go back on gluten for 4-6 weeks, and then do the blood work.

It's funny you mentioned that you have ear pain...I have been having issues with my left ear since resuming gluten! It feels like an ear infection, but I have no other signs that it's an infection other than off and on pain. Makes me wonder if it's the gluten.... :unsure:

jjchenoa Rookie
jjchenoa
Posted
  • Author

Well, I can tell you that I was gluten free for only 2 WEEKS when I saw my GI doc, and he said I needed to go back on gluten for 4-6 weeks to get an accurate biopsy result. I don't know how long you have to be gluten free before it would effect the blood results, but 5 weeks seems like long time and you risk getting falsly negative results. If you want to increase your chances of getting accurate results, and you can tolerate it, go back on gluten for 4-6 weeks, and then do the blood work.

It's funny you mentioned that you have ear pain...I have been having issues with my left ear since resuming gluten! It feels like an ear infection, but I have no other signs that it's an infection other than off and on pain. Makes me wonder if it's the gluten.... :unsure:

Thanks for your response. For now I am planning to eat gluten until the end of September then take the test. Then I will go gluten-free again, whatever the results. I felt so good being off it.

Interesting about the ears! I would swear it's gluten-related for me. It's a totally new feeling for me that only began after I was gluten free for a couple weeks and does not occur without exposure so far. It just makes me wonder how many things are affected that we never suspect.

Thanks again, I did see one of your responses to a similar question after I posted.

89Mirageman Newbie
89Mirageman
Posted

Same thing here, off and on pain in my left ear. Seems my pain is also in my cheek as well. I was actually treated for an ear infection a few months ago so maybe its completely unrelated, I'm not sure. Had a checkup with an ENT about a month ago and he said that the infection is completely gone and I should not be having anymore symptoms. I told him about the ear pain, pain in my cheek and the light nagging headaches and he was clueless.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I get pain in my left ear, followed by a dizzy feeling if glutened. I never had that symptom before going gluten-free.

carecare Enthusiast
carecare
Posted

Strange that you mention this. I have been gluten light for months but completely gluten free the last couple weeks. I was out of town with family and had heavy gluten intake our first day away. The next morning I woke up with left ear pain...like an ear infection pain deep inside. It was off and on that day...especially when I'd eat something. I also have sensitivity on that side of my head...and down below my ear. The next day it was gone. I actually wondered if it was because I was eating such a large amount of gluten. My husband is gluten intolerant/celiac...and son just tested positive for celiac via blood test, daughter is also gluten intolerant/celiac....so that is why I'm mostly gluten free...and soon to be totally gluten free.

jjchenoa Rookie
jjchenoa
Posted
  • Author

Strange that you mention this. I have been gluten light for months but completely gluten free the last couple weeks. I was out of town with family and had heavy gluten intake our first day away. The next morning I woke up with left ear pain...like an ear infection pain deep inside. It was off and on that day...especially when I'd eat something. I also have sensitivity on that side of my head...and down below my ear. The next day it was gone. I actually wondered if it was because I was eating such a large amount of gluten. My husband is gluten intolerant/celiac...and son just tested positive for celiac via blood test, daughter is also gluten intolerant/celiac....so that is why I'm mostly gluten free...and soon to be totally gluten free.

Interesting too that you all have left ear pain! I have the pain in both ear/upper eustachian tubes but since your responses, I've noticed it more in the left. lol I suppose allergies also have ear symptoms, I just would never have thought that this would be my most prominent reaction, besides bloating....oh, it's killing me. I'm thinking about taking the blood test sooner and just forgetting about waiting a month. A month may not even be enough and I just can't go longer.

Well thanks for the replies, it's so interesting to me.

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.

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

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

      Gluten Issues and Vitamin D

      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/
    3. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    4. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      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 react...
    5. trents
      - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      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.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,215
    • Most Online (within 30 mins)
      7,748
    toni tay
    Newest Member
    toni tay
    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

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      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
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      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
      Guinness, can you drink it?

      By Butch68 · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      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.
×
×
  • 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.