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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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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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