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Celiac, Candida And Nystatin
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15 posts in this topic

Hi everyone,

I was diagnosed with Celiac through a blood test along with candida albicans; my level for candida was +3.3 about 3 months ago. My Dr. put me on liquid Nystatin 1,000,000 units (about a tablespoon) 4x a day. I have been following the yeast and gluten free diet devoutly.

I am wondering 2 things:

Has anyone on this forum has had success in treating celiac-related candida with nystatin? As restrictive as a gluten free diet is, gluten free is paradise compared to a candida diet!

When/did those who took nystatin stop the die off reaction? 3 months in and I am still feeling the die off with each dose I take. (The naturopath, who is angry I am taking a prescription, just said I was "weird" and she'd never known anyone to herx throughout the whole dose.)

This is such a positive place to get feedback. I really appreciate anyone's help with this.

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I have to wonder if you are reacting to the Nystatin rather than experiencing die-off, since it's going for this long and you feel it after every dose.

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I have to wonder if you are reacting to the Nystatin rather than experiencing die-off, since it's going for this long and you feel it after every dose.

I think you might be right. The pharmacist pointed out that the liquid Nystatin I was taking was 33% sucrose. The herxheimer reaction I got every time I took it could have been a reaction to liquid sugar.

I am going to have the format of the Nystatin changed to pill form and take the herba anti-fungals my naturopath recommends.

Does anyone else have celiac/candida success strategies they can share?

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I think you might be right. The pharmacist pointed out that the liquid Nystatin I was taking was 33% sucrose. The herxheimer reaction I got every time I took it could have been a reaction to liquid sugar.

I am going to have the format of the Nystatin changed to pill form and take the herba anti-fungals my naturopath recommends.

Does anyone else have celiac/candida success strategies they can share?

I know exactly what you are going thru as I did the Candida diet twice in my lifetime, when I thought my problem was all Candida and knew little to nothing about Celiac. Turns out I had both problems but following the Candida diet and taking Nystatin made me feel a whole lot better. You are also correct in that the Candida diet is much harder to deal with than going gluten free....the gluten-free diet is easy compared to that.

Here is what I learned in the 2 years I followed the diet....taking liquid Nystatin is a big no-no as it's mainly sugar and sugar feeds yeast. Yes, hard to believe that anyone would prescribe a sugar laden med to combat Candida but that's how deep the ignorance goes! :o You need to get the powdered form of Nystatin and either have it put into capsules OR mix it with water and drink it...which is what I did. The sugar laden Nystatin is mainly used to give to infants with thrush so they'll swallow it. Nystatin by itself is not the greatest thing taste-wise and infants would spit it out. It still feeds the yeast and that's why some babies have repeat occurrences of thrush but try telling the medical profession that! DUH! You are actually making the yeast growth worse by using this form and that's why you are having reactions. Been there, done that, no thank you.....

If you follow a strict Candida, absolutely no sugar diet :( , and take the Nystatin in it's natural form, it should clear up the problem well. I got sick from die off within a month of starting this regimen and got a Rx for Diflucan to take as an added boost and it worked well. After about 6 weeks on the diet when the die off subsided, I felt better than I have felt in years. Still had Celiac but I didn't know it at the time. The Candida diet will make a Celiac feel better because you cannot have any refined carbs at all. The only carb I ate was brown rice....nothing white at all.

I wish you luck with this because it is hard....mood swings from hell from the sugar withdrawal. Gluten was a piece of cake to give up compared to this! However, those level out after a few weeks and you get your sanity back.

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I know exactly what you are going thru as I did the Candida diet twice in my lifetime, when I thought my problem was all Candida and knew little to nothing about Celiac. Turns out I had both problems but following the Candida diet and taking Nystatin made me feel a whole lot better. You are also correct in that the Candida diet is much harder to deal with than going gluten free....the gluten-free diet is easy compared to that.

