Celiac And Pediatric Hearing Loss - Does It Improve?

[greenbeanie]

My daughter just had her 5-year-old physical, and she failed the hearing test. She had no response at all to even the loudest beeps in either ear. She was being cooperative and really trying and paying attention. The same thing happened at her physical last year, but we were right in the middle of getting her celiac diagnosis at that point, and it was the least of our concerns. She had quite a bit of wax in her ears then (which over-the-counter ear drops have helped reduce) so everyone figured the problem was just from wax. However, she did not have excessive wax this time, and she still didn't hear any of the sounds.

 

She does ask us to repeat things a lot, but her speech is totally fine. She articulates well, loves rhyming, and has a big vocabulary for her age. So she seems to be hearing okay at least some of the time. My own sense is that this is an autoimmune or celiac-related problem. I found some conflicting research about an association between celiac and sensorineural hearing loss in pediatric patients on PubMed, but it sounds like not much is known about it. I can't find anything at all about the prognosis, if this is indeed what's going on. Does anyone have experience with this? Is this type of hearing loss likely to improve once her celiac damage has longer to heal, or is it a permanent sort of thing? 

 

Ironically, her earliest celiac symptoms included neurological problems and sensory issues, including extreme sound sensitivity (definitely not a lack of hearing - the problem was that even tiny sounds made her cry). She was diagnosed with Sensory Processing Disorder as a toddler, but those symptoms went away almost entirely after a few months gluten free.

 

We're seeing an audiologist for a full hearing assessment next week, but I'm not counting on the audiologist to know much about celiac. I'll bring her abstracts from the two articles below and a few others, but I'd love to hear if anyone here has experience with this. 

 

Open Original Shared Link

 

Open Original Shared Link

 

 

Oops, the first link wasn't working. Hopefully it's fixed now.

[beth01]

My daughter is 11 and was just diagnosed with celiac.  She has had chronic ear infections her whole life, two in the last few months.  I had asked about if there was a correlation between the two and was told no. She has also had 4 sets of tubes and is getting her 5th set in a few weeks.

 

Is it possible her ears just aren't draining properly and would benefit from tubes?  My daughter has had extreme hearing loss after her tubes fall out just from all the build up of fluids behind her eardrum.  They can test for that easily and should have been done before a hearing test.

[greenbeanie]

She's never had an ear infection, fluid draining from her ears, or any other ear problems as far as we know. Both the primary care doctor and her allergist said her ears looked completely normal during a physical examination. I'm sure the audiologist will recommend further testing if she thinks infection might be the issue, but my daughter doesn't have any other symptoms of infection or illness (aside from celiac, of course).

[beth01]

Kids can have small/short Eustachian tubes that don't properly drain all the junk.  My daughter only gets ear infections when she gets colds.  Does your daughter get a lot of colds?  There is a test they do where they stick a probe in the ear that blows a little air in and they test the waves in the ear to see if there is a fluid build up. The fluid build up doesn't always lead to infection but leads to hearing loss.  A tube helps drain that fluid since the short Eustachian tube doesn't which then helps with the hearing loss.  My daughter's hearing has been down to 20% in both of her ears without an infection.  Tubes put in and ears retested a month later and she was back to 100% in one ear and 80% in the other which improved over time.

[greenbeanie]

Thanks for the info - I'll ask the audiologist about that specifically. She's only had one significant cold in the past year, which was going around her preschool class. I'd say she's been sick less often than most of her classmates since she's been gluten free. As an infant and toddler she used to gag and vomit frequently, but it was always associated with food and sensory issues (though we couldn't figure out the trigger then). By the time she was an older toddler the vomiting had lessened and she had more tummy aches instead. She's never been particularly prone to colds or sinus-type stuff, though she's been in group daycare or preschool since she was a baby and generally got the major illness that went around in winter. She does have pollen allergies in spring and takes an antihistimine daily, but her allergies are well under control and after a year gluten-free her allergy symptoms have improved to the point where we can skip the antihistimine once in a while. 

[beth01]

Hope you get it figured out and it's an easy fix. Tubes are nothing , a couple of hours at the doctors.

[LauraTX]

Definitely get her into an ENT as well as the audiologist.  There IS such a thing as autoimmune hearing loss, you can ask for her to be tested for the antibodies since she already has a history of autoimmune problems.

