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1 Month Gluten Free - Still Some Hiccups

IveGotEffinCeliac

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jackay Enthusiast
jackay
Posted

When will you find out?

When will I find out what? Candida or Celiac?

I tested gluten intolerant when I was on a rotation diet and not getting any relief. I was eating wheat every four days. I gave up gluten but wasn't made aware of cc issues by my doctor and didn't get any better. After six months of that, my doctor tested me for Celiac. Of course, all the tests were negative because I wasn't consuming gluten. I decided to not have an endoscopy because I had already been off gluten for six months.

I tested positive for candida and my doctor felt it could be controlled by over populating with good bacteria so put me on a high dose of probiotics. That did nothing. I then tried a candida diet, Candex and several different antifungals. Everytime I switch antifungals, I get die off symptoms so I feel I don't have the candida controlled yet. I still have sleep issues and muscle pain that I feel is a result of candida.

I may go back to my doctor about the candida and see if he'll prescribe Nystatin. He may want to do another test for candida first. Since I keep treating the candida with antifungals, the test may show nothing at that particular time.

My doctor doesn't think that candida is that big of an issue. He didn't seem to think that gluten was as big of an issue as it is for me either. I asked him why he didn't tell me to watch out for cc and he said because not everyone has to do that. He just wanted me cutting out foods with gluten first to see how it went. I really don't think he was aware of cc being a problem. He is learning a lot from me.

This is the first doctor that has listened to me and tried to help me get better naturally so I plan on sticking with him. Every other doctor I saw tried telling me all my symptoms were mental health issues. What those doctors don't realize is that gluten and candida were the cause of the mental and physical issues I was having.

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sandsurfgirl Collaborator
sandsurfgirl
Posted

I have been gluten-free for 1 month now. The nausea is better, but I still do not have an appetite. I am also on a 2 week lactose free trial. Doctor thinks maybe lactose intolerent. I am still not functioning well at all. I am still not able to return to work! I am trying to be patient! :(

It will get better. You are still a baby. LOL I feel so amazing now and that's all a distant memory. I'm a different person literally. At one month I was barely functioning, in bed all the time, all sorts of weird symptoms and weird phases. Hungry all the time. Not hungry at all. this bothered me. then that bothered me. then all food bothered me. then it got better.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

When will I find out what? Candida or Celiac?

I tested gluten intolerant when I was on a rotation diet and not getting any relief. I was eating wheat every four days. I gave up gluten but wasn't made aware of cc issues by my doctor and didn't get any better. After six months of that, my doctor tested me for Celiac. Of course, all the tests were negative because I wasn't consuming gluten. I decided to not have an endoscopy because I had already been off gluten for six months.

I tested positive for candida and my doctor felt it could be controlled by over populating with good bacteria so put me on a high dose of probiotics. That did nothing. I then tried a candida diet, Candex and several different antifungals. Everytime I switch antifungals, I get die off symptoms so I feel I don't have the candida controlled yet. I still have sleep issues and muscle pain that I feel is a result of candida.

I may go back to my doctor about the candida and see if he'll prescribe Nystatin. He may want to do another test for candida first. Since I keep treating the candida with antifungals, the test may show nothing at that particular time.

My doctor doesn't think that candida is that big of an issue. He didn't seem to think that gluten was as big of an issue as it is for me either. I asked him why he didn't tell me to watch out for cc and he said because not everyone has to do that. He just wanted me cutting out foods with gluten first to see how it went. I really don't think he was aware of cc being a problem. He is learning a lot from me.

This is the first doctor that has listened to me and tried to help me get better naturally so I plan on sticking with him. Every other doctor I saw tried telling me all my symptoms were mental health issues. What those doctors don't realize is that gluten and candida were the cause of the mental and physical issues I was having.

Well I hope you get the candida under control. I haven't been tested for that. Why no endoscopy? Insurance won't cover it?

jackay Enthusiast
jackay
Posted

Why no endoscopy? Insurance won't cover it?