Here is what I learned in the 2 years I followed the diet....taking liquid Nystatin is a big no-no as it's mainly sugar and sugar feeds yeast. Yes, hard to believe that anyone would prescribe a sugar laden med to combat Candida but that's how deep the ignorance goes! :o You need to get the powdered form of Nystatin and either have it put into capsules OR mix it with water and drink it...which is what I did. The sugar laden Nystatin is mainly used to give to infants with thrush so they'll swallow it. Nystatin by itself is not the greatest thing taste-wise and infants would spit it out. It still feeds the yeast and that's why some babies have repeat occurrences of thrush but try telling the medical profession that! DUH! You are actually making the yeast growth worse by using this form and that's why you are having reactions. Been there, done that, no thank you.....

If you follow a strict Candida, absolutely no sugar diet :( , and take the Nystatin in it's natural form, it should clear up the problem well. I got sick from die off within a month of starting this regimen and got a Rx for Diflucan to take as an added boost and it worked well. After about 6 weeks on the diet when the die off subsided, I felt better than I have felt in years. Still had Celiac but I didn't know it at the time. The Candida diet will make a Celiac feel better because you cannot have any refined carbs at all. The only carb I ate was brown rice....nothing white at all.

I wish you luck with this because it is hard....mood swings from hell from the sugar withdrawal. Gluten was a piece of cake to give up compared to this! However, those level out after a few weeks and you get your sanity back.

Thank you so much for this information! I had no idea that the ignorance went as deep as you point out it has. I figured the manufacturer knew what they were doing. But your point about infants and thrush makes sense. They can't take pills and would spit out something bad tasting.

I have been good with the candida/no sugar or starch diet (not even diet coke and fake sugar!) and still felt badly. I was crying with frustration and fear that I would never get better. Driving my naturopath (who wanted me to only use garlic, caprylic acid etc and didn't know enough about Nystatin liquid b/c that's not her field) and my therapist insane.

I think I will stick to my naturopath's recommendations until I can get my GP to switch to the Nystatin pills.

It is wonderful to hear that you recovered and can live on the Celiac diet and feel well. I am aspiring to get there.

Thanks to you and to the other well-informed people on the forum. I don't know what I would do without all of you to help me problem solve.

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Thank you so much for this information! I had no idea that the ignorance went as deep as you point out it has. I figured the manufacturer knew what they were doing. But your point about infants and thrush makes sense. They can't take pills and would spit out something bad tasting.

I have been good with the candida/no sugar or starch diet (not even diet coke and fake sugar!) and still felt badly. I was crying with frustration and fear that I would never get better. Driving my naturopath (who wanted me to only use garlic, caprylic acid etc and didn't know enough about Nystatin liquid b/c that's not her field) and my therapist insane.

I think I will stick to my naturopath's recommendations until I can get my GP to switch to the Nystatin pills.

It is wonderful to hear that you recovered and can live on the Celiac diet and feel well. I am aspiring to get there.

Thanks to you and to the other well-informed people on the forum. I don't know what I would do without all of you to help me problem solve.

The most important thing to do is not eat any sugar or food that will break down into sugars...refined carbs.

They feed yeast. For an example, place some yeast in warm water and add some sugar...this is called "proofing" the yeast. It proves the yeast is still good or active. The yeast goes wild!

Nystatin is a Rx anti-fungal. It is the big guns as far as combating yeast systemically. Caprylic acid is supposed to be very good also but I think for a really bad yeast issue, a Rx anti-fungal works best. It does take time and you may have to follow the diet for awhile....like recovering from Celiac. Once the problem is gone, however, you don't have to be as strict with the sugar intake. You may feel crappy for a couple of months too as the yeast is purged from your system. It does work well though.

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Hi everyone,

I was diagnosed with Celiac through a blood test along with candida albicans; my level for candida was +3.3 about 3 months ago. My Dr. put me on liquid Nystatin 1,000,000 units (about a tablespoon) 4x a day. I have been following the yeast and gluten free diet devoutly.

I am wondering 2 things:

Has anyone on this forum has had success in treating celiac-related candida with nystatin? As restrictive as a gluten free diet is, gluten free is paradise compared to a candida diet!

