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

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

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

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

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

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

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

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.

  • 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. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    2. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    4. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

    • Total Members
      133,208
    • Most Online (within 30 mins)
      7,748

    Mike Maurillo
    Newest Member
    Mike Maurillo
    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

    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • 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.