Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Nystatin For Yeast?


Rileysmom

Recommended Posts

Rileysmom Newbie

Hi everyone,

I'm new here and a very good friend of mine (shayesmom) said I should join because you're a nice bunch of folks facing some of the same problems we are facing. A brief tell all about us...I'm the mother of an ASD kid with severe gut issues. Riley is gluten-free CF and Egg Free. We recently added in some soy and corn, not often but in moderation, his IgG said it was low on his reactions but I still limit it, although adding corn back in as added a bit of variety to our diet. Riley's DAN! doctor put him on Nystatin for 20 days on and 7 days off then 20 days back on, then we get to Chelate. We've done EVERYTHING all natural up until the Nystatin. My question is, is it natural to have a stimming and hyperactive reaction to the Nystatin or is this the yeast die off that is causing this behavior? Within an hour of giving it too him (3 times daily, 1 tsp) he is freaking out. Jumping stimming growling tapping everything in sight with his fingers. Should I switch to something else like Candix or try something else? We have a very limited budget right now so I'm sort of trapped by what Medicaid will cover. Nystatin is covered but I hate giving it to him because I'd like to keep things as natural as possible for him. Plus, I'm not sure how much more of this crazy stuff he or I can take!!!

Thank you,

Rileysmom


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AliB Enthusiast

It could well be the Nystatin that is triggering the response - Candida can be anywhere in the body and any threat to its 'comfortable existence' may well throw out reactions.

I would not be at all surprised if corn and soy are problematic - those who have problems with gluten foods often have difficulty with carbohydrates in general - it is the carbs and sugars that feed the Candida and other pathogens.

It is estimated that over 70% of the 'Western' population have health issues directly linked to Candida overgrowth. Gut dysbiosis and a destruction of the beneficial bacteria that protect and support the gut is a huge factor in the infestations. Many things can trigger it - I suspect that with things like ASD it just depends at what point a child has been 'hit' with a trigger, as to whether ASD will develop. Some may develop Candida infestations at a later stage, after the crucial point has passed and will not develop ASD, although their manifestation may be different health issues.

Have you tried Riley on the Specific Carbohydrate diet (SCD)? It is having great success with children with ASD (as well as both adults and kids with all sorts of other health issues, whether physical or mental). There is a site dedicated to it specifically for children with Autistic Spectrum - 'Pecanbread'. It is full of loads of interesting info and experiences, the diet specifics and lots of recipes.

The thing is though, that although the Nystatin may give temporary relief, unless you change its environment, namely the diet, the Candida will just come back again. Nystatin and other anti-fungals can knock it back, but if we carry on 'feeding' it, it will just regrow. Just as important is the need to replenish the good gut flora and get the digestive tract back into a symbiotic state rather than the dysbiotic one that contributes to the Candida infestation.

That is why the SCD works, because it removes the foods that feed the pathogens and encourages re-establishment of the proper symbiosis through probiotic supplementation. Many who have followed the diet have found that the ASD can either radically diminish, or in some cases even, if caught at an early enough stage, allow the child to live a normal life.

Another advantage of the SCD is that it is based on food - all it requires is the selection of specific good wholesome foods and nothing processed. Good home-made 24-hour yogurt will supply the probiotics. Some like to add in some extra probiotics, but that would be the only 'medication' needing to be purchased.

The book 'Gut and Psychology Syndrome' by Dr. Natasha Campbell-McBride is a very good resource if you can get hold of it. Natasha changed her sons' Autism with the help of the diet and other techniques to the extent that he leads a pretty much ASD-free life, and is in mainstream school.

Below is a link to an article about her work.

Open Original Shared Link

It comes up in very small font but you can enlarge it, and if you choose to subscribe to scribd you can download the article, which I have done as it is handy to keep.

Regards, Ali.

RiceGuy Collaborator

What works for many (and what worked for me) is caprylic acid capsules. It is a naturally occurring fatty acid, and does not cause side effects like drugs so often do. It is also relatively cheap. One such product of which I'm aware is Open Original Shared Link.