When/did those who took nystatin stop the die off reaction? 3 months in and I am still feeling the die off with each dose I take. (The naturopath, who is angry I am taking a prescription, just said I was "weird" and she'd never known anyone to herx throughout the whole dose.)

I successfully treated my candida infection (diagnosed by stool test) with nystatin. I took that for 3 months. I had side effects from nystatin during most of that treatment period. I don't believe in 'die off', but I experienced the listed common side effects from nystatin.

I agree that the 'candida diet' is waaaay too restrictive. I also haven't read that anyone with candida (idagnosed by stool test) ever 'starved out' their candida with that diet. I often read about people, who suspect they have candida, using that diet and then thinking they recovered from candida. However, I never read that they were actually diagnosed with candida by stool test before using that diet.

I have 6 diagnosed food allergies in addition to celiac (gluten intolerance restriction). I have lots of safe foods even with my 7 food restrictions. I tried the anticandida diet for 3 weeks when my NP suspected candida. I lost 4 pounds in 3 weeks and didn't need to lose any weight. Fortunately I didn't have candida at that time. So when I had measureable candida on a later test, I opted to take Nystatin, rather than try that diet again.

This is such a positive place to get feedback. I really appreciate anyone's help with this.

I successfuly treated my candida infection (diagnosed by stool test) by taking Nystatin for 3 months. (The next 4 stool tests were free of candida.) I don't believe in 'die off', but I did experience the listed side effects of Nystatin for almost all 3 months of the treatment period. Eventually my body adjusted to that drug and I stopped experiencing the symptoms.

Before I evern was diagnosed with Candida, I tried the 'anti candida' diet for 3 weeks and lost 4 pounds when I didn't need to lose an ounce. So when I acutally had candida, I opted to use Nystatin. I have celiac disease and 6 additional diagnosed food allergies. I have lots of safe foods with those 7 allergy restrictions. By comparison I had difficulty finding anything to eat on that candida diet.

I've read about people using the anticandida diet to 'starve' their yeastie beasties to death. However, most people using that diet were not actually diagnosed by stool test with candida. They just tried the diet because they thought their symptoms meant they had candida. So when the symptoms went away, they thought the diet cured them. I haven't meat anyone who recoverd from diagnosed (by stool test) candida, by using the anticandida diet.

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I successfuly treated my candida infection (diagnosed by stool test) by taking Nystatin for 3 months. (The next 4 stool tests were free of candida.) I don't believe in 'die off', but I did experience the listed side effects of Nystatin for almost all 3 months of the treatment period. Eventually my body adjusted to that drug and I stopped experiencing the symptoms.

Before I evern was diagnosed with Candida, I tried the 'anti candida' diet for 3 weeks and lost 4 pounds when I didn't need to lose an ounce. So when I acutally had candida, I opted to use Nystatin. I have celiac disease and 6 additional diagnosed food allergies. I have lots of safe foods with those 7 allergy restrictions. By comparison I had difficulty finding anything to eat on that candida diet.

I've read about people using the anticandida diet to 'starve' their yeastie beasties to death. However, most people using that diet were not actually diagnosed by stool test with candida. They just tried the diet because they thought their symptoms meant they had candida. So when the symptoms went away, they thought the diet cured them. I haven't meat anyone who recoverd from diagnosed (by stool test) candida, by using the anticandida diet.

Well then, consider me your first person who achieved this! :D I tried taking the Nystatin alone and it did not work without following the diet. I did do both, though, as you cannot get rid of candida with just the diet alone. If you keep feeding the candida, then it's difficult to eradicate it from your body. However, there are varying levels of infection so maybe some have luck with just using Nystatin...who's to say?

I also did not find the candida diet difficult after about a month....it's like Celiac, the longer you do it and the more you learn about food choices, the easier it becomes. It all depends on how badly you want to get better.

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I think you might be right. The pharmacist pointed out that the liquid Nystatin I was taking was 33% sucrose. The herxheimer reaction I got every time I took it could have been a reaction to liquid sugar.

