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Help! Please!


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#61 CeliacFashionista

 
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Posted 27 April 2012 - 02:09 PM

Diflucan is used for vaginal yeast infections. Nystatin is used for oral yeast infections. Do you have visible yeast growing in these areas?? If so, You may have to take that for an extended period for it to work. Talk to your medical doctor about this, please.

Did an alternative doctor tell you that you have
"Systemic candida"? :rolleyes:

You would be very ill and in the hospital if you had that, your organs and blood would be filled with an invasive yeast.

I am trying to help you because I was in your shoes and the alternative approach did not help one bit. They told me I had "systemic yeast" too--and when I started reading the medical journal articles, I found there was no such thing, except in the extreme cases where people are hospitalized.

You may have low or little good bacteria in your gut, but dousing it with MILK is not helping you. I know, I tried all that too.

PLEASE...Read this, from Dr, Weil's site, since no medical journal offers anything about systemic candidiasis:

"This is a scientifically unfounded notion that Candida albicans, a species of yeast that normally lives harmlessly in the gastrointestinal tract and vagina, can routinely become a serious systemic infection responsible for a host of ailments. Systemic candidiasis is said to cause fatigue, depression, anxiety, skin eruptions, and immune system malfunction.

In fact, Candida albicans, sometimes can get out of control, causing vaginal infections, intestinal upsets, or infections of the mouth and throat (called thrush). In most cases, this is the result of prolonged or frequent use of antibiotics, which can wipe out the "friendly" bacteria that normally keep yeast in check. Other drugs that can wipe out intestinal flora or encourage overgrowth of yeast are steroids and estrogen, either in the form of birth control pills or hormone replacement therapy.

A book called "The Yeast Connection" by Dr. William Crook popularized the hypothesis that Candida is a major pathogen that can weaken the immune system, allowing other infections to occur. Dr. Crook also contends that toxins produced by Candida could contribute to the development of multiple sclerosis, rheumatoid arthritis and other autoimmune disorders.

Diagnoses of systemic candidiasis usually have no scientific basis, and most of the recommended treatments for it waste time and money. Anyone with yeast growing in the blood or vital organs would be critically ill in an intensive care unit.

Despite this medical reality, systemic candidiasis remains a popular diagnosis in some segments of the alternative medicine community. My belief is that its persistence is an example of our fears of foreign invaders; it satisfies a need to blame our maladies on an external cause.

Most of the treatments used for this "disease" are harmless except for drugs like ketoconazole (Nizoral) and fluconazole (Diflucan) which can be toxic to the liver and should not be used except on the advice of an infectious disease specialist. A study reported a few years ago in the New England Journal of Medicine found that the more commonly used drug nystatin (Mycostatin) was no more effective than a placebo in treating people who thought they had systemic candidiasis.

My colleague and naturopathic physician, Judy Hutt, NMD, points out that although systemic candidiasis is an unfounded diagnosis, one should not ignore chronic gas and bloating and other refractory gastrointestinal complaints that develop after taking large doses of antibiotics or steroids. In addition to oral or topical antifungal treatments, other natural therapeutic options include taking a good acidophilus product (such as Lactobacillus GG) to help restore normal gut flora, cutting back on refined sugars, avoiding dairy products, and eating one clove of garlic per day, preferably raw.

Here's what's happening, but you can do with this information what you wish. We're just trying to help you.

Dairy is making things worse right now.


Culturelle contains Lactobacillus GG--which is the strain of good bacteria that survives the acidic gut. Just give it a chance. It takes a month or so for the bad guys to be eradicated.

Capryllic acid and garlic are natural yeast fighters.