Insurance would cover it. However, I wasn't consuming huge amounts of gluten by the time I found out it was an issue, so the endoscopy may have shown no damage. There is no way I can go back to eating the amount of gluten needed for the endoscopy to show villi damage. I get reactions from cross contamination so would get too sick to go through with that for a month or longer. My physical and mental pain was so severe before I cut out cross contamination that I wanted to die. I would rather not know than go through that pain again.

I can tell by my BMs that my food is now being processed (accept if I run into cc) so feel if I did have villi damage that they are repairing themselves over time:)

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

Insurance would cover it. However, I wasn't consuming huge amounts of gluten by the time I found out it was an issue, so the endoscopy may have shown no damage. There is no way I can go back to eating the amount of gluten needed for the endoscopy to show villi damage. I get reactions from cross contamination so would get too sick to go through with that for a month or longer. My physical and mental pain was so severe before I cut out cross contamination that I wanted to die. I would rather not know than go through that pain again.

I can tell by my BMs that my food is now being processed (accept if I run into cc) so feel if I did have villi damage that they are repairing themselves over time:)

You know, my GI wasn't really all that specific when he went over my villi repopulating. I just suppose I figured that since i have virtually no villi left at all ( in the picture of the opening it's perfectly smooth with zero villi)that it would be at least a year or so before anything began to heal in my small intestine.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

It will get better. You are still a baby. LOL I feel so amazing now and that's all a distant memory. I'm a different person literally. At one month I was barely functioning, in bed all the time, all sorts of weird symptoms and weird phases. Hungry all the time. Not hungry at all. this bothered me. then that bothered me. then all food bothered me. then it got better.

I like the baby comment. Thank you for following this thread, and your positive input. This site rocks!!!!

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

will be 5 days.

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sandsurfgirl Collaborator
sandsurfgirl
Posted

I like the baby comment. Thank you for following this thread, and your positive input. This site rocks!!!!

LOL! The giving up stuff is only for the healing phase so your body can heal faster. It's not permanent, well not always anyway. I can eat dairy now as long as I don't go nuts. I can eat nightshades, tapioca and xanthan gum and all were bothering me a lot. I can't eat soy and may never be able to. It feels like I'm being stabbed when I eat soy. It's horrible.

There is a great bread mix that you can buy online from that site we can't mention in bulk and super easy to make. Gluten Free Pantry Basic White Bread. Makes a big loaf, tastes so "normal" not gritty and stays together for a sandwich. It's only $4.50 for a big loaf. Not the cheapest but way cheaper than the premade stuff.

Do you eat from a restaurant in the casino for free or who is providing the food? Just wondering if you can talk to the cooks or someone about what other things you can get to vary your diet. Can you bring partial lunches to supplement what you are getting at work?

The starving gnawing hunger is normal in the beginning. I felt like i could chew on the cupboards if I couldn't get to food fast enough. Then my appetite was way low for awhile. Then it was normal and still is.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

LOL! The giving up stuff is only for the healing phase so your body can heal faster. It's not permanent, well not always anyway. I can eat dairy now as long as I don't go nuts. I can eat nightshades, tapioca and xanthan gum and all were bothering me a lot. I can't eat soy and may never be able to. It feels like I'm being stabbed when I eat soy. It's horrible.

There is a great bread mix that you can buy online from that site we can't mention in bulk and super easy to make. Gluten Free Pantry Basic White Bread. Makes a big loaf, tastes so "normal" not gritty and stays together for a sandwich. It's only $4.50 for a big loaf. Not the cheapest but way cheaper than the premade stuff.

Do you eat from a restaurant in the casino for free or who is providing the food? Just wondering if you can talk to the cooks or someone about what other things you can get to vary your diet. Can you bring partial lunches to supplement what you are getting at work?

The starving gnawing hunger is normal in the beginning. I felt like i could chew on the cupboards if I couldn't get to food fast enough. Then my appetite was way low for awhile. Then it was normal and still is.

I wonder where I'd look to find this bread mix from the site we can't mention.