I am going to have the format of the Nystatin changed to pill form and take the herba anti-fungals my naturopath recommends.

I think you misunderstood me. Nystatin is a fairly toxic drug and while it's supposed to be poorly absorbed, allergies and side effects are still possible. Herxheimer symptoms are not very specific and many of the symptoms overlap Nystatin toxicity reactions. Nystatin can damage your liver if your intestines are damaged enough from celiac that you are absorbing some of it.

I don't understand why folks take Nystatin for mild candidiasis. Candida is pretty easy to kill with probiotics and safe, natural foods like coconut oil. I'm not sure people grasp how toxic antifungals are. As one of my biology teachers said, "fungi are eucaryotes and so are we". Nystatin is safe if and only if your gut is in good enough shape that none of it gets through to your bloodstream. That's too big an if for me.

Agreed that diet alone won't cut it for candida. Nature abhors a vacuum and as soon as you shift off the restrictive diet it will grow right back unless you manage to get a good population of bacteria going.

By the way, you don't need a stool test to diagnose candida if you're getting recurring thrush or vaginal yeast. If it's in one part of your body, it's everywhere.

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I think you misunderstood me. Nystatin is a fairly toxic drug and while it's supposed to be poorly absorbed, allergies and side effects are still possible. Herxheimer symptoms are not very specific and many of the symptoms overlap Nystatin toxicity reactions. Nystatin can damage your liver if your intestines are damaged enough from celiac that you are absorbing some of it.

I don't understand why folks take Nystatin for mild candidiasis. Candida is pretty easy to kill with probiotics and safe, natural foods like coconut oil. I'm not sure people grasp how toxic antifungals are. As one of my biology teachers said, "fungi are eucaryotes and so are we". Nystatin is safe if and only if your gut is in good enough shape that none of it gets through to your bloodstream. That's too big an if for me.

Agreed that diet alone won't cut it for candida. Nature abhors a vacuum and as soon as you shift off the restrictive diet it will grow right back unless you manage to get a good population of bacteria going.

By the way, you don't need a stool test to diagnose candida if you're getting recurring thrush or vaginal yeast. If it's in one part of your body, it's everywhere.

Skylark...you are being a scaremonger here. People who take Rx anti-fungals are taking it for systemic candida infections that may have plagued them for years and just taking probiotics will not get rid of the problem. It's part of the therapy but not the sole cure.

Systemic candida can kill you and that is not a scare tactic..it's true. I can assure you that when I was suffering from it, it was hardly a "mild" case. I never got rid of the thrush I had and had a sore throat for most of a one year period. I also lost my sense of taste and had a sore tongue, which made it difficult to eat. Try that and then tell me I shouldn't have taken Nystatin. Not only did it do the trick, it did not damage my liver or cause any other side effects while taking it. Combined with the diet, I got rid of the infection and never had a problem with it again.

I don't mind if people choose a more natural route for their treatment but when you have it bad, you sometimes have to nuke the problem hard. Candida as a systemic issue is far more toxic to your system than Nystatin is.

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I don't like your insulting tone, Gemini. Someone says "I have a reaction after every dose of a drug" and anyone with a shred of common sense would say "gee, maybe it's the drug."

I'm glad to hear Nystatin helped you, but it doesn't mean it's the right medicine for everyone. People die of bacterial infections, but they also die from penicillin allergy. Like antibiotics, Nystatin is somewhat overprescribed. I just think Albion needs to talk to her doctor to make sure the reactions are still Herxheimer and not a allergic sensitization or irritation/toxicity issue.

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I don't like your insulting tone, Gemini. Someone says "I have a reaction after every dose of a drug" and anyone with a shred of common sense would say "gee, maybe it's the drug."

I'm glad to hear Nystatin helped you, but it doesn't mean it's the right medicine for everyone. People die of bacterial infections, but they also die from penicillin allergy. Like antibiotics, Nystatin is somewhat overprescribed. I just think Albion needs to talk to her doctor to make sure the reactions are still Herxheimer and not a allergic sensitization or irritation/toxicity issue.

