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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Voices And Other Noises
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16 posts in this topic

My oldest daughter who is 5 has been on a gluten free diet for approximately 4 months now and we had a situation the other morning that has me concerned. Twice this past week she told my husband and I that she was hearing voices or noises in her head, the first time I just brushed it off as dreams but having it happen again has me concerned. When my husband and I were looking back it is entirely possible that she had been subject to cc both the days. The first day my husband and his father went out together and had fried chicken and onion rings, when they got home my husband washed his hands, brushed his teeth and changed his shirt while his father only rinsed his hands. The second day she was with my grandmother all day, I sent food and my grandmother wouldn't give her anything I did not send, but thinking back she would have been eating gluten and then helping my daughter open her food. I guess my question would be is it possible that she was hearing voices and other noises because of gluten even though it was never an issue before? Her only other symptoms have been excema and occasional nightmares (after gluten free she now only has them with when major cc occurs). So is it possible that this was all from gluten?

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My partner was recently diagnosed with narcolepsy, which is currently considered an autoimmune condition as well, and many people on the Narcolepsy Network report doing better after going gluten free. I mention this because the only condition in which it is common to "hear voices", besides schizophrenia, is narcolepsy. You may want to ask your doctor about having your daughter checked for narcolepsy via MSLT (sleep study). Vivid nightmares are also a common symptom of the hypnopompic and hypnogogic hallucinations associated with narcolepsy. Just a thought!

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Thank you, I will definitely mention that to her doctor.

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She's only five..creativity goes a long way. :D

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Very good point. I think I just worry more about her sometimes since unlike my other daughter it isn't obvious GI symptoms. Thank you for reminding me of that though.

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I had a kid that talked to a " Grandpa" in his room sometimes. My Irish Grandma was convinced it was her husband's ghost. My son was happy to talk to a Grandpa ghost so I didn't worry about it. He's 18 and still thinks it might have been a ghost - but it's a happy memory whatever it was.

Do the voices bother her or affect what she does? That would worry me.

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The first time it scared her and I thought she was having one of her nightmares, but it didn't seem to bother her the second time, it just woke her up although she would not go back to sleep. She told me that she does not remember what the voices said to her so maybe it really is nothing then. I'm just really unsure about everything with her and her diet right now since it's not extremely obvious if she has gotten gluten.

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I'm pretty sure I've had undiagnosed celiac disease my whole life. When I was 5 years old, I used to climb down 13 steps in the middle of the night to wake up my parents and tell them that there was a tiger behind my door, or under my bed or in the closet. Good thing I had patient parents.

Have you cut out soy and dairy? Those proteins can be a problem... or corn...legumes...

Gosh, it's been hard enough figuring it out for me. I can't imagine the heartache of trying to work it out for your baby. I hope you work it out and wish you well.

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Thank you. We cut out soy and dairy for my 18 month old, but I am sure that the oldest still gets a little bit of it so I will try completely taking it out for her too. We limit corn quite a bit for the baby too, only using cornstarch to thicken some things so I can take that out too for now and see what happens. I think it is alot easier to figure out what is bothering adults then to figure out what is bothering kids, at least this one can talk to me though.

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Thanks for the mention of "voices". I am new to gluten free with lots of good results. My biggest symptom is double-over gut-wrenching pain. I will check my food diary to see if there is any correlation to what sounds like a radio talk show on at night. I don't have a radio, and definitely turn off the TV unless I am actively watching it. I live by myself rural where someone else's radio would not be a clue.

I am glad to find this forum to check out suspicious foods that don't label possible gluten content or processing contamination. I checked ingredients with my local Mexican restaurant and was delighted to be assured the chips and nachos are corn only. Three days of double over gut wrench suggest otherwise. It could be the tortillas or maybe white chocolate chips on the gluten-free cupcakes. I sure hope its not the tortillas. I can live without the white chocolate chips. I'm waiting for reply from the tortilla company and will write when I have info.

THANKS FOR GOOD ADVICE ALREADY FOUND ON THIS SITE. :))))

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I suspect corn in the 'hearing voices' thing. I heard some voices when I ate grits for breakfast every day in spite of antipsychotic medication I was taking at the time. It could have been other things, but was a strong coincidence.

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That's very interesting since my other daughter who only has GI symptoms has problems with corn.

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Upon thinking about it some more I also realize that I was putting a lot of butter on those grits. Maybe the casein, or the combination.

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I'm new to this forum, and am still in the process of trying to get a celiac disease diagnosis myself, but somewhere in my internet travels for information, I remember reading about hearing voices being a symptom of celiac. I was on so many sites, and so can't remember which one I read it on, so I can't direct you there. I recall that the article didn't go into a lot of detail, but I remember thinking how odd of a symptom it was.

I didn't think of it with regard to myself, but someone who replied to you above talked about "hearing" a radio when none was around, and that made me think that on numerous occasions, I've thought I could hear a radio/voices/singing when I've had the faucet running. It's even made me turn off the water to see if there really was some other noise, but that's never been the case.

Regardless, good luck with finding out what is causing your daughter's problem.

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I've recently read articles linking schizophrenia and celiac, and showing that for some folks being gluten free can alleviate schizophrenia symptoms. I'm not saying she has schizophrenia, just thinking there is likely to be some sort of spectrum of symptoms there.

I had a couple periods in which I had hallucinations that included sound, or were completely auditory. They were linked to manic and hypomanic episodes.

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Other interesting research...I read when I had hyperparathyroidism (which I believe was caused by gluten and possibly corn) that a significant porportion of patients admitted into psych hospitals tested positive for high calcium levels and high PTH levels (indicating hyperparathyroidism).

Oats and quinoa (and derivitaves) hurt me too, but that could just be me.

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    • celiac disease is psychosomatic
      I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.
    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
    • celiac disease is psychosomatic
      Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?
    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.  Book a double appointment as we say in the UK (but that isn't always possible!)  I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by by celiac disease, another medical condition or just being a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
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