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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?

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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--

http://www.glutenfreeforum.com/index.php?showtopic=13472&hl=

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Thanks ever so much Patti :) . Not very good with the searches here :ph34r:

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!

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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.

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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....) <_<

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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 :o or just wait to see if things settle down on the diet :huh::unsure:

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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 :o or just wait to see if things settle down on the diet :huh::unsure:

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.... :blink:

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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.

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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

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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!

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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.

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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.

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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. 

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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,

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