Offered with all good thoughts,
IH

I have Visible Vaginal Discharge. My doc said it was a yeast infection and gave me the diflucan. I just bought Dr. Ohhira's probiotics and hopefully that will help. I have not had any dairy in two weeks!!!!And I already eat 2 cloves of garlic a day! I've been on many doses of antibiotics and steriods before my doctors knew I had celiac. That was the only thing that would treat the various symptoms I was having(Severe swelling, yeast infections, BV). I believe systematic candida is real and Alternative Medicine has helped me more than anything. Western medicine is partially why I got this sick(see their treatments above). I do not believe anything any Western Medical Doctor says because they are worried about their pockets more than my health. They have failed me for 22 years. I do my own research and go to them for testing to back up my thoughts.
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#62 IrishHeart

 
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Posted 27 April 2012 - 02:23 PM

and how is that working out for you? Not well, hon, cause you are still suffering symptoms.


I offered my best thoughts, based on my own experiences for 45 years with
"Alternative Docs"
"Holistic Docs"
"Integrative Docs"
and "Western Med" docs.

None of them get it right.

If anything, other CELIACS know more.
You asked: Please, help!
and we did.

I am telling you that IMHO, the path you are on is NOT working.

but you do not want to hear anything we say. :(

Sorry I could not be of more help. I walked in your shoes and I am trying so hard to help you.

I want you to feel better!

Do what you think is best, of course!
It's your body. And you know what's best.

I wish you well.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#63 CeliacFashionista

 
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Posted 27 April 2012 - 03:38 PM

I am very grateful for the help but the things your telling me to do I am already doing. My issue is the things that worked for my body are not working for my DH. Kefir was great for my body but I cut it out to go low iodine for my skin. I tried Cultrelle and it did not help me. I took the entire pack and saw no change. I saw a difference in a week w/ kefir. On top of that I still have this vaginal discharge. And my hair fell out when I stop the kefir. I am not saying I do not want to take your advice but I HAVE tried everything your telling me and I am worse off. My question is how did I fix my skin without going backward with my healing. I am loosing SOOOO much weight with all these restrictions and I am already underweight. I changed my multi to one without iodine, threw out all soy and soy products, I started low sals, but now I FEEL worse trying to heal my skin. It's driving me insane. WHAT CAN I EAT. The rice kefir I had to throw out because I only have jasmine rice and that is high in sals, I can't eat ANY seasonings. I AM STARVING! And I feel worse and my skin still isn't completley clear. How long do I have to stay on this diet? I too believe the best help is from other celiacs which is why I came to you guys to ask these questions. Please don't take my frustration the wrong way I just want to feel better and clear my skin at the SAME time. I greatly appreciate all the help you are giving but I need some answers because I if I continue to cut things out with out a replacements I am not going to be able to stay on this diet very long.
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#64 pricklypear1971

 
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Posted 27 April 2012 - 03:47 PM

What did you do last night that made your rash better? You said it was better today.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#65 CeliacFashionista

 
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Posted 27 April 2012 - 04:04 PM

I don't know...but the seem to be healing. I've did alot of things. I took niacin and zinc. I've been drinking acv/lemon/baking soda water, I cut down on the sals and iodine. but I haven't really been strict about it. It's weird because sometimes I have reactions and sometimes I do not.Last nite I ate a whole box of enjoy life cookies with little reaction. However when I drank naked berries blend I had a severe reaction. I am trying to cure my yeast problem with garlic/ the acv drink and cure my DH with low sals and low iodine but I so confused I don't even know what is helping anymore and I afraid to stop anything.
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#66 IrishHeart

 
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Posted 27 April 2012 - 04:07 PM

Honey,

Anytime we change our diets, our bodies REACT. Die off, sloughing, and detox occurs. It's a messy process . Hair falling out could be your thyroid. OR it could be what I had--"anorexia " from celiac. I was FAT. Then I was so emaciated, they called me anorexic. What hogwash. I was trying to eat and trying ALL the things you are.

None of it worked. I lost everything I choked down-- both ways.

I felt like total SH*T for 3 years and even after I went gluten-free---for 10 MONTHS !!

You feel awful, but you are not going to die. I promise!

You do not hear this part: it takes more than a month to heal a damaged gut from celiac. It takes more than ONE packet of Culturelle to be effective. It takes months to heal.
Sorry.

