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Tonsil Stones


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31 replies to this topic

#16 Amyleigh0007

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Posted 27 July 2009 - 07:37 AM

Can someone tell me more about these tonsil stones? I too have had them but I had no clue what they were!! What are they from? Why do we get them?
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Amy

1989: I am diagnosed with IBS.
3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.
6/08: My Celiac test is negative.
7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!
7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.
8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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#17 Generic

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Posted 27 July 2009 - 01:22 PM

I still get them from time to time. Always have, probably always will. I've been gluten free for 21 years. The only way I would ever have my tonsils removed is if I had constant infections, ie strep throat, etc.
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#18 modiddly16

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Posted 28 July 2009 - 05:00 AM

I had to get my tonsils out too because of these stones. It happened a few months after I got diagnosed, I had huge stones that I started to take out on my own (gross, I know) But it got so bad that I had to go get them taken out!
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#19 modiddly16

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Posted 28 July 2009 - 05:06 AM

also in response to some of these replies.....you can just individually decide to get your tonsils out, you obviously have to have a doctor's diagnosis. So if you have a doctor, whom you trust, telling you it's in your best interest, why would you not follow their suggestions? I was sick all the time and had these stones for years. I haven't been sick once since I got my tonsils out, minus the flu one year, and I used to get strep throat regularly. Instead of urging someone not to get their tonsils out, I urge people to go see someone qualified to give you a proper diagnosis!! Hopefully you'll feel better soon!
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#20 wendstress

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Posted 28 July 2009 - 09:15 AM

That is SO interesting. I've had these for years and years.... Even saw my Dr. about them once about 10 years ago and he told me it wasn't a big deal.

I have also had a yellow or white coating on my tongue that gives me terrible breath. I have been so self concious.

Ironically, just last week I picked up a new mouthwash and toothpaste that has helped enormously. The product line is called "TheraBreath" from Dr. Harold Katz. The information in the box described so perfectly what I have been dealing with that I am a believer! Website: http://www.therabreath.com/

Since I starting using this stuff, my breath has improved like 75%. I'm hoping it will continue to get better as my gluten free journey continues.
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Dx with Celiac Disease on 12/31/08, went gluten-free shortly after
Dx with Gastritis and Lymphocytic Colitis on 3/4/09
Summer 2009 - Lite on the Caffeine and Dairy

Mom to 2 amazing boys: James - 4, and Alex - 2

#21 TrillumHunter

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Posted 28 July 2009 - 12:29 PM

I had these for years. I did finally have my tonsils out not because of the stones but because the crypts were holding infection. I couldn't get completely over strep and it traveled to my ear. I had ear infections so badly that I have a loss on one side. My gp said, "not that bad." My ENT said, "worst adult case he'd ever seen." It was the worst surgery EVER and I've given birth naturally a few times. But I haven't had a real cold since I had them out--about nine years. I never get sick with a cold and I haven't had another ear infection. I wish I had done it sooner as it made me quite sick.
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#22 Generic

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Posted 28 July 2009 - 04:32 PM

Yes, I agree if your Dr. says they gotta go, they should. Unfortunately for awhile there the Dr.s were a little too eager to take them out.

My daughter had her tonsils and adnoids taken out last summer. She was having sleep apnea issues because they were so large. It was a very miserable recovery. I begged the Dr.s for years to take them out, due to chronic strep throat. They would always say "well if she gets it one more time this year....." She hasn't gotten as sick from the flu etc, like she used to (keeping my fingers crossed). Before she got sick with everything and always had a sore throat. So sometimes it's better to have them yanked.
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#23 QueenOfPain

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Posted 28 July 2009 - 05:06 PM

Ah ha! I've dealt with tonsil stones since my late teens. After I found out about Celiac Disease I had a feeling that my crazy tonsil stones were probably linked to gluten. All of my other weird quirky problems were! Glad to hear I'm not alone.
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2/90 - Symptoms began. Diagnosed IBS.
4/08 - Positive Celiac blood test
5/08 - Negative Biopsies, but was advised to retake blood test in a few months
8/08 - Postive Celiac blood test again. Positive result came from a raised level of Antigliadin IGA antibodies.
9/08 - Decided to try the gluten-free diet. (Headaches and abdominal cramps subsided.)
12/08 - Intestinal issues FINALLY improved. Mouth sores stopped appearing.
1/09 - Negative Celiac blood test after being on a strict gluten-free diet. Self diagnosed Celiac.
The only quirky symptom left is my migratory joint pain. I'm hoping it will go away soon...

