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Eating Gluten Pre-Test? & Ears Hurting?


jjchenoa

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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.


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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.


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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