Ear Problems Associated With Celiac

[twinsmom]

Postponed until this wed am!!! I will let you know how it goes, thanks for asking!

[Joni63]

What is a PETD?

[twinmom]

[PETD is Patulous Eustachian Tube Disfunction - stays open all the time instead of opening and closing when needed. It is a major pain!

[Joni63]

[PETD is Patulous Eustachian Tube Disfunction - stays open all the time instead of opening and closing when needed. It is a major pain!

Did you have your specialist visit yet twinsmom? Wondering how you made out?

[JulesH]

I'm wondering if my sister's ear problems can be blamed on Celiac. She had a positive blood test but is in denial and has the support of her GP to stay in denial, so she refuses to go gluten free. But for the past two or three years she's had pretty bad ear problems. Apparently, her ears are always filled with fluid and she gets frequent ear infections (her constant use of Q-Tips, due to all the fluid and build up, adds to the problem). She hasn't been extremely proactive, and mostly just treats it with antibiotics when she gets an infection, but she has been to two ENTs who basically dismissed her. (One told her it's due to her oily skin!)

But does this sound like it could be a gluten issue?

[flourgirl]

Hi JulesH! I have had problems with ear infections all of my life. I had my tonsils out at the age of 2 in an attempt to stop all of the infections (they used to believe that somehow the tonsils caused this, as at the time they didn't understand the function of them), as well as chronic kidney infection. I've done the whole deal with tubes in the eardrums (several times), and had major surgery because the mastoid bone behind my right ear was rotten from so many infections. Finally, at about the age of 40, the incidence of infection slowed down! I was told as a child that they were allergy related....and that I would outgrow them in my teens. Didn't happen. As a result, my hearing is not great.

I firmly believe that all of that is Celiac related. I look back and see many incidences of illness....migraines, ulcers, stomache pains, many times with intestinal problems, bone and joint pain, inflammation of tendons, balance issues....I could go on. If only somebody had known about Celiac back then I could have avoided a lifetime of problems. Anyway...to finally answer your question....her ear problems COULD be Celiac related. She has nothing to lose by going gluten free, and so very much to gain as she has tested positive. Maybe if you gathered some info. on all of the related issues (including possible cancer) that could be avoided, or in denial she takes a chance of having to deal with, you could convince her. BUT, I know with my own family all you can do is share the information, urge the testing and hope for the best. I know that my mom is Celiac, but she refuses to test and doesn't want to change her lifestyle (even if it means she could feel SOOOOO much better ). I have 7 siblings, 1 son, and many neices and nephews....1 niece has the condition, 1 sister got a blood test, the rest just don't want to bother. Several show symptoms that could be related....but none want to admit it. Anyway....what I'm taking so long to say is all you can do is urge, stand by and care, you can't force the issue. Hopefully sis will come around and take charge of her health.

Good luck to you.

[twinsmom]

I went to a U of MD ENT and they diagnosed me with PETD and now I am going to an ENT at U of MD that only does ears to see what we can do about it...I am not sure it is celaic related though. But either way it si a pain! A long process.

[MDRB]

It so interesting that so many of us have had ear problems.

I actually have scars on my ear drums from having so many ear infections. They started when I was around 2, as soon as one would clear up another one would start.

I have had ringing in my ears since I was sixteen.

I have not had an ear infection since going gluten lite around 8 months ago, but since going gluten free I have had that blocked feeling like cotton wool in my ears and the ringing seems to have gotten louder.

I'm not really sure what is going on with my poor ears. lol

[Di-gfree]

I have ear problems, too. My eardrums have been broken (not purposely, though) several times, and I have scarring, as well. I developed tinnitus (constant ringing) about 15 years ago. Plus, I have otosclerosis, a disease which causes deafness. I probably only have about 40% hearing? Not sure. I wear a hearing aid in one ear; can't wear it in the other because of ear drum pain, though.

When my eardrum does get really sore, I put a hot water bottle on my ear, and it helps ease the pain (put a towel between your face and the hot water bottle, though, so you don't burn yourself). It must be so frustrating to (chronically) not be able to get your ear to drain. (That's one of the reasons my ear drum broke one time, because of the pressure.)

[TheMinsterman]

Just had to reply to this post.

My problems started in February with spinning vertigo and fluid in my ear, which is still here. www.dizzytimes.com is a fantastic forum for those of you who suffer from vestibular related issues, very helpful and I highly recommend that site if your looking for advice in this area, the sufferers on there have disorders ranging from Menieres to Benign Positional Vertigo, MAV to Perilymph Fistula. Its been a god send for me.

Everyone with fluid related ear issues, look into Perilymph fistula, this is a leak in the inner ear, it can also cause CSf leak which can cause alot of similar symptoms to Celiacs, neurologicall speaking and may be worth looking at if gluten free diets haven't helped.

[Calicoe]

Yes, I've had clogged ears for half of my life, especially on the right side. The weird thing is that lately I've been getting a sharp yet dull ache in my right ear, very similar to the sharp tinge I've been getting in my foot under my arch and my hand on the inside under my right thumb.

[dollamasgetceliac?]

I have had a stuffy ear for about 6 years now . It all started with one ear infection then I had 3 more all in the same ear ( I feel numbness in half my face on the same side). My Neurologist said it was TMG the Dentist sent me to the ENT he said that it is not TMG . Then back to the ENT, Then the Neurologist then My Regular Doc sent me to a new Neurologist and he did an MRI with out the Dye all is normal. Back to the Neurologist? I guess? who should I go to? I think the gluten-free diet helps but I can not say for sure? I heard that deafness is worse than blindness and honestly I wish I never get either or, although I do feel that I am having ( a swimmers ear) I hardly ever swim Why can't the Doctor figure this out I am very worried about this. I am getting the run around. It just feels like there is a lot of wax in there, the ENT said no.

