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Tonsil Stones


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31 replies to this topic

#1 Chiron

 
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Posted 07 April 2008 - 03:06 AM

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
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Biopsy Confirmed Celiac: January 10, 2008.

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#2 modiddly16

 
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Posted 07 April 2008 - 04:23 AM

I know this probably is not what you want to hear...but I had to get my tonsils out because of it...it never did clear up
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#3 jewi0008

 
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Posted 07 April 2008 - 05:16 AM

I know this probably is not what you want to hear...but I had to get my tonsils out because of it...it never did clear up


I also had to get mine removed. I never really get sore throats anymore...it's great! However, after I got them out I started to develop other oral problems. Teeth pain, sore mouth, dry mouth, chronically irritated mouth. Hmmm....
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#4 jerseyangel

 
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Posted 07 April 2008 - 05:21 AM

I'm happy to report that my tonsil stones went away and have never returned since going gluten-free. I also had a white spot at the the back of my throat for years that cleared up.

I'm not sure how long it took, after I had been gluten-free for a while, I just noticed that I was not noticing the feeling of having something in my throat, the difficulty swallowing, etc.
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#5 Lisa16

 
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Posted 07 April 2008 - 05:53 AM

I also had to get mine out-- sorry to tell you. I ran a low-grade fever for two years before the doctors finally decided surgery was necessary.

I wish you the best of luck.

On the plus side, that surgery wasn't really so awful... there are worse ones out there.

Lisa
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#6 lonewolf

 
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Posted 07 April 2008 - 08:03 AM

I had chronic problems with my tonsils, including gross little white clumps that I would have to pull out with long tweezers. This was years before I knew I had problems with gluten. I had to have them removed in my early 20's. I've often thought that if I had known then what I know now about gluten and other food intolerances, I wouldn't have had the problem with my tonsils. (Or many of the other health problems I suffered with.)
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

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#7 SillyBoo

 
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Posted 07 April 2008 - 02:41 PM

Oh, my gosh! I have had those since I was a kid, too, but never had a clue why. Of course, my doctor was equally clueless. I am now 52, and gluten-free for a year and a half. Mostly, they are gone. In fact, right now I have none at all (Yippee!!!). I found it helpful to also cut out all dairy.
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#8 Candy

 
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Posted 07 April 2008 - 06:18 PM

My God! my tonsils and back throat have been hurting me too for about 2 weeks, since i've been gluten-free for about 6weeks. I figure all my ailments are do to Celiac ,since I'm otherwise health as a horse.It hasn't gotten smelly,or white,but it was hurting bad enough for me to think"I might have to get these tonsils out".
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I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

#9 Daxin

 
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Posted 07 April 2008 - 09:15 PM

I too had to have my tonsils out because of them, but that was Pre Diagnosis. I was in my late 20's and the doctors did not know how to get them to stop...chronic tonsil infections though usually means they have to go.
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#10 AliB

 
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Posted 08 April 2008 - 02:12 AM

For goodness sake don't get them removed. The tonsils are a window to the health of the body and if inflamed or exuding a deposit that is a clear sign that your body is not right and is struggling to cope. Get the body right and the tonsil problem will clear up! If they are not there, your body has one less way of getting rid of rubbish. The Medical Profession has a thing about removing symptoms rather than getting the source sorted out (not that they would have the first clue how to!). Inflamed or infected tonsils are a symptom, not a cause! If you get an infection in your finger, you don't cut it off and throw it away!

If you have a lump in your throat, difficulty swallowing, white patches or a recurring sore throat then the likelihood is that you are riddled with Candida or yeast and/or have food intolerances. The smelly discharge from the tonsils is your body's way of trying to dispose of toxins and/or infections.

I have had those lumps too over the years, and boy do they stink! They look and smell like solidified pus. If you have bad breath, then it is highly likely that it is coming, not from your teeth as commonly assumed, but from your tonsils and your digestive tract.

The high-sugar, high-carb diet that we are used to consuming is evil and it is killing us. When we go gluten-free, the usual thing is to look around for replacement carbs. I have found that commercially made gluten-free foods are often not only high in carbs but very high in sugar too which may explain partly why some get this problem after going gluten-free. The other thing is too that now they are gluten-free the body is trying to throw off some of the toxins it has been accumulating over the last ? years.

Dairy is another food group that can contribute to this problem.

The best way to help our bodies recover is to eat as simply as possible. Stick to plain unprocessed unadulterated meat, fish and poultry, fresh fruit and veg, and a little honey if you can't cope without any sweetness. At least, unlike sugar which is completely devoid of any benefit, honey has vitamins and minerals - but make sure you get a relatively good quality one. Drink plenty of fresh pure water to help the toxins flush out (the common current suggestion of 8 glasses a day is an ambitious estimate - 4 is probably more realistic).

The less 'mucked about' and processed food we put into our mouths, the more likely we are to see a return to health. The body is not a garbage dump, but it might as well be when we take stock of what we throw at it on a daily basis!
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#11 VioletBlue

 
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Posted 08 April 2008 - 12:35 PM

I had them from my early twenties on. I'm 46 now. They were never constant, would come and go. So I can't tell you how long it's been exactly. I haven't had an "outbreak" in at least nine months. I've been gluten-free for 17 months, approaching that all ellusive 18 month mark, YEAH.
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#12 Chiron

 
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Posted 08 April 2008 - 12:45 PM

I am going to try and be patient and hope this symptom clears up in time. I don't want to put myself through surgery unless I know for sure the tonsil stones are here to stay. I have lived with them for years now, I can last a bit longer. I don't relish the idea of surgery but just can't help but think living in a state of chronic infection is not good for the body either.

I am fascinated to know that this along with a myriad of other things I experienced but Drs couldn't explain all have there roots in celiacs. I used to think I was a medical freak with all these random complaints. But now I know the root cause. Gluten
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Biopsy Confirmed Celiac: January 10, 2008.

#13 JNBunnie1

 
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Posted 08 April 2008 - 03:55 PM

I am going to try and be patient and hope this symptom clears up in time. I don't want to put myself through surgery unless I know for sure the tonsil stones are here to stay. I have lived with them for years now, I can last a bit longer. I don't relish the idea of surgery but just can't help but think living in a state of chronic infection is not good for the body either.

I am fascinated to know that this along with a myriad of other things I experienced but Drs couldn't explain all have there roots in celiacs. I used to think I was a medical freak with all these random complaints. But now I know the root cause. Gluten



What's going on with your tonsils is actually not the CAUSE of any infection, but the RESULT of systemic overload. It is a very good warning sign, one that you would be without should you get them removed.
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If you're going through hell, keep going. ~Winston Churchill

#14 klala

 
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Posted 26 July 2009 - 10:11 PM

My sophomore year of college I had tonsil stones in one tonsil and the crypt in my tonsil kept getting deeper and deeper. I was so insecure about it, and I had this horrible taste like garbage in my mouth all the time. I got only one tonsil removed after a few months of dealing with the grossness and the doc said it was just FULL of these sulfuric bits that I couldn't even see because they were so deep in the crypt. I haven't had any since, but I just realized my gluten intolerance this past January (2 years later). And tonight I began to wonder if gluten intolerance and tonsil stones are correlated.
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#15 mommida

 
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Posted 27 July 2009 - 06:43 AM

My daughter has been diagnosed with Eosinophilic Esophagitis. Guess what? Those "tonsil stones are my window to the damage in her esophagas. EE has "trigger foods" like gluten.
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Michigan




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