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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Tonsil Stones
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32 posts in this topic

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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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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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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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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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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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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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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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 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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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