[dollamasgetceliac?]

I would like to add that this seems like a very strange coincidance, Celiac and ear problems.

[dollamasgetceliac?]

I wonder if there is swelling sometimes and that is pushing on a nerve that is causing the tingeling at the one side of my face?

[ShayFL]

Ive been in and out of ENT's offices. Fluid in the ear. Fluid not responding properly. Possible Minniers. Tinnitis. Weird pressure sensations. Conincidence?

[brendygirl]

I get vertigo really bad every two years or so. I have ringing in my ears every day or so.

My regular doctor said she saw fluid in there, so she sent me to a specialist. He said there was no fluid, that my first doc was probably confused since my ears do not shine (healthy ears without fluid shine inside) because I had tubes when I was a kid. My hearing tested perfectly.

He told me I have TMJ-which is your jaw muscle being tight and inflamed-and to stop being stressed out. He said it's from having a type-A personality and working too much. He put me on steroids and a soft-food diet of pudding and smoothies and stuff for a few weeks. It helped in that my ears don't physically hurt anymore.

I still have the ringing.

[dollamasgetceliac?]

I just noticed it is pinned under Lyme Thread as one of the symptoms

[Judyin Philly]

I just noticed it is pinned under Lyme Thread as one of the symptoms

just went and looked on the 'lyme' thread and didn't see it.

what # was the post?

Was it farther back than the last page?

Judy

[dollamasgetceliac?]

just went and looked on the 'lyme' thread and didn't see it.

what # was the post?

Was it farther back than the last page?

Judy

I am trying to find the lyme thread it was 3/4 down the list I will keep looking, if you find it then please let me know.

[dollamasgetceliac?]

I OUND IT IT IS # 20.

[CarlaB]

just went and looked on the 'lyme' thread and didn't see it.

what # was the post?

Was it farther back than the last page?

Judy

The symptom list is the second post on the first page.

[dollamasgetceliac?]

I FOUND IT It is # 20.

Best Wishes

My Doctor ( Neurologist said that My Nubbness in half my face is not STROKE related and it is not related to the Stuffy Ear and that he only has one other patient with the numbness in half face and it unexplainable, and that Celiac has a lot of STUFF!

[CarlaB]

I FOUND IT It is # 20.

Best Wishes

My Doctor ( Neurologist said that My Nubbness in half my face is not STROKE related and it is not related to the Stuffy Ear and that he only has one other patient with the numbness in half face and it unexplainable, and that Celiac has a lot of STUFF!

I have not read this whole thread, but numbness in half the face is a classic Lyme symptom.

[UnhappyCoeliac]

another one for the have coeliac and developed mmeniere's disease crew.

I am going to go gluten free and salt free then reintroduce salt and see what happens to my ear.

[UnhappyCoeliac]

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.

What is the technical name for this I need to ask for it? The doctors are so poor in Australia though they probably wouldnt have a clue.

I am having exactly the same issues and unfortunately made a new thread:

a few posts about it all fairly inconclusive. I have been diagnosed with Meniere's disease hearing loss, tinnitus and vertigo attacks. For the last year I have been ignoring the fact I am Coeliac and not been following my diet. I am now two days into getting back on track.

Is it possible or probable that the anti bodies from Coeliac could be causing my hearing loss in my left ear. At one stage I went on a detox of liquids for two weeks and my hearing improved albeit slightly. I am unsure if it was because my diet was low in salt (which is related to Meniere's disease) or it was the fact I was also gluten free.

My hearing tests show a moderate loss in one ear and the graph follows a 'typical meniere's' diagnosis:

Posted Image Only a slight variance on this.

As you can imagine though I am still clinging to the small chance that my tinnitus, vertigo and hearing loss is gluten related and when I cut that out the symptoms will disappear and maybe even the tinnitus and hearing may return.

Also since I am 22 spending the next 60 years of my life alcohol free, caffeine free and salt free is fairly daunting. So far I have come up with Vegetables & Nuts which I can actually eat without aggravating these two diseases. I cant do this. I am also unwilling think I wouldn't honestly prefer to be dead then spend the rest of my time eating vegetables and steak, it makes me gag the veggies and the steak you'll get sick of 7 days a week!

ATM I am going gluten free and just HOPING. I eliminated all antibodies in 3 months through strict dieting when I was 19, blood tests proved it, so ATM I am going gluten-free for about 3 months and if the hearing hasn't improved then I have to look at going salt free, although I will simply reduce salt I am not going to stop things all together because what is the point of even living if you cant enjoy the 'moments in life' (any moments no caffeine, alcohol, cake, takeaway absolutely f all, dirt and vegetates for a life time worse than jail) because of disease.

Anyway I saw a bunch of posts on here most from years ago and people who haven't responded to personal contact. In short has anyone had the syptoms did the hearing get better was it related are they two separate things SHARE.

Coeliac & Meneries & Depressed by 22 and I hate everyone but most of all GOD

Food Allergies

Excellent link showing allergies and their relation to Meniere's. Many people diagnosed with Meniere's have been diagnosed with allergies to wheat, gluten, soy, and/or milk. Several people have simply reduced or eliminated these products from their diet and their vertigo and dizziness disappeared. For more information, research Celiac Disease. Experiment.

http://www.menieresf.../treatments.htm

Yes this is the hope I cling too. Meniere's is progress I will end up death. At this rate if I could stop it now and it was coeliac related I could perhaps retain near normal levels. Significant difference. Two days gluten free and the ear is as loud and pulsating as ever though had a bunch of Salty chips today, from an uneducated view they seem to have turned up the volume on the tinnitus which means menieres which means deafness, disability and quality of life gone.