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Hearing Loss And Celiac
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Anyone know if hearing loss is related to celiac? I have celiac disease, and hearing loss that began in my early 20s. First they told me it was noise induced and then they said it could be genetic. (I don't think anyone knows for sure.) But I just found out my 5 year old son has some hearing impairment. I'm devastated. I don't know if he has celiac or not. Should I get him tested based on the hearing loss? His doctor said they don't usually test kids until they're about 7, unless they are showing symptoms.

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As to whether you should get your son tested, yes, absolutely. That is because you have it, and

it is genetic- very straightforward. All your blood relatives should be tested, in fact, and I have

never heard any doctor say there is a certain age to wait for. But then, doctors can sometimes

say some very interesting things..... All I know, celiac can be active from birth, therefore, since he

is your son, your doctor should have told you to have him tested as soon as you tested positive,

as it can become active at any time, whether or not he has symptoms.

As to the hearing loss question, I have absolutely no knowledge regarding Celiac and hearing loss,

so perhaps someone else will chime in.

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Both my daughter and I had significant hearing loss. Mine was in my left ear only and started/was noticed at 6 or 7 - slowly but steadily worsened over the years, had surgery to replace a genetically missing inner ear bone that did not repair my problem - was about 75% deaf in my left ear at the time of celiac diagnosis - I could hear sounds, but could not understand language, etc with that ear. At about a year and a half gluten-free suddenly my hearing improved quite a bit. I only have very minor hearing loss in that ear now.

My daughter has significant hearing loss in both ears - she also had significant improvement in one ear since removing gluten. Her other ear remains deaf.

I cannot say your son's hearing will improve, but I do agree that you should not wait to have him tested. If you have Celiac Disease your children should be tested every three to five years regardless of symptoms and more frequently if symptoms arise. I suggest a full celiac panel along with nutrient testing as malabsorption is often the first measurable indicator of Celiac Disease.

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I don't know if it's applicable, but I'm certain my hearing improved once 100% gluten-free as an adult - it had been a slow decline.

The age 7 biz is nonsense, imho.

When I've seen age-related limitations, it's more like questioning how many months old is ok for an endoscopy - far different scale.

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Wow I'm surprised to hear people saying their hearing has improved. My audiologist basically said once it's gone, it's gone, and the damage is done and only gets worse. (Which it has.) Hmmm.... I guess I need to look into this further.

I don't know why they don't want to give my kids the celiac blood test. It's kind of pissing me off at this point.

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I'm 40+ yrs undiagnosed and have experienced hearing problems along with bad brain fog. I'm strict gluten free about 2 yrs and have slowly been getting better. No hearing problems now.

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My neighbor has a daughter that overcame ear problems after going gluten free. She had 3 ear surgeries to no avail. When she went gluten free she confounded the ear doctors. I don't have any guarantees, but it worked for my neighbor.

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... When she went gluten free she confounded the ear doctors.

...

I may never stop being amazed at how often situations of this nature occur. Some Drs even seem to flat out refuse to believe that the gluten-free correlation really is causation.

As long as those particular confounded ear Drs ended up accepting that gluten was the issue, it's hard to really blame them - being products of a system of specialized education. Sheesh even some who DID specialize in GI aren't up-to-speed w/ the totality of what body parts/areas/systems can be affected by celiac.

I don't think any of the body's systems get off scot-free for all celiacs, do they? :unsure:

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I don't think any of the body's systems get off scot-free for all celiacs, do they? :unsure:

nope :unsure:

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I definitely noticed an improvement in my hearing after going gluten free.

I would even say that ear aches were one of my earliest noticeable symptoms back in my early 20s. Repeated visits to various ear, nose, and throat specialists resulted in them telling me that there was nothing wrong with me and that I simply had wax build up in my ears (though clearing it out never helped ease the pain).

When I went gluten free, I noticed within two days that my hearing had improved by 10-20% and may have improved another 10% in the next few months. The first time after going gluten-free that a good song came on my car radio, I cranked it up to full volume as I normally would ... and had to quickly turn it back down again because it was just way too loud. 

For a month or two after going gluten free, I would occasionally hear a phantom noise, like a distant horn blowing, but that eventually went away as my ears healed, or perhaps as I got better at avoiding accidental glutenings. 

The only explanation I can figure from what I read online is that it is just like any other allergic histamine response - affecting the ears along with the sinuses. And overproducing wax is part of that as well as having some sort of swelling though I don't know enough about ears/hearing to know what all of the standard allergic symptoms may be nor how much hearing damage could result from them.

Now I just suffer from being annoyed by all of the background noise that I couldn't hear before. So many hums from heating, plumbing, and refrigeration! 

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I have only been gluten-free for 2 months. I don't know if it is hearing loss or just that I am talking louder.  I have been asked twice to quiet down when speaking, in the last 2 weeks; I have become very aware of how loud I am talking, before people always said they couldn't hear me.  I see the doc tomorrow and was going to address it with her.   I sure hope it clears!

 
Great topic! Thanks!

 

Both my father's child and I have celiac disease, but our child does not.  He was told it could skip a generation.  My child said, "docs will not do the testing unless the child has symptoms", pretty lame I think.  I think if it runs in the family, get them tested every 5 yrs.  Sometimes tests are very wrong.  

What I have found is most docs don't have a clue.  I am 55 and barely alive.  The longer it goes untreated, the more damage is done.  At least how I understand it.  

Push for the test;  I am sure I have had this from the time I was born by how my mother described me, i have a few autistic traits.  I didn't get diagnosed till I had lost 35 + pounds and had such bad malnutrition that i was having muscle spasms that looked like a grand mal seizures.  

It is better to be on the safe side with this painful and very misunderstood disease.  Do whatever it takes to get them tested.  I'd hate to see anyone feel like I do.

 

 

 

 

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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/ gene testing?  Some 30% of the poulation carries the celiac genes.  It just tells you that you have the chance to develop celiac disease.  It can not diagnose you.    
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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