Ear Problems Associated With Celiac

[twinsmom]

I had the flu a month ago and got an ear infection. My ENT put me on an antibiotic and the infection went away - but the fluid did not. So they did a myrinotomy (put a hole in my ear drum) to make the fluid go away. The fluid went away but I still can't hear well. I can hear myself breath and talk - like a finger is in my ear - and have pressure in my ear and I am terribly uncomfortable - a month later. I read something about Auto Immune Ear Disease (AIED) and or Meniere's Disease which can be associated with or brought on by celiac.

Has anyone had problems with their ears like this?? Or know anything about the diseases above - or have any suggestions on how to fix it!!!

[RiceGuy]

I wouldn't be surprised if the hole in the ear drum didn't heal up. Apparently that can happen from what I've read. But I bet your doctor didn't recommend garlic. I did a Google for ear infections and Garlic is suggested all over the place as a cure.

Here's something to check:

http://www.myhomeremedies.com/topic.cgi?topicid=74

That's all I can offer, as I've never had such a thing, nor looked it up until now.

I hope you get it solved soon!

[VioletBlue]

I've had ear problems most of my life. Once I went gluten free the stuffiness and pressure in my ears started to clear up. It only returns now if I get accidentally glutened. I don't know that Meniere's Disease is associated with Celiacs, but I do know that some of the symptoms of Celiacs can mimic Meniere's. Meniere's was a tentative diagnosis for me many years ago when I was having frequent dizzy spells and positional dizziness. But the dizzy spells are pretty much gone these days along with most of the ear problems. It has unfortunately left me with some significant hearing loss in one ear and persistent ringing that never really leaves me. That was most likely the result of repeated ear infections over the years; at least that is the medical geniuses best guess.

I had the flu a month ago and got an ear infection. My ENT put me on an antibiotic and the infection went away - but the fluid did not. So they did a myrinotomy (put a hole in my ear drum) to make the fluid go away. The fluid went away but I still can't hear well. I can hear myself breath and talk - like a finger is in my ear - and have pressure in my ear and I am terribly uncomfortable - a month later. I read something about Auto Immune Ear Disease (AIED) and or Meniere's Disease which can be associated with or brought on by celiac.

Has anyone had problems with their ears like this?? Or know anything about the diseases above - or have any suggestions on how to fix it!!!

[Joni63]

I had the flu a month ago and got an ear infection. My ENT put me on an antibiotic and the infection went away - but the fluid did not. So they did a myrinotomy (put a hole in my ear drum) to make the fluid go away. The fluid went away but I still can't hear well. I can hear myself breath and talk - like a finger is in my ear - and have pressure in my ear and I am terribly uncomfortable - a month later. I read something about Auto Immune Ear Disease (AIED) and or Meniere's Disease which can be associated with or brought on by celiac.

Has anyone had problems with their ears like this?? Or know anything about the diseases above - or have any suggestions on how to fix it!!!

I'm in the middle of trying to get my ear problems figured out now. Mine started ringing in December and have not quit. (I was just dx'd Celiac in August) I ended up with an ear infection about a month ago and was put on antibiotics. Like you, my infection has cleared but the fluid and pressure is still there. I'm visiting an ENT on Monday to see if they can figure out what's going on.

I've read that clogged eustacian tubes can cause fluid in the ears. It surprises me that I'm having this problem now since my nose has been stuffed up all my life and has been so much clearer since going gluten free. It makes no sense to me.

I'll let you know what happens after my appointment monday.

[flourgirl]

Hi. I can so relate. I've had ear problems from infancy well into my late 30's. It was normal for me to have 2 or 3 ear infections each year, it often took several courses of antibiotics to clear them up each time. My eustation tube would collapse and fluid would build up inside. I've had tubes, holes punched into the drum, you name it. Did they have you flushing your outer ear when they punched the hole in.....to help drain and to prevent further infection? Seems like in this day and age they would have gotten away from such barbaric practises and found something more effective than that! My Dr.s used to tell me that I would outgrow the allergies, the constant infections before I reached adulthood. Guess adulthood meant 40something, huh? I am positive that most of those health issues were Celiac related....but none of us had ever heard of such a thing back then. I have really bad hearing now, and constant ringing and "white noise" inside my head from it. Dizzyness has always been a problem, I assume that the inner ear sustained some damage as well.

Hopefully your hearing will come back as your eardrum heals and you get no further residual affect from it. If you get no satisfaction from your ENT specialist...perhaps you need to see someone else. Your hearing is important, please do all you can to protect it. It may be that you only need time for healing.....but a second opinion wouldn't hurt if it's still being a problem.