You have to get the steroids out of your system.

You may be overdoing things. Raw kefir made me vomit, feel weak and sweaty and have diarrhea so bad that my hubs had to prop me up on the toilet so I could pass it out and hold a cold cloth on the back of my neck so I would not pass out.

IT is TOO much for your GI tract.

I am trying to get you to see that your gut is so damaged that... THE gut IS WHAT YOU NEED TO HEAL FIRST. Then, the probiotics and yogurt and everything else will be beneficial.


I'm suggesting: start anew. Easy does it.

Water. Lots of water.
probiotics.
No dairy.
Eat chicken, meats, fish
Vegs (but no canned toms)
egg whites
No fruits, except peeled apple, pear and mango
nuts and seeds (except what is listed above).
white rice is okay.


Just try it for 2 weeks.
I hope you feel better soon.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#67 CeliacFashionista

 
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Posted 27 April 2012 - 04:13 PM

Also I saw that flaxseed oil is high in sals but I do not have any reaction to it and I take it three times a day. Should I stop if it does not cause itching or new lesions? Can this stop the from healing? Also if I still eat sals but limit my intake is that enough? I'm sorry I am asking so many questions I just need to get this under control so I can have my sanity and my life back! You guys are amazing to be able to do this! Its driving me bonkers!
  • 0

#68 pricklypear1971

 
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Posted 27 April 2012 - 04:17 PM

I don't know...but the seem to be healing. I've did alot of things. I took niacin and zinc. I've been drinking acv/lemon/baking soda water, I cut down on the sals and iodine. but I haven't really been strict about it. It's weird because sometimes I have reactions and sometimes I do not.Last nite I ate a whole box of enjoy life cookies with little reaction. However when I drank naked berries blend I had a severe reaction. I am trying to cure my yeast problem with garlic/ the acv drink and cure my DH with low sals and low iodine but I so confused I don't even know what is helping anymore and I afraid to stop anything.


Naked berry blend - high salicylate, high sugar
Cookies - without knowing what was in it I can't say but I'm betting it was low-ish in sals, probably high in sugar

If those two are your tests then I'd say you have a sals issue. The sugar levels in both of those are not conducive to starving yeast. It feeds on sugar (if you're worried about yeast).

If you are severely low on the two vitamins the zinc and niacin could help.

What is an acv drink?

DH flares and recedes - that's just it's nature. I'm glad you're feeling better. You may be in a healing phase, the goal is to not trip it again.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#69 squirmingitch

 
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Posted 27 April 2012 - 04:22 PM

I don't know...but the seem to be healing. I've did alot of things. I took niacin and zinc. I've been drinking acv/lemon/baking soda water, I cut down on the sals and iodine. but I haven't really been strict about it. It's weird because sometimes I have reactions and sometimes I do not.Last nite I ate a whole box of enjoy life cookies with little reaction. However when I drank naked berries blend I had a severe reaction. I am trying to cure my yeast problem with garlic/ the acv drink and cure my DH with low sals and low iodine but I so confused I don't even know what is helping anymore and I afraid to stop anything.


I think we've all MOL been there, done that. I hear your frustration. I feel you fright & confusion & even panic. Been there, done that. I soooo sympathize. And I wish you weren't going through all this. Great big (((HUGS)))!!!!!

One question before I forget --- can you stand "stinky cheeses"? You know, like Stilton & the like? I can't hack them personally. But you may be able to eat those. They are tolerated better than regular dairy & the way I understand it; something about them makes them low iodine. So that may be an option for you. And we know you could use the fat.