So sorry! I did not want to start an argument. I have just been very despairing about the treatment. I was taking a sugar-loaded version of Nystatin (used for infants with thrush, it turns out!) and I feel like I didn't make any progress for the 2 months I was taking it.

My die off has been worse over the last few days with Caprylic Acid, so I am thinking I am just very sensitive to the chemicals the yeast lets go of when it dies. I am going to have my doctor do a stool culture to see what we are actually dealing with now. Did I make it worse? Is it just the same? Maybe a little better?

That brings me to my next question....what type of stool test is best for detecting candida? My celiac panel was done by a blood test and that was conclusive. I am not sure the same is true for candida.

Thanks to all of you that have been helping. I live alone with this and the isolation is tremendous and painful.

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So sorry! I did not want to start an argument. I have just been very despairing about the treatment. I was taking a sugar-loaded version of Nystatin (used for infants with thrush, it turns out!) and I feel like I didn't make any progress for the 2 months I was taking it.

My die off has been worse over the last few days with Caprylic Acid, so I am thinking I am just very sensitive to the chemicals the yeast lets go of when it dies. I am going to have my doctor do a stool culture to see what we are actually dealing with now. Did I make it worse? Is it just the same? Maybe a little better?

That brings me to my next question....what type of stool test is best for detecting candida? My celiac panel was done by a blood test and that was conclusive. I am not sure the same is true for candida.

Thanks to all of you that have been helping. I live alone with this and the isolation is tremendous and painful.

You have no need to apologize for an argument that didn't happen. I was not offended by Skylark's remark...I just think it was overreaction to a statement I made that I stand by. You are correct....the Nystatin in oral suspension will help to keep you sick if it is a true candida because it's all sugar. You may have a tough time in the beginning because of die off...that's what happened to me. It wasn't the Nystatin that made me feel bad, it was the die off. After about 2 months, things got a lot better. With continued use, I felt great.

Just make sure you go to a reputable doctor to be diagnosed and treated for it. I am not sure of specific testing but most doctors who deal with this problem will know what tests to run. Mine were done almost 20 years ago so I can't remember specifics. It takes a long time to combat a systemic candida problem, much like Celiac. It can take almost a year to eradicate it from your system.

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I have had Candidiasis twice now. I was treated two years ago, followed the diet religiously, took Nystatin for three months. My doctor told me I could go back to eating normal foods. I got sick again. I have a new provider at the clinic, she is the founder of the clinic (my other provider left).  My new provider has diagnosed me as having the Candidiasis back again as well as discovering I have Celiac Disease. She has me on the diet for both Celiac Disease and for Candidiasis. Both doctors have/had the Nystatin compounded for me so that it would not have added sugar.  This time, I took Diflucan for one month and then had to wait for my gut to get healthy enough to take Nystatin. My doctor explained that the Celiac Disease and the Candidiasis are not strangers to each other.  She told me I never should have gone back to eating sugar. Is that true? Do people who have had Candidiasis and Celiac Disease have to restrict sugar forever.  Or, is she just a real perfectionist. I mean, no sugar at all. I am also not to eat any processed food or gluten. A ton of other restrictions too. No mold, fungi, cheese, vinegar, soy, and so forth and so on.
This is an old post, probably none of you will even see this reply. I just wondered if any of you had resumed eating sugar. If so, in what amounts. Does the Candidiasis keep coming back? Please let me know what your outcomes were. Thank you.