Yes, I eat at a restaurant in the casino. As part of my contract, I do eat free. There's not a whole lot of selection for me. At least not a lot that I know for sure doesn't contain gluten, or that has low risk of cross contamination.

Marz Enthusiast
Marz
Posted

I wonder where I'd look to find this bread mix from the site we can't mention.

Yes, I eat at a restaurant in the casino. As part of my contract, I do eat free. There's not a whole lot of selection for me. At least not a lot that I know for sure doesn't contain gluten, or that has low risk of cross contamination.

I bring a plain/safe "meat" with me to work, and then heat it up and use my work-supplied cafetaria to add rice and a salad to it. You could ask them to cook up some plain rice/potatos/salad and add your own safe sauce/meat? Otherwise ask them if you can use the kitchen? 0.o You could use their ingredients, but working in a non-gluten-free kitchen might be tricky. Not sure how much lee-way you have at the restaurant.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I wonder where I'd look to find this bread mix from the site we can't mention.

Yes, I eat at a restaurant in the casino. As part of my contract, I do eat free. There's not a whole lot of selection for me. At least not a lot that I know for sure doesn't contain gluten, or that has low risk of cross contamination.

Have you talked to the kitchen manager? there may be things you don't realize are gluten free or they might be able to help you figure something out.

Yes order the Gluten Free Pantry mix. And their pizza crust/french bread mix makes the best pizza!

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

I bring a plain/safe "meat" with me to work, and then heat it up and use my work-supplied cafetaria to add rice and a salad to it. You could ask them to cook up some plain rice/potatos/salad and add your own safe sauce/meat? Otherwise ask them if you can use the kitchen? 0.o You could use their ingredients, but working in a non-gluten-free kitchen might be tricky. Not sure how much lee-way you have at the restaurant.

I have all the leeway I could ask for; I'm just extremely active while I'm at work. I run the table games department, and it's all I can do to keep up with normal day to day operations. That's probably because I'm effin exhausted all the time. I'll just stick with the cottage cheese, and sliced peaches. I cut out the plain scrambled eggs, because I'm not entirely sure about cross contamination. So cottage cheese, sliced peaches, and whatever other fresh fruit happens to be on hand. If I'm somehow getting gluten from eating these simple things at work, then the Universe is completely dysfunctional.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

Have you talked to the kitchen manager? there may be things you don't realize are gluten free or they might be able to help you figure something out.

Yes order the Gluten Free Pantry mix. And their pizza crust/french bread mix makes the best pizza!

I'm pretty comfortable with what I eat at work. It's gluten free, and I don't have to make any special requests in order to eat a couple times a day.

We have been buying pizza crusts from a local gluten-free bakery out here. Amazing pizza.

anabananakins Explorer
anabananakins
Posted

Nine months later I still have brain fog and short term memory issues. I've been trying to rid myself of candida for quite some time with natural supplements. I definitely need to see my doctor soon about trying Nystatin.

Can anyone help me out with what a normal dosage is. Is generic Nystatin effective? Is there a chance the generic would contain gluten?

Sorry, I missed this before. I take 2 tablets in the morning and 2 at night. They are 500,000 I.U. per tablet. The brand is Nilstat and it says "nystatin tablets" (I'm in australia) so I think nystatin is the drug and not the brand - if the generic said that it was nystatin tablets it should be fine.

They seem to be working really well. I've lost interest in sugary foods, which is very strange for me.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

I must have injested gluten on Friday. Yesterday and today I feel like runny poo. I'm beginning to develop a raging contempt for this disease.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

I sure as heck hope I start feeling better soon.

IveGotEffinCeliac Apprentice
IveGotEffinCeliac
Posted
  • Author

Vitamin B 12 shots are here. Can't wait to see if there's any improvement.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I must have injested gluten on Friday. Yesterday and today I feel like runny poo. I'm beginning to develop a raging contempt for this disease.

We all understand. Got glutened twice recently from trace gluten and it sucks so bad.

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