Since you didn't mention avoiding certain foods, I'll just point out that as AliB stated, sugars should be avoided. It is also helpful to avoid all yeast containing products (like yeast breads), vinegars (such as ketchup), and fruits. This is what I had to do.

As for complex carbs, my personal experience jives perfectly with what I've read, which is that complex carbs are generally much less of a problem, since yeasts don't have the ability to break down complex carbs fast enough to really thrive. I didn't have to cut carbs at all, and I was eating tons of the stuff. I think one factor is the state of the digestive system. If digestive enzymes are breaking down the carbs, and the intestines aren't able to transfer the resulting molecules into the bloodstream, then they can become food for yeast. However, I'm sure you are aware of how your child generally does with carbs. For some people, carbs from grains seem to be more troublesome than other types, and if that is the case for your child, it obviously needs to be taken into account.

If you find the need to sweeten some foods, Open Original Shared Link is my recommendation, as it is natural, has zero sugars, zero carbs, and is zero on the glycemic index. Therefore it won't feed yeast, or any other nasties.

I eventually was able to slowly add fruits back into my diet, but it took several months, even though I had been felling much better since the second month or so. This was even before I discovered the problems with gluten.

I hope your child feels better soon, and by all means post on the progress!

Gemini Experienced
Hi everyone,

I'm new here and a very good friend of mine (shayesmom) said I should join because you're a nice bunch of folks facing some of the same problems we are facing. A brief tell all about us...I'm the mother of an ASD kid with severe gut issues. Riley is gluten-free CF and Egg Free. We recently added in some soy and corn, not often but in moderation, his IgG said it was low on his reactions but I still limit it, although adding corn back in as added a bit of variety to our diet. Riley's DAN! doctor put him on Nystatin for 20 days on and 7 days off then 20 days back on, then we get to Chelate. We've done EVERYTHING all natural up until the Nystatin. My question is, is it natural to have a stimming and hyperactive reaction to the Nystatin or is this the yeast die off that is causing this behavior? Within an hour of giving it too him (3 times daily, 1 tsp) he is freaking out. Jumping stimming growling tapping everything in sight with his fingers. Should I switch to something else like Candix or try something else? We have a very limited budget right now so I'm sort of trapped by what Medicaid will cover. Nystatin is covered but I hate giving it to him because I'd like to keep things as natural as possible for him. Plus, I'm not sure how much more of this crazy stuff he or I can take!!!

Thank you,

Rileysmom

I was on Nystatin and the Candida diet for a couple of years prior to diagnosis of celiac disease and it worked extremely well for me. A couple of things of note.....you have to take Nystatin for a long time to kill off all problematic yeast overgrowth so 20 days will not do it. There will be a period when the yeast goes thru

"die-off" when the person treated will feel horrible and the yeast symptoms will actually get worse. I can see where this may affect behavior in children, big time.

Things may calm down once past this period but I would be a bit hesitant to continue with Nystatin if this behavior continued after a dosage. The advice of using caprylic acid was good as I have heard this works very well in killing off Candida. You may want to give that a try. The hardest part of all is that it is extremely important to eradicate ALL sugar from the diet when going through this treatment or the supplements will not work the way they were intended. That means limiting carb intake also....hard to do in children. You don't have to eliminate them but whole grains only and my number used was 200 grams of carbs per day....no more, and that worked really well for me.

Good luck to you and I hope Riley feels better soon!

Rileysmom Newbie

Thank you guys so much for answering my questions. It is almost impossible to eliminate the sugars from Rileys diet!!! Ughhhh it's such a battle.

So we just went on our 7 days of no Nystatin, then on the 27th we go back to another 20 days. I'm going to call his DAN doctor and ask if there is something else besides Nystatin we can try for him. Per Gemini's response to the 20 day thing...should he be on longer than a total of 40 days Nystatin before we Chelate? Shayesmom and I were talking about this and she said that the gut really isn't going to heal properly no matter what I do until the metals are out of his system. I'm thinking maybe we should go ahead with the next 20 days treating yeast then Chelate, then go back on a yeast treatment again.