[twinsmom]

Belly Fat

Thanks -

I forgot to add that I am on the steroids (since this past tuesday - he doesn't know what is wrong - but he said steroids may help??) Maybe he is thinking something is inflammed in there - so far it isn't working!!!

I was also just diagnosed as Celiac 2 months ago and have been gluten free since then. I have never had ear problems!!!

I go to the ENT again on tuesday and will suggest the clogged eustasian tube possibility. I have heard alot of talk about getting a cat scan to diagnose things for the ears - you may want to suggest that too - I am.

I will let you know what happens with my ENT appointment too. It is driving me nuts!!!!!

[twinsmom]

Flour Girl -

Thanks. I am reading alot so I can suggest things to my ENT - who actually will listen. But I live in MD and have made an appointment with an ENT at John's Hopkins for a second opinion - but can't get in until June!!! I am hoping they have a cancellation before then.

I wake up every morning hoping I can hear well again...no luck so far. It has been only 27 days since this started - I am trying to be proactive because I couldn't imagine losing my hearing for lack of action! I think you may be right though that some of this will just take time to heal....but in the mean time I want to make sure!!!!! Patience is a virtue... :)

[Joni63]

Did they have you flushing your outer ear when they punched the hole in.....to help drain and to prevent further infection? Seems like in this day and age they would have gotten away from such barbaric practises and found something more effective than that!

flourgirl, Is it common practice to have a hole put in your eardrum for drainage. Is that what you are saying is barberic or the flushing out of the ear? I'm not sure I would want anyone to purposely puncture my eardrum without trying many, many other options first. It sounds dangerous, but for all I know it could be everyday common practice.

Belly Fat

Thanks -

I forgot to add that I am on the steroids (since this past tuesday - he doesn't know what is wrong - but he said steroids may help??) Maybe he is thinking something is inflammed in there - so far it isn't working!!!

I was also just diagnosed as Celiac 2 months ago and have been gluten free since then. I have never had ear problems!!!

I go to the ENT again on tuesday and will suggest the clogged eustasian tube possibility. I have heard alot of talk about getting a cat scan to diagnose things for the ears - you may want to suggest that too - I am.

I will let you know what happens with my ENT appointment too. It is driving me nuts!!!!!

I really think you may need further testing. Maybe the steroids will shrink swelling, if that is what is causing your problem. I hope you get relief soon. Let me know how you make out tuesday.

I've only had one other ear infection in my life and it was in the same ear as I'm having most of my problems now.

I know how it must be driving you nuts. I feel the same way at times. Sometimes the ringing will get louder during the day and it makes me stop for a minute to get my bearing on where the sound is coming from. It's very strange when I realize it's just in my head and no one else can hear it.

Good luck to you. I'm having 2 Redbridges tonight to see if that will help. Not a solution, but I just feel like a couple beers.

[flourgirl]

I'm wondering if the steroids could actually be causing some of the ringing or other problems. I had taken them only once and found out the hard way that I'm allergic and react very badly. (I'm hoping that I never come to a point where steroids become the only option ). Anyway.....It was the puncturing of the ears that I consider barbaric. I remember being small enough to have to lift my arms to hold onto the chair arms, tip my head and "hold still" while the ENT did the punctures. I can still hear that sound! I used to have to rinse out my ears with some solution, don't remember what it was.

I understand that sounds could come from nerve damage, or blood pressure problems. There are so many possible causes that sometimes our Dr.s just give us the old medical shrug. In reading here, I see that many of us deal with the inner noises, balance disturbances, inflamations that could strike anywhere in our bodies. Hopefully for all of us the gluten-free diet (and for so many, "other foods free), will address and clear up some of these issues. Hang in there, and please let us know how you make out with your ENTs, and with healing progress. I would be greatly interested in knowing.

[twinsmom]

I just ordered a case of RedBridge!!!

Since I am a new Celiacer I am just discovering the good gluten-free salad dressing, pizzas, breads and now beer as I go!

I will let you know what happens with my ENT on tuesday! Thanks, twinsmom

[Mom23boys]

I choose less invasive practices first. When my ear starts building fluid I go to a soft touch chiropractor (activator style). I've actually had to grab a tissue a couple times during an adjustment because he got my ear to really draining. It was gross but OH it felt so good to have that relief.

[Joni63]

I choose less invasive practices first. When my ear starts building fluid I go to a soft touch chiropractor (activator style). I've actually had to grab a tissue a couple times during an adjustment because he got my ear to really draining. It was gross but OH it felt so good to have that relief.

