• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Hearing Loss And Celiac
1 1

11 posts in this topic

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




... 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:

2

Share this post


Link to post
Share on other sites

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

nope :unsure:

0

Share this post


Link to post
Share on other sites

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! 

0

Share this post


Link to post
Share on other sites




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.

 

 

 

 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
1 1

  • Forum Statistics

    • Total Topics
      107,328
    • Total Posts
      935,514
  • Member Statistics

    • Total Members
      64,989
    • Most Online
      3,093

    Newest Member
    Jaf
    Joined
  • Popular Now

  • Topics

  • Posts

    • First degree relatives of celiacs should be tested every 2 years in the absence of symptoms & immediately if symptoms present since celiac can present at any age. Celiac affects every cell in the body & inflammation is common. My inflammation began in my lower back and the bend of my leg (on the back side of the knees). It progressed to literally everywhere. You name it, back, neck, arms, legs, ankles, hips, wrists, fingers. Excruciating pain as well as swelling. So excruciating that opiates didn't even phase it. I just had to bear it. I would take ice packs & use them until the area was pure D numb. You're never supposed to leave ice on that long but if I hadn't then I would have shot myself. I can not begin to describe the intensity of the pain. The last year before diagnosis, I was sure that within a year, I would be confined to a wheelchair for the remainder of my life. Now, 5.5 years gluten free, I can't tell you the last time I took a Tylenol or any other anti inflammatory. In fact, I'm not on any meds at all. Nothing.
    • Thanks for all that info and the links.  It would be such a relief if I could know what is causing the fever, and that maybe it will go away as I stay gluten-free.  Both my gastro dr and rheum dr said to still stay gluten-free even though I apparently don't have celiac.  They are saying to give it 2-3 months to see how I feel then.  My fever has been down to around 99.9 the past two days, instead of over 100 and 101 like it's been since February.  That is the most exciting thing so far.  My stomach is not as severe or bad, but certainly not great, and I don't feel out of the woods at all concerning that yet.  I still hope to feel a lot better as more time goes by without gluten....I hope.  I seem to get bloat and also discomfort in my ribs more in the evening, even if I ate the same thing at lunch.   I started a food journal.  I guess I need to keep being patient. My rheum dr wants to see the journal in October when I see her again. She said she loves detective work.  It sounds like we all need to become food and symptom detectives when dealing with this.  Now if we could only get an NCIS episode where they investigate how gluten can "murder" our stomachs, and figure out a cure for gluten issues, besides going gluten-free.  It actually hasn't been too bad so far, other than foods that you are iffy or unsure about with all sorts of weird ingredients listed in it.  The internet and this site here helps a lot with some of that.  Luckily there is a whole lot we can still eat, but corn and corn products are an iffy for me too at the moment, and my dr suggested trying to avoid soy, and that xanthan gum, and a few things like that. Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.  Ya, I've been hearing "it seems like something autoimmune" for the past few decades.  It'd kind of be helpful to figure out exactly what.  I'm so tired of being tired.  I am sure you all can relate to that.  You just want to wake up and feel good.  
    • HEB organics does not bother me at all. Their plain one has to be boiled before I can drink it so I tend to use it in moderation in cooking...it also has xantham gum which explained that issue. MALK gives me no issues (Local Only Brand I think). Used to drink something called Mooala but could not find it unsweetened after my UC dia.  Almond Breeze is next up but I can only drink about a cup of it before I start getting burping issues, silk bothers me the least but still causes some issues. Silk cashew is alright and I use it all the time with NO issues at all...but I use it in cooking and do not think I have ever used it without boiling it first either in a icecream base or mixing it in a soup, cheese sauce, or adding a bit to eggs for fluff.   Hmm there is one other brand of macadamia milk that dose not bother me and Good Karma Flax milk I have NO issues with....been a good 6 months since I had any though. http://malkorganics.com/products/   https://www.heb.com/product-detail/h-e-b-organics-unsweet-vanilla-almond-milk/1741526 ^ Two that give me the least issues  
    • Oh goodness me so do you guys bother to get histamine level diagnosed or do you just treat it as you did the food diary ? taking note of high histamine time of year/ season and diet into your seasonal food diet? I'm pretty good at rotating foods I've done that longer than I've known about my issues from a nutritional standpoint I rotated which is why until the gluten challenge derailed my immune system entirely. it was challenging enough to do that gluten challenge I am not really up for more testing. I have symptoms of IC, POTS, fibromyalgia, and now you reveal that yes histamine threshold are part of the celiac autoimmune party bag too. how do all branches of medicine not find this group the most intriguing group of people ever? Really?Or Do you just all avoid them and go on your merry way? Ennis - what almond milk can you drink ? the almond milk 3 we tried/ bought prior to making my own (had unlabeled ingredient  fortified and thickeners corn derived added. ) I was shocked to call and discover it had it in (not labeled as it was corn not top 8) it finally explained why the right elbow joint hurt but it was a small enough derived amount of derived  corn not to trigger the Full blast corn intolerance symptoms. For this reason and now the orange juice incident I'm really leery of unidentified corn or corn derivatives or highly processed any additive for they are prevalent in processed land.  
    • Yeah I have 2 stationary pedal bikes. I use one on the desk sometimes while watching a show and work out my arms. I keep one under the desk and pedal on it for hours a day, really helps with my restless leg issues and stress (just gotta keep moving or I start feeling like a panic attack is coming on trapped by life like a rat in a cage. If you need to know were to find the ground cocoa nibs look up crio bru, they sell it as a coffee replacement for $23 for 1.5lbs they have different origin and different roast levels so you can get different flavored cocoa nibs I get several and mix them up.
  • Upcoming Events