This is so confusing and hard to manage but I'm bound and determended to make my baby better. This is a bit off topic but have any of you gone threw any sort of chelation therapy? I was wondering because when we start him on this, I'm assuming I can't use my Stainless Steel frying pan. We've switched everything else out to Anchor Hawking glass wear and ditched everything with a coating or aluminum. I will never go back to using that coated stuff again YUK!!! I just yelled at my SIL for buying that crap. I told her she is poisoning her kids by using that stuff...of course she told me to blow out my rear end but...hey I tried <_<

Thank you again everyone, you all are a wonderful resource to have....

Rileysmom

AliB Enthusiast

Rachel--24 is quite the expert on chelation if you PM her.

I am undecided about that - I think there are herbs and elements that we can use to help the body rid itself of unwanted stuff, but I also feel the the most important thing is to get the body well, boost the immune system, cleanse the liver and well, just give the body the tools it needs to do its own housekeeping.

Our bodies are very capable of sorting themselves out as long as we are consuming foods that support it, rather than foods that deplete it. Sugar is a terrible drain on the body and the immune system. Whilst whole natural foods, and particularly raw ones will add to our nutrient store, sugar and other processed foods actually deplete it.

There are sweet goodies on the SCD - made with raw honey which is full of nutrients and enzymes - Pecanbread website has lots of recipes that are suitable for kids. I know how difficult it can be though. My youngest grandson has ASD and he is terrible with food - so picky, but then he has been weaned on chocolate biscuits and cakes. The trick is to not let kids have the stuff to start with. They don't miss what they've never had. I am just as much to blame for that, buying them goodies as treats - completely oblivious to the fact that it was doing them such harm.......

The other day I made him and his brother some strawberry yogurt icecream - live plain greek yogurt, sweet strawberries, honey and some plain choc chips (he's dairy intolerant). He scoffed it down. I made some more last night - something was different, the strawberries weren't very sweet and I think I put less honey in it, and he took one mouthful and wouldn't eat any more! But I will persevere. I just hope that hasn't put him off ever eating it again.......

Today I gave him a honey sandwich. Without thinking I made it with seeded bread (he's still on gluten). He sat there and inspected it for a few minutes. I did manage to persuade him to have a mouthful but that was it. Unless it is white pap he won't eat it. Arrrrgh! But if he had never had the white pap, he wouldn't know any different. We do make rods for our own backs sometimes.

Anyway, back to the immune system thing. There have been some horrible viruses going around over here in the UK over the last few weeks - the hospitals are full.

Amazingly for me - as I would always be hit with everything going - with being on the SCD, and the fact that I have really been giving my body plenty of tools in the form of green smoothies full of nutrients and enzymes and supplementing with generous vitamin C, zinc, and Echinacea along with my normal multivit, I have so far managed to fight them off. I have had a few days where I have been very tired, but unlike my family around me who are coughing an spluttering, I am fine.

Now how on earth can I persuade Ashley to try a green smoothie?? I have tried him with just fresh juice but he wouldn't touch that either - I will have to filter out every bit of remaining fiber. He sat with me and watched a baby on Youtube scoffing down green smoothie, and was laughing his head off at the green mustache, but would he try it himself? Like heck he would....

That Mom on Youtube had the right idea - start 'em young........

  • 3 weeks later...
Rileysmom Newbie
Rachel--24 is quite the expert on chelation if you PM her.

I am undecided about that - I think there are herbs and elements that we can use to help the body rid itself of unwanted stuff, but I also feel the the most important thing is to get the body well, boost the immune system, cleanse the liver and well, just give the body the tools it needs to do its own housekeeping.

Our bodies are very capable of sorting themselves out as long as we are consuming foods that support it, rather than foods that deplete it. Sugar is a terrible drain on the body and the immune system. Whilst whole natural foods, and particularly raw ones will add to our nutrient store, sugar and other processed foods actually deplete it.