Can you explain what the Choropractor does to get the fluid draining? I'm very interested in alternative methods. I've considered candling...any opinions if that would help ear fluid?

Thanks!

[Mom23boys]

Can you explain what the Choropractor does to get the fluid draining? I'm very interested in alternative methods. I've considered candling...any opinions if that would help ear fluid?

There are a couple points under the ear that the chiropractor works with and relaxes. (I don't know what these points are called but they are usually sore when your ear is at that point). It doesn't hurt, it is almost like a massage. Then these muscles relax and the bone moves back into place it opens up the areas around the ear. It is almost instant relief.

[Joni63]

Thank you for the info about the Chropractor. I will keep that in mind if I get no relief from the ENT.

Had my visit today. They did a complete hearing test and everything looks and works normally. The ENT looked baffled and is sending me for an MRI of my head. He said he was looking for damage to the 8th nerve? I'm pretty nervous about the scan and what they will find. I'm waiting for them to call me back for the referral before I make an appointment.

[twinsmom]

I had my visit to the ENT and he said everything is working normal and my hearing has returned - but I still hear myself breath and when I talk it is like I am in a barrel. He doesn't want to see me for a month and hopes that the Eustachian Tube will heal by itself and go back to normal.

My doctor didn't diagnos the follwoign - he is avoiding it since he is so busy...But of what I have read on the web - it looks like I have a Patulous Eustachian Tube PET - open all the time. It can happen when you lose only 5-10 lbs in weight (I lost 10 while getting the celiac diagnosed) and apparently 1/3 of the PET patients have an autoimmune disease! Sometimes if you gain weight back it goes away - but otherwise it has to be dealt with with nose drops and sometime surgery!!!

I am going to get a second opinion tomorrow...

[flourgirl]

Hi twinsmom! Be sure to let us know how you make out. I guess I'm curious about any new information/technology that is out there in the ear, nose, throat areas. I hope you find some answers and get better soon.

[Joni63]

I had my visit to the ENT and he said everything is working normal and my hearing has returned - but I still hear myself breath and when I talk it is like I am in a barrel. He doesn't want to see me for a month and hopes that the Eustachian Tube will heal by itself and go back to normal.

My doctor didn't diagnos the follwoign - he is avoiding it since he is so busy...But of what I have read on the web - it looks like I have a Patulous Eustachian Tube PET - open all the time. It can happen when you lose only 5-10 lbs in weight (I lost 10 while getting the celiac diagnosed) and apparently 1/3 of the PET patients have an autoimmune disease! Sometimes if you gain weight back it goes away - but otherwise it has to be dealt with with nose drops and sometime surgery!!!

I am going to get a second opinion tomorrow...

Hi twinsmom,

That is great you found some information that could be your answer. I hope your 2nd opinion goes well and you get some relief! I think not knowing what's wrong is worse than having the answer.

It's great news that your hearing has returned to normal. Maybe your ENT is right and it will heal by itself and you won't need further intervention.

twinsmom, did they ever suggest an MRI for you? It just seems as though they would be able to see what's going on with your eustacian tubes that way.

Keep us posted about your appointment tomorrow.

I went for bloodwork today for the MRI and my PC is in the same building so I popped in to check the results of bloodwork I had done last week for thyroid and different vitamins. Turns out they need to see me so something must be whacked out. I'm kind of glad, but a little nervous.

I'm wondering if thryroid problems or vitamins deficiencies can cause ringing in the ears. I think I've read that both can, but I need to go digging around some more to find out for sure.

Maybe I should just put off the MRI with gladolinium until I get treated for whatever is wrong from the vitamin/thyroid tests. My appointment is this Monday.

[Judyin Philly]

Maybe I should just put off the MRI with gladolinium until I get treated for whatever is wrong from the vitamin/thyroid tests. My appointment is this Monday.

i have been having these ear problems for 3 weeks.

i had alot more trouble after i had the MRI with gladolinium dye.

There is a thread running on it now.

you might want to take a look at that thread.

Judy

[Beagle]

Hi Everyone,

I also have/had ear problems for many years. I went to see my ENT late last year & the infection that time was viral, so he gave me this cream to put on/in my ear. The weird thing is that when I eat soy or dairy or eggs, or cross-contamination with gluten from my kitchen, the reaction I get is in my ear, always my left ear. I don't get an infection in my inner ear, but I get this thick fluid in the upper part of my ear. It can last anywhere from 1 to 5 days, on the average. So, when this happens I use the cream he gave me and that helps until whatever I ate makes its way out of my system.

I never attributed my other ear infections to celiac, until I started paying more attention after my last visit with my ENT.

