Tonsil Stones

[covsooze]

I get horrible foul tasting and smelling accumulations of food and bacteria in my tonsils which I've just discovered from the web are tonsil stones. I frequently have a low grade sore throat with them. I was wondering whether anyone else has them here and if there could be a link with celiac disease from the point of view of having a compromised immune system. Anyone stopped having them having gone gluten-free?

[jerseyangel]

There was a thread on this several months ago. That's where I found out what it was! I did have them from time to time--but have not had them again since going gluten-free. I've not even had a sore throat (knock wood!) At the time I was bothered by them, I also had a problem with feeling like I was going to choke when swallowing solids.

I found it--

https://www.celiac.com/index.php?showtopic=13472&hl=

[covsooze]

Thanks ever so much Patti . Not very good with the searches here

I'm wondering whether for me there could also be a dairy connection, as I have recently started having dairy again and have had other problems with it (mainly GERD). I had decided to go DF again and maybe that will be the answer. My tongue is also very yucky at the moment, so there's obviosuly something not right going on there!

[DingoGirl]

Ewwwww - gross! I have them too, and STILL have them almost four months gluten-free. Not as much, though. Tonsil stones.....what next??

[Ursa Major]

Wow, my second-youngest daughter (20) has had chronically inflamed tonsils, and has been complaining about taking those things out of her tonsils! She went to an ENT specialist, and he only told her that he won't consider taking her tonsils out if she is not chronically ill. Just having strep throat and tonsillitis five times a year doesn't qualify (jerk).

I have had a feeling that she has celiac disease as well, because she has symptoms. But she is not willing to really look at that yet. I just sent her an e-mail with the info on tonsil stones (plus a bunch of links I googled). It's amazing what I learn every day from you people!

It's good to know that being gluten-free might fix the problem. I told her it may fix her huge tonsils, but she didn't believe me and wants them removed. Now with this new info, maybe she'll try going gluten free.

[jerseyangel]

Yea Ursula--I think it's deinately worth a try for her. Like I said, I have not had one sore throat in 10 months (the time I've been gluten-free). No more gaggging or feeling that there was something in my throat, either. (now, if I could say the same about my stomach....)

[Felidae]

I think I have only had one since going gluten-free. I used to get those all the time.

[covsooze]

Yea Ursula--I think it's deinately worth a try for her. Like I said, I have not had one sore throat in 10 months (the time I've been gluten-free). No more gaggging or feeling that there was something in my throat, either. (now, if I could say the same about my stomach....)

So why do I still get them? I'm wondering if having a low grade sore throat all the time is attributable to the stones and whether it means I should have my tonsils out or just wait to see if things settle down on the diet

[DingoGirl]

So why do I still get them? I'm wondering if having a low grade sore throat all the time is attributable to the stones and whether it means I should have my tonsils out or just wait to see if things settle down on the diet

You know...my mom, in her late 60's, was getting them off and on, and the doctor told her part of her tonsil had grown back, said it was tonsilitis, and gave her an antibiotic. But, she just said that her tonsil is swollen again....

[lonewolf]

Where was this board 19 years ago? I had my tonsils taken out then after numerous bouts of tonsilitis and courses of antibiotics. I had those "stones" and never knew what they were until I read this thread. I had wondered if it had to do with my diet later on (like, 9 years later) and now I'm sure of it.

[kevsmom]

I wasn't diagnosed with celiac until age 46, but up until that time I was only having occasional bowel problems. Thinking back now, as a child, whenever I got a sore throat my tonsils would swell up and have these white humps on them.

Cindy

[jenn]

Ive had the tonsil rocks all my life. I went thru my childhood having one strep after another...but never enough to get my tonsils taken out.

I have not been "officially" diagnosed with celiacs, but after going on the diet, I still had the tonsil rocks! I finally complained enough to my dr and he sent me to an ENT who agreed to take out my tonsils. She couldn't contrib the rocks to the gluten. She did a culture of the bacteria in my tonsils, and it was like 250% higher than the norm.

Anyway, the tonsils are gone, and I have been so extremely happy with my decision to have them removed. No more "death warmed over" breath (LOL), and no more throat irritations.

2 of my 3 kids have the rocks, and the other just has the hugh tonsils like I did.....THE TONSILS ARE COMING OUT!!! I can't put my kids thru all the nasty stuff I went thru having these stupid tonsils. I will have the tonsils out while they are young...it is SO much harder as an adult....but I wouldn't change a thing!

[lonewolf]

2 of my 3 kids have the rocks, and the other just has the hugh tonsils like I did.....THE TONSILS ARE COMING OUT!!! I can't put my kids thru all the nasty stuff I went thru having these stupid tonsils. I will have the tonsils out while they are young...it is SO much harder as an adult....but I wouldn't change a thing!

Tonsils are actually an important part of your immune system. I had mine out at age 23 after a lot of problems, but now I see that they were diet related and it could have been avoided. You might want to consider changing your kids diet and seeing what happens with their tonsils before having them removed. You don't want to just remove a major symptom without knowing what's causing it.