There are sweet goodies on the SCD - made with raw honey which is full of nutrients and enzymes - Pecanbread website has lots of recipes that are suitable for kids. I know how difficult it can be though. My youngest grandson has ASD and he is terrible with food - so picky, but then he has been weaned on chocolate biscuits and cakes. The trick is to not let kids have the stuff to start with. They don't miss what they've never had. I am just as much to blame for that, buying them goodies as treats - completely oblivious to the fact that it was doing them such harm.......

The other day I made him and his brother some strawberry yogurt icecream - live plain greek yogurt, sweet strawberries, honey and some plain choc chips (he's dairy intolerant). He scoffed it down. I made some more last night - something was different, the strawberries weren't very sweet and I think I put less honey in it, and he took one mouthful and wouldn't eat any more! But I will persevere. I just hope that hasn't put him off ever eating it again.......

Today I gave him a honey sandwich. Without thinking I made it with seeded bread (he's still on gluten). He sat there and inspected it for a few minutes. I did manage to persuade him to have a mouthful but that was it. Unless it is white pap he won't eat it. Arrrrgh! But if he had never had the white pap, he wouldn't know any different. We do make rods for our own backs sometimes.

Anyway, back to the immune system thing. There have been some horrible viruses going around over here in the UK over the last few weeks - the hospitals are full.

Amazingly for me - as I would always be hit with everything going - with being on the SCD, and the fact that I have really been giving my body plenty of tools in the form of green smoothies full of nutrients and enzymes and supplementing with generous vitamin C, zinc, and Echinacea along with my normal multivit, I have so far managed to fight them off. I have had a few days where I have been very tired, but unlike my family around me who are coughing an spluttering, I am fine.

Now how on earth can I persuade Ashley to try a green smoothie?? I have tried him with just fresh juice but he wouldn't touch that either - I will have to filter out every bit of remaining fiber. He sat with me and watched a baby on Youtube scoffing down green smoothie, and was laughing his head off at the green mustache, but would he try it himself? Like heck he would....

That Mom on Youtube had the right idea - start 'em young........

Oh I wish I could use that greek yogurt recipe of yours!!! Riley is casein free though. Sorry it took so long for me to get back to you. Apparently, if you don't pay your bill, they shut your computer off!!! Who knew??lol.

I took Riley off the Nystatin. I called his DAN doctor today and made an appointment for him on the 15th. I just have this feeling that something just isn't right and he is so "flappy" and doing a TON of stimming. His little heart is just racing. I really want to do this naturally but find it unaffordable right now. Our insurance only covers "chemicals"...go figure!

You could always tell Ashley that the green smoothie is what all the superhero's are drinking these days. I don't have any other advice for you because the last time I got Riley to actually enjoy a real veggie was when he was in his high chair, strapped in and couldn't run away. Strangely enough though, he started eating green beans again. Maybe I could get Riley to try one of your green smoothies!!

I will say that Riley shocked me tonight...he yelled at me and said ALL DONE! This is a child that's been completely non verbal for over 3 yrs. We're making progress!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,829
    • Most Online (within 30 mins)
      7,748

    Mellz28
    Newest Member
    Mellz28
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
    • Scott Adams
      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
    • Scott Adams
      Based on your results, it seems unlikely that you have celiac disease. A negative endoscopy and the absence of HLA-DQ2/DQ8 genes (the primary genetic markers for celiac) strongly suggest you do not have the condition. However, the elevated TTG-IgA (22) could indicate a temporary immune response or another issue, such as a different autoimmune disorder, intestinal infection, or even a lab anomaly. The presence of DQA1*05 alone is not diagnostic for celiac. Meeting with an allergist and GI specialist is a good next step to explore other potential causes for the high antibodies, such as non-celiac gluten sensitivity or other immune-related conditions. Keep a detailed food and symptom diary to help guide further testing and discussions with your doctors. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Captain173
      I had celiac panel done back in October, only ttg iga came back high  (22 with positive being over 3). Endoscopy done in January, it was  negative. Genetic test done after endoscopy, negative for both hla dq2 & dq8. Did show positive for dqa1*05.  Scheduled to meet with an allergist next week. Not scheduled to meet with GI specialist till after allergist. Confused if I have celiac or what caused high the antibodies originally if I do not.
×
×
  • Create New...