Good luck with your testing twinsmom, I hope they find a solution for you.

BTW, how is the RedBridge? My husband said he'd switch to it and I would greatly appreciate your comments on it.

[Judyin Philly]

I went for bloodwork today for the MRI and my PC is in the same building so I popped in to check the results of bloodwork I had done last week for thyroid and different vitamins. Turns out they need to see me so something must be whacked out. I'm kind of glad, but a little nervous.

. My appointment is this Monday.

Joni

so anxious to hear about what the blood work showed? I know that before my MRI with gad certain tests..think to see about kidneys had to be ok. Was that it?

Was just cking on you to see how you were and of course all the rest of you.

I just returned from the ENT apt. The Dr. was so knowledgeable and NICE TO BOOT. surprised and thrilled.

he told me just what my chiro had..................wax build up and fluid behind the ear drum. This has been going on for almost a month and getting worse using the steroid drops. Maybe i'm allergic too. who knows.

told him the Dr on the 29th didn't see any wax at all just swimmers ear. Well he said "as chrio told me"

that the drops could casue wax build up and possibly fluid behind the ears and that the other Dr might not have seen anything then and the wax could have now built up.

so he took this instrument and sucked out wax. I could hear it 'clunk' out. After it was all out he said there was fluid and so got it out somehow.......?

After about and hr he said i should be good as new. He was right.

Let's hear it for a good dr apt for a change.

It seems the brain fog has lifted too..........amazing.

OH..............guess what he recomends for allergies............the neti pot.

i can post a link on how to use if anyone wants it.

There has been alot of talk on the forum about how great they work.

I'm going to get one this after noon afternoon. Think I saw at cvs the other day

Joni......hope to hear from you and that your ok.

Judy

[jerseyangel]

Judy--

Great news! So glad that he was able to take care of it for you right then and there

I go tomorrow to my new GP, and plan to ask about the wooshing in my right ear. I used to have problems with wax build-up years ago and would have to go and get it flushed out once in a while. I remember that doctor saying it was too bad there wasn't a good use for all the wax I produced

Anyway, so happy to hear the good report--I was wondering how you did.

[Joni63]

Joni

so anxious to hear about what the blood work showed? I know that before my MRI with gad certain tests..think to see about kidneys had to be ok. Was that it?

Judy

Judy! So glad your new ENT is very good! Unbelievable that the other Doctors couldn't figure out it was ear wax causing your problems. Stick with his guy - he sounds awesome.

My mom recently bought me a Sinus Rinse bottle caused NeilMed from Walmart. It's supposed to be as good or better than the Neti Pot. I haven't tried it yet, but plan on it soon.

The bloodwork for kidneys was fine. It was my vitamins that are off. I'm very low in ferritin (7) and vitamin D. My Dr. is good at taking the tests that I ask for, but not really good with vitamins because she told me to take a multi and she'll re-test me in a month. I'm trying to supplement somewhere between a normal dose and a dose for anemea. I bought some liquid D, (Carlsons) and liquid iron (Florivital) and I can tell you I will NOT buy liquid anything ever again, lol!

I also cancelled the MRI for now. I called the office and told them I wanted to try the vitamins for a while to see if that makes a difference with my tinnitus before I do the MRI. They said it was fine and my bloodwork for kidneys would be good for 6 months.

I really believe the vitamins are causing the tinnitus, especially the D which I think started to decline since August because I stopped drinking milk. December was when I noticed it and that's when the sun is hard to get enough of.

Oh, and the fluid in my ear is gone! The ENT never mentioned it, but I figured it was still there. But when I went to my PC she said there is no fluid in either ear. And it does feel much better!

Glad to hear all went well with you Judy.

[Joni63]

twinsmom,

How did you 2nd opinion go?

[twinsmom]

I am going to an otologist (sp?) for the PETD now - so I have not resolved the earproblem, I wish ithad been as simple as wax build-up. FYI - the Red Brige is ok - laittle bitter for my taste - but beggers can't be cj\hoosers - it is worth a try!

I have an appointment with a specialist this week, I'll keep you posted. Twinsmom.

[Judyin Philly]

Judy! So glad your new ENT is very good!

My mom recently bought me a Sinus Rinse bottle caused NeilMed from Walmart. It's supposed to be as good or better than the Neti Pot. I haven't tried it yet, but plan on it soon.

Thanks Joni

I got what you told me to and haven't tried it yet

Just want to see if i can keep things under conrol naturally for awhile

i did go back to my claritin I'd gotten off of due to casein but can't stand the seasonal allergies now

Please keep us posted on your apt this week

Judy