 

Here is a good page on it:   Open Original Shared Link

 

When I was a teenager, one of the many symptoms of my autoimmune problems (I have celiac and lupus) was unexplained sensorineural hearing loss.  I went to more than one specialist for it, and almost was to the point of needing a hearing aid.  When my lupus diagnosis came up, I mentioned the unexplained hearing loss to my rheumatologist, and soon after I found out that my Anti Collagen type 2 antibodies were sky high.  They have decreased with my lupus treatment (Celiac and lupus were dx around the same time so I can't exactly attribute things to just one disease easily) and a few months ago, I had my hearing tested again and it has IMPROVED.  I went from "Well, maybe there is a deaf person in your family, you should be prepared for this to become more severe and a significant disability" to normal hearing for a person my age.

 

When I asked my ENT specialist why he hadn't tested me for autoimmune hearing loss, even when he was at a complete loss as to what was causing my hearing problems, he said autoimmune hearing loss is so rare it isn't even in the scope of what they are looking at.  So push to get everything thoroughly checked out for your daughter.

[greenbeanie]

Thank you, LauraTX! I'll bring this info to the audiologist and ask to see an ENT too. My daughter's tTG went way down from 65 to 5 in the nine months after diagnosis (with 4+ as positive), but it's still above normal so maybe this will improve some on its own with more time.

If additional things keep popping up and her local doctors can't find an explanation, I think we'll try to see someone at Boston Children's Hospital. I've heard that they're really great at coordinating different services and evaluations so that all the different providers are talking to each other. It took four years just to find someone to take her other problems seriously, and two doctor-switches until I found someone who would even agree to test her for celiac (once I'd figured out through my own research that she probably had it), and I don't want anything else to fall through the cracks.

[NatureChick]

I can't speak for children or your daughter's issues specifically, but gluten definitely affected my hearing.

An ear ache was one of my more painful symptoms and still arises when I get glutened.

When I went gluten-free, my hearing improved within days but I had a phantom ringing noise in my left ear for the first two months before it finally faded. Though I only had noticeable symptoms in the left ear, the hearing in both seemed to be affected. If my hearing could be considered 100% now that I'm gluten free, I'd guess that it was at 70% before.

Autoimmune reactions can cause excess wax production as well. 

If clogged eustachian tubes seems to be one of the problems, I'd look into a device that is supposed to help break up the clogs using vibration before going the route of having tubes put in the ears.

[SMRI]

I have unexplained hearing loss and was recently diagnosed with Celiac.  At the time of my hearing loss many, many years ago,  there was no real answer as to why but now it is assumed it is autoimmune related with more autoimmune issues popping up in my family.  I don't know if they will officially test me for that or not now, not sure it matters after all these years.  If she really is not hearing anything on the beep tests, an ENT/Audiologist is certainly the next step.  Sometimes children that age do hear the beeps but don't always know that is what they are supposed to be responding to so it appears they do not hear anything.  A pediatric ENT/audi can help test her in a way that makes sense for her.  Tubes are not going to help if she doesn't have any fluid or infections but if her hearing loss is really that bad, she should get hearing aids.

[greenbeanie]

We actually did get something of an answer: Her ears are structurally fine (bone conduction good, etc.), and she tested within normal range for the hearing tests when in a closed sound-proof booth. She seems to have a sound-processing issue rather than an actual hearing issue. I hadn't realized it until the audiologist started asking very specific questions about where we are when my daughter asks us to repeat things a lot, but it's almost always in the kitchen when the microwave or dishwasher is running, in the car, in a bedroom with an air conditioner or fan on, etc. These are really quite quiet background sounds, but apparently she is not able to separate speech sounds from background sounds very well. During the hearing tests in the doctor's office I don't remember any noticeable background noises at all, but then again I probably wouldn't have noticed them because most people just tune out soft distant sounds and focus on the louder ones nearby. Apparently that's what she's not able to do properly.

Anyhow, this was somewhat of a relief. Although her prior sensory symptoms almost entirely resolved after she started a gluten-free diet, there's probably some brain readjustment still going on with regards to sounds. The audiologist was optimistic that she might just outgrow it. Sounds like there's additional testing and possibly treatment they could try if the problem persists for a few more years, but she said those tests can't be done until around age 8 (I'm not sure why).

Separately, we also got her most recent tTG follow-up tests back, and it hadn't dropped at all in the past three months. She was diagnosed a year ago and her tTG was just under 2x normal in March (way down from over 16x normal at diagnosis), so the lack of decline this time was unexpected. However, we suspected that she'd been reacting to small amounts of airborne gluten, and the tTG results support that suspicion. While not good on the healing front, it is good in terms of the hearing. The glutening probably just caused a resurgence of her prior sensory problems, and the hearing test at her primary care doctor's just happened to be right in the middle of that time. It already seems quite a bit better - probably due to the combined effect of getting over the glutening, regular growth, and the fact that we're now more careful to talk to her away from humming appliances.