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15 hours ago, Lisa Purcell said:

I have had Candidiasis twice now. I was treated two years ago, followed the diet religiously, took Nystatin for three months. My doctor told me I could go back to eating normal foods. I got sick again. I have a new provider at the clinic, she is the founder of the clinic (my other provider left).  My new provider has diagnosed me as having the Candidiasis back again as well as discovering I have Celiac Disease. She has me on the diet for both Celiac Disease and for Candidiasis. Both doctors have/had the Nystatin compounded for me so that it would not have added sugar.  This time, I took Diflucan for one month and then had to wait for my gut to get healthy enough to take Nystatin. My doctor explained that the Celiac Disease and the Candidiasis are not strangers to each other.  She told me I never should have gone back to eating sugar. Is that true? Do people who have had Candidiasis and Celiac Disease have to restrict sugar forever.  Or, is she just a real perfectionist. I mean, no sugar at all. I am also not to eat any processed food or gluten. A ton of other restrictions too. No mold, fungi, cheese, vinegar, soy, and so forth and so on.
This is an old post, probably none of you will even see this reply. I just wondered if any of you had resumed eating sugar. If so, in what amounts. Does the Candidiasis keep coming back? Please let me know what your outcomes were. Thank you.

Hello Lisa......I am another Lisa.  I have met a lot of people with Celiac whose names are Lisa so it has been joked around here that having the name of Lisa is a symptom of Celiac Disease.  :P

On to your question.......I have had candida and was diagnosed with Celiac in 2005.  Your doctor is correct......the two problems are not strangers to each other.  I believe that systemic candida problems can result from years of undiagnosed Celiac and the resultant leaky gut and annihilation of good gut bacteria. It's the good bacteria that keep yeast in check so it's not a stretch to think that one can be the result of the other.  I would add that I saw a real MD about this issue and not a naturopath. I had chronic thrush which would not go away until I used an anti-fungal and followed the candida diet. I initially felt fantastic after following the diet for about 2 years but then the Celiac symptoms reared their ugly heads and I got sick all over again.  No return of thrush but all those other horrible gastric problems that go hand in hand with Celiac.

I did not take Nystatin for 2 years......just long enough for all my symptoms to go away and then the diet alone to bolster healing.  I also used DiFlucan for about 2 weeks when the worst of the die off was happening. Yes, these meds are not something to use without medical supervision but systemic candida can really do a number on you too.  I don't think many people understand how badly it can mess you up.

The end result has been, between the treatment I did for candida and the diagnosis of my Celiac and following a strict gluten-free diet, that I can consume sugar without any return of symptoms.  I will say that my consumption of sugar is low and I am not snacking on sugar all day, like many people do.  I tend to crave a cookie or two in the evening, with my tea. I have taken probiotics for about 30 years now so keep up with that. I will pig out on Thanksgiving, like everyone else, and not worry about it. That means pie.  ;)

The restrictions this doctor has you on is really meant for the treatment phase. I eat cheese, vinegar and soy with no problems. I do not go overboard with sugar but enjoy some every day. I could not stay on that diet forever because I struggle to keep weight on so was strict with it for treatment only. I eased back into those forbidden foods gradually with good results. I think as you have the Celiac diagnosis also, once you get your gut back into good working order, you could try and introduce those foods when you find your gut feeling a lot better with no symptoms. Good probiotics are essential to repopulate your gut. The root cause of this problem is the Celiac so once that is taken care of, everything should heal.  Just don't tell the doc, if you think it will create an argument. I was successful in adding sugar back into my diet, in reasonable amounts.....not the amounts that mainstream Americans are eating it.  You will also find you can be satisfied with smaller amounts because you are going to feel so good after doing this, you won't want to return to feeling like crap from eating too much sugar.  The first real dessert I ate in a restaurant after about 2 years of having little to no sugar (only the sugar that happens from breaking down complex carbs) I was so buzzed, I could not sleep all night. That is what too much sugar will do!  :o

One more thing.......do not think you have to give up sugar for 2 years. You might heal faster.  I healed well enough but wanted to ensure the thrush would not return so I ditched the sugar for longer than I probably had to. Give it at least 6 months and see how you do but I am guessing that the undiagnosed Celiac had a lot to do with you relapsing.

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      Thanks for pointing all that out Gemini! I look forward to finally getting off gluten for good to see how much everything changes.  I never thought about the absorption of my synthroid with all my other issues.  I just see my primary dr. for all my thyroid, perhaps I will ask for a referral to an endo dr for further evaluation and treatment.  Thanks for all the information! 
    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed www.bing.com and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
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