[shai76]

I've always had them. My sister and I callt hem "stinkards." I never knew they had an actual clinical name. My ENT said everyone gets them. I have noticed that the tube between my ear and my throat starts to itch when I have them bad. They increase with allergy problems too. I think they are probably related more to allergies than the intolerance. Everything I have read about them says they are bacteria caused from post-nasal drip, so I guess that means they are related to allergies and sinus infections, probably with colds too. Come to think of it I have noticed I also get them more when I am sick.

[Tam Hass]

I looked this post up specifically because I was brushing my teeth last night and thought wow it's been ages since I coughed up those again, and was checking my throat but no sign of them. 

I am off gluten for two years almost, and a range of symptoms have disappeared. And yes there is the temptation to think everything is connected to gluten, but actually so many things are. 

Seeing so many people say they had them all their life, like me (along with regular sore throats the last few years) and also like me now have no symptoms after stopping gluten, is a fair anecdotal confirmation that these are gluten related.

There are other causes of them probably, but good to have them on the list of symptoms that people should consider in light of possibly being celiac / gluten intolerant. 

[RMJ]

I wish mine would go away.  Being gluten free for years hasn’t made any difference.

[Posterboy]

2 hours ago, RMJ said:

I wish mine would go away.  Being gluten free for years hasn’t made any difference.

RMJ,

Try reading this thread....it might help you ...it has a lot of good research about this topic.

 https://www.celiac.com/forums/topic/122593-tonsillectomy/?tab=comments#comment-997652 

(I am not sure why the thread didn't link ...but you can just copy and paste in a browser to follow the thread or right click on it an open it in a new tab)

I used to get horrible mouth sores (a similar condition) and when I do today ( though it is rare) taking the Amino Acid Lysine always helps them.

I hope this is helpful but it is not medical advise.

Posterboy,

[Rascally]

52 years old, and found that a gluten-free diet eliminated my tonsil stones.  I was 42 when I made the decision to find the root cause of my chronic bowel issues (bowel issues began when I was sick for six months at the age of 21; sick with an as-yet-unknown virus that caused severe migratory inflammation, affecting various body joints).  I'm not a medical professional, but I am a researcher.  After nearly 20 years of ignoring my bowel problems, I used my non-professional skills to conduct experiments that removed groups of foods, isolated single substances, and changed various eating habits.  What I have come to believe is that I am able to consume very small amounts of gluten without any noticeable symptoms.  To provide an approximate value, I can eat 1 piece of toast every day or two, and experience no symptoms.  Today my bowels work correctly, and as an added benefit my tonsil stones stopped occuring.  I have been able to maintain this scenario for up to 8 months at a time, but eventually I choose to break my rules and enjoy some gluten. When I increase gluten consumption, my bowels are a mess within 12 hours, and bloating starts with in hours.  Tonsil stones follow a week or two later.  I assume the delay is the time it takes to produce and expel the stones.  In addition to gluten-containing foods, I enjoy beer.  I have found that I can consume beers with lower-than-average gluten, like Corona and Heineken.  But, quantity matters, because these beers contain gluten.  What seems to be ok for me, is 2 beers a few times per week.  If I decide to have 4 beers in one evening my bowels will remind me the next day.  Higher consumption makes a very nasty mess in my bowels.  I'm including all this just yucky detail for anecdotal value, but of course every person's experience will be different.  Certainty a Celiac person should not consume any amount of gluten.  Of further interest... at one time I believed that dairy was also responsible for my bowel symptoms, but I believe this to be untrue.  So long as my stomach and bowels are working well from my efforts to consume little or zero gluten, I can consume milk, yogurt, and cheese without concern for quantity.  Conversely, if I have bowel problems related to over-consuming gluten, dairy will exacerbate bowel problems and increase bloating.  So, the key for me to have a well-functioning body, is to severely restrict or eliminate gluten.  The final benefit is that I have less joint pain following exercise.  I play Squash at a pretty competitive level, and this game is very demanding on muscles, joints, and cardio.  Possibly from my joint-inflammation-illness when I was 21, exercise causes significant pain, as measured against other players that work just as hard, and report no joint pain.  When my bowels are working well, my joint pain is mild, and when we my bowels are irritated and not functioning correctly, my joint pain from exercise can be quite painful, leading me to take Advil for 12-24 hours.  So again, a gluten-free diet has proven to be an amazing benefit to my life, it the least of which is the confidence that stinky tonsil stones aren't polluting my breath and offending others.  Thanks to all other that have shared their experiences, and I hope my notes here might be useful in some way.  

[MisterSeth]

I had asparagus ears all the time too. it probably is your saliva not digesting the proteins in the back of your throat. it contains the same enzymes as the rest of the tract

[Uncle Freddie]

Hi, just wanted to add to this topic: I went gluten-free 20 years ago. Before that, I would get tonsil stones. At the time, I didn't know what they were called, I just knew they smelled bad.  After going gluten-free, I have not had a tonsil stone in 20 years.

[MisterSeth]

9 hours ago, Uncle Freddie said:

Hi, just wanted to add to this topic: I went gluten-free 20 years ago. Before that, I would get tonsil stones. At the time, I didn't know what they were called, I just knew they smelled bad.  After going gluten-free, I have not had a tonsil stone in 20 years.

i had that too, cutting gluten eliminated it, I think its plaque bacteria eating the lactose in the back of your throat that didn't dissolve. also explains why it seemed to come and go