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Celiac, Candida And Nystatin

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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.)

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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Posted (edited)

I took Nystatin powder 1/2 tsp twice a day mixed with water. 5 days later I was nearly dead from dehydration, malabsorption from GI damage. It stripped 3 layers of my intestinal tract. Even the villai were damaged. That was in 1988. I was very fortunate that the villae grew back (5 years at 1mm per year).

I survived on Ensure Plus and Gatorade for two years. It was ten years before I could eat normally again and actually absorb food.

Do your homework. Be careful. I’ve suffered many years because of the malabsorption and malnutrition for ten years. Be smart; not extreme.

 

Edited by Coachamya
Misspelled word

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated.  I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room. Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen.  I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.
    • Nice!  Thanks so much for sharing.  😊
    • "I've been there and still might have celiac disease." If you really DID have celiac disease? You still have it, and always will. There is no evidence that the underlying problems (autoimmune failure, leaky gut, etc.) ever can heal themselves, or be healed, beyond the random miracle cure at Lourdes.  There is, as best I've been able to find, absolutely no one out there who can say why sometimes an infant will be diagnosed with celiac, which then "goes away" for thirty or forty years, and then comes back with a vengeance. Indicating the underlying problems were there all along--and may have been causing all sorts of damage for all the years.  Think carefully about that. Celiac is like radiation poisoning: Every exposure adds up, over your whole lifetime, and pushes your autoimmune system further out of control. Even if it seems fine at the time.
    • Wow. My older daughter, who is eating gluten-free these days, came to celebrate Father's Day last Sunday. We cooked our traditional pancake breakfast and she brought with her Walmart's Great Value Gluten-free Pancake and Waffle Mix. It was delicious! So happy to see (and taste) so much flavor improvement over the last 10 years for the gluten-free crowd! Here is a link to this mix:
      http://bit.ly/2tnQrzB   Cheers,
      Travis Hiland  
    • Thanks for looking and responding. Hopefully can get in to see a gastroenterologist soon. Will have to wait for regular dr to come back first. Thanks again! 
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