Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Ear Problems Associated With Celiac


twinsmom

Recommended Posts

Monday Newbie

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.

I had a similar problem until I removed high fiber supplements from my diet. They are in a lot of foods, drinks, and powders.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 55
  • Created
  • Last Reply

Top Posters In This Topic

  • Joni63

    9

  • twinsmom

    8

  • dollamasgetceliac?

    7

  • flourgirl

    4

Top Posters In This Topic

  • Joni63

    Joni63 9 posts

  • twinsmom

    twinsmom 8 posts

  • dollamasgetceliac?

    dollamasgetceliac? 7 posts

  • flourgirl

    flourgirl 4 posts

GladGirl Rookie

Since I was just diagnosed with Celiac Disease, although overlooked for years...I will relate my experience thus far with my ear problems.

When I was 4 years old with a very bad ear infection, they did the same thing to me that was done to you. It hurt so so bad!! My left ear. It healed and then I started having more problems with vertigo and otitis media(fluid build up inner ear) in my late teens, treated by removing my tonsils and adenoids and of course antibiotics. All seemed to be better until I was about 50 years old (9 years ago now). I developed tinnitus (ringing in the ears)very badly along with otitis media and "talking with an echo" in my hearing. First, I went to an ENT in MD, Waldorf to be exact. He tested me with tuning forks and a few "helmet" procedures on my first visit because I had lost quite a bit of my hearing. He said to my husband and I that he thought I may have a brain tumor, called an "Acoustic Neuroma" which is usually benign, however, very tricky to treat. Scared us I might add and ordered a brain MRI with contrast. Thankfully, this was not the case. He put me on steroids and strong antibiotics...with no relief. I too went for a second opinion and found a wonderful doctor! He is an otaralyngologist (specialy in ears, hearing), will post him here for you. Not sure where you are in Maryland, but he was great. We ended up putting tubes in my ears. Outpatient, did a scan as well and even though I still have some hearing loss and tinnitus...thank God, the echo never returned. Evidently there was enough nerve damage over the years, that my hearing loss will never be better and perhaps the tinnitus too. I lost about 23% of my hearing in both ears, but am able to do well even so. Just turn up the volume on my phone and tv. (read lips a little bit too!! LOL) The tinnitus really doesn't bother me anymore...I have gotten used to it. Here is the link to Dr. Edford Chambers:

http://www.everydayhealth.com/doctors/dr-edford_o_chambers_md-3428498

I know how this is soooooooooooo bothersome, but according to what Dr. Chambers told me, my ear canals are about the size of a 5 year old child, which creates a big problem for wax buildup, easy infection and so forth. He advised me to not get water in my ears...so no more snorkeling...but I have not had any more infections since.

Good luck to you on your progress. Wishing you the best!

Link to comment
Share on other sites
  • 4 years later...
Theri Apprentice
On 3/27/2008 at 2:32 PM, VioletBlue said:

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 was just researching this. I have returned to the gluten challenge. My ears hurt and are full of pressure. Of course this made me cutious if there is a relation to gluten. There is. For celiac, gluten sensitivity and for wheat allergy. If you can tolerate garlic it is recommended. Also something like ibuprofen, sudafed and make sure you are not being glutened. Too late to help you now, but maybe it will help others. 

Link to comment
Share on other sites
  • 2 weeks later...
Kathouse Rookie

These ear issues are interesting! I, too have had ear problems all my life. I was told in 1996 I had Meniere's disease, which I don't. Very bad Tinnitis in my right ear, like background noise 24/7. And I get random high pitched buzzing that goes away in seconds. I also had chronic sinus infections. Feb 2016 I had sinus surgery and deviated septum fixed. My symptoms worsened and I was p***** off!! I  still got ear infections, major fluid build-up, dizziness, nausea, etc etc. There's always a fullness feeling in my ears/head too. I CAN say that I haven't noticed these symptoms since eliminating G 6 weeks ago. However, I have increased joint/knee pain, breast pain, and anxiety/depression. My psych doc is increasing my antidepressant. Yay me!! I feel like it's ALWAYS something with me. My husband is starting to get sick of my negative attitude. *sigh*

Link to comment
Share on other sites
Theri Apprentice

Hello Kathouse. I know the feeling with ears and sinus. Weather changes mess me up. Anxiety and depression is probaly stemmed from celiac. My nerves are on edge many days. That became worse after diagnosis.  Hope your miseries subside.

Link to comment
Share on other sites
  • 3 years later...
Karenlisa Newbie

I was  reading the other post and decided to share my experience with the group: I was five years old when I was diagnosed with a hearing lost. By the time I was five years old when the doctors took my tonsils out. After the doctors took my tonsils out the fun began. There was water in my both of my ears. My tubs on side of my face was not coming down  and I have already been through  seven operation on PA tubes. My hearing was decline every year and developing water. I would get ear bleeds and green stuff in ear. Stomach issues all way. Thirteen came the put my tonsils back in as implant. This allowed me to breathe and talk again. Speech therapy since ages 5-17 and tubes came down open ear. Damage was done to my inner ears and I  could not take any more operations to put tubes in my ear. 13-20 years of age I could not ear at all. At age of 20 received hearing aids. 20-40 years of age I  was diagnosis with colic disease. Once that happen I had baha on to hear as part cochlea Implant. Got second opinion at MA John Hopkins from Dr. Lamb and he stated it was physical reason I could not hear and that it would go down before it came back up hearing. I had hearing mind you 10 % in left and 20 percent in right  made high school, college and master by reading lips. When grades in college drop it was time get hearing aids. Then one day I took in my own hands I got tried of being test. I change my diet gluten free, no plant food, more water, and decided to excises more. By the time I was 40 I was 85 % with hearing but still had a combine diagnosis with AIDE, Colic disease, and got Lyme disease( which did not help). At the present time I am talking, hearing and now the doctors are treating me for drop falls from Meanies Disease , which is contact to all of other diseases. Remember, I  had allergies all my life as well and grow out of them by 30 years old. I still wear hearing aids, but now I hear from both ears and can talk on phone with my Comp-pilot devices that allows all the communication and blue-tube devices to be pick up by my hearing aids to my brain. I am back on track and feeling better. I want to my first concert at the age of 40 being I finally heard words from music. Hope this helps.           

Edited by Karenlisa
Link to comment
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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...