#24 puggirl

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Posted 28 July 2009 - 05:58 PM

I've had tonsil stones for my late teens and through my 20's and still do Im 28. Tonsil stones are mucus that drains from your sinus' I usually wake up with them and have to Pick them out by late morning, or they make me naucious. I have been Gluten free for a year and havent seen any difference. I hate getting tonsil stones, now that Im talking about it Ill probly wake up with one tomorrow! I usually Gargle Salt water after I get them out to clean out the crevas.
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#25 susanclifford

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Posted 19 June 2014 - 03:19 PM

I have read previous posts on the forum and realize that a condition that has plagued me since childhood called tonsil stones or cryptic tonsils is related to celiacs. It seems that most people see a reduction in this symptom- nastly smelly white lumps, swollen tonsils, terrible odor. I have been gluten free for four months now and am still having chronic sore throats with swollen tonsils and the white lumps.

My questions:
1) How long did it take folks to notice a change in this symptom with the gluten free died? I am being impatient or not responding.
2) What treatments have worked for flare ups, besides surgery!

Thanks

I had to stop both gluten and cashews to get rid of this affliction. Perhaps you are reacting to some other substance. I took a food sensitivity test which pointed me in the right direction. Don't give up.


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#26 kareng

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Posted 19 June 2014 - 03:25 PM

I had to stop both gluten and cashews to get rid of this affliction. Perhaps you are reacting to some other substance. I took a food sensitivity test which pointed me in the right direction. Don't give up.


Just an FYI - the post you are responding to is 6 years old. I don't think that poster has been on for a few years.
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#27 across

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Posted 20 June 2014 - 05:33 AM

Wow! I had no idea these were related to celiac. I've had these since I was a kid. It makes me wonder just how long I've been celiac, since many of the symptoms I have, I had even as a child (only to a lesser degree). I'm middle aged, and it's a little scary to think that I've been sick my whole life without knowing it.


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#28 StephanieL

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Posted 20 June 2014 - 06:53 AM

Where was it mentioned that it relates in any way to Celiac? I have never heard this.

 

Usually there is a criteria of 3-4 cases of tonsillitis or strep in a one year period for a Dr. to take tonsils out. It is MUCH harder on adults and there is a higher incidents of bleeding issues in adults. Also, they crypts often reappear making it not worth the procedure.  


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#29 kareng

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Posted 20 June 2014 - 06:55 AM

Wow! I had no idea these were related to celiac. I've had these since I was a kid. It makes me wonder just how long I've been celiac, since many of the symptoms I have, I had even as a child (only to a lesser degree). I'm middle aged, and it's a little scary to think that I've been sick my whole life without knowing it.

Where was it mentioned that it relates in any way to Celiac? I have never heard this.

Usually there is a criteria of 3-4 cases of tonsillitis or strep in a one year period for a Dr. to take tonsils out. It is MUCH harder on adults and there is a higher incidents of bleeding issues in adults. Also, they crypts often reappear making it not worth the procedure.

I haven't seen that "tonsil stones " are caused by Celiac. It's just people on here saying they have them. I think in any population of people, some will have them. So..... Let's do the math....out of almost 14,000 views of this topic - assume some are duplicates - maybe 1000? That means that out of the 13,000 people who have viewed this - 15? Have commented that they have tonsil " stones".

Granted that math isn't very good but...... Nope....I am not seeing a correlation. :)

I think people want to blame every physical ache, pain, illness, global warning and pet overpopulation on Celiac. The fact is, we all get different " illnesses" or " conditions" and so do people who don't have Celiac to blame.
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#30 across

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Posted 20 June 2014 - 07:40 AM

Where was it mentioned that it relates in any way to Celiac? I have never heard this.

 

Usually there is a criteria of 3-4 cases of tonsillitis or strep in a one year period for a Dr. to take tonsils out. It is MUCH harder on adults and there is a higher incidents of bleeding issues in adults. Also, they crypts often reappear making it not worth the procedure.  

The OP said, "I have read previous posts on the forum and realize that a condition that has plagued me since childhood called tonsil stones or cryptic tonsils is related to celiacs." 

 

I was just reacting to that post. 


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