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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.