I also am skinny. 97/98 lbs. You could blow me away in a good breeze. I always have been thin but for 32 years I weighed 103 & then when this all began to hit me about 8 yrs. ago I suddenly lost 5 lbs. & even now, gluten-free, I have not regained those lbs. yet. Eat cashew butter, hazelnut butter, sunflower seed butter on brown rice cakes or whatever else like golden delicious apples. Use safflower oil in/on everything you can think to put it on. Iceburg lettuce & leek salad with safflower oil & lime for dressing. Like Dani said, chicken wings. You need lots of protein. I have an entire box of nuts sitting here. I eat lots of nuts --- pecans, cashews, hazelnuts, walnuts, sunflower seeds, pumpkin seeds -- all unsalted of course -- you can add non iodized salt yourself if you like. I made a great, fast snack the other night. Golden delicious apple peeled & cut up & put in microwave dish. Sprinkle with cinnamon & drizzle with safflower oil & I sprinkled a little brown sugar on but you may wish to avoid sugar with the candida. Nuke it for a minute. YUM!

How long have you been gluten free? You probably said but I forgot.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#70 pricklypear1971

 
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Posted 27 April 2012 - 04:22 PM

Also I saw that flaxseed oil is high in sals but I do not have any reaction to it and I take it three times a day. Should I stop if it does not cause itching or new lesions? Can this stop the from healing? Also if I still eat sals but limit my intake is that enough? I'm sorry I am asking so many questions I just need to get this under control so I can have my sanity and my life back! You guys are amazing to be able to do this! Its driving me bonkers!


Sals are cumulative. So you must pick what matters to you and balance it. You probably won't see an immediate reaction from many things - berries may be a horrible trigger for you but flax may not be. However, the sals build up...so you may react when you hit your threshold of sals.

So, balance your high sals with low sals so you don't get too much.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#71 IrishHeart

 
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Posted 27 April 2012 - 04:25 PM

ACV is apple cider vinegar

another "homeopathic" remedy :rolleyes:

STOP this!

VINEGAR is the worst thing for you right now!! Sals galore.


See what I mean about this advice you are getting from the people who are not DH and celiac-savvy??

sweetie, you are doing TOO many remedies without controls. Been there/ done that

Please hear me. I did that for 3 years. Thousands of $$$ and nothing helped.

Just stop trying "remedies". Berries are high in sals.

Eat food low in sals. As we recommended. Drink WATER. that's it. Eating a whole box of cookies --they are FULL of SUGAR and anyone would feel like crap after that.

One thing at a time.

Plain diet. Water.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#72 CeliacFashionista

 
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Posted 27 April 2012 - 04:35 PM

Honey,

Anytime we change our diets, our bodies REACT. Die off, sloughing, and detox occurs. It's a messy process . Hair falling out could be your thyroid. OR it could be what I had--"anorexia " from celiac. I was FAT. Then I was so emaciated, they called me anorexic. What hogwash. I was trying to eat and trying ALL the things you are.

None of it worked. I lost everything I choked down-- both ways.

I felt like total SH*T for 3 years and even after I went gluten-free---for 10 MONTHS !!

You feel awful, but you are not going to die. I promise!

You do not hear this part: it takes more than a month to heal a damaged gut from celiac. It takes more than ONE packet of Culturelle to be effective. It takes months to heal.
Sorry.

You have to get the steroids out of your system.

You may be overdoing things. Raw kefir made me vomit, feel weak and sweaty and have diarrhea so bad that my hubs had to prop me up on the toilet so I could pass it out and hold a cold cloth on the back of my neck so I would not pass out.

IT is TOO much for your GI tract.

I am trying to get you to see that your gut is so damaged that... THE gut IS WHAT YOU NEED TO HEAL FIRST. Then, the probiotics and yogurt and everything else will be beneficial.


I'm suggesting: start anew. Easy does it.

Water. Lots of water.
probiotics.
No dairy.
Eat chicken, meats, fish
Vegs (but no canned toms)
eggs
No fruits, except peeled apple, pear and mango
nuts and seeds (except what is listed above).
white rice is okay.


Just try it for 2 weeks.
I hope you feel better soon.

ok can I still take flaxseed oil?...it and cod liver oil are the only thing that kept my skin from overdrying. I can't eat eggs or fish(low iodine) though.
  • 0

#73 pricklypear1971

 
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Posted 27 April 2012 - 04:37 PM

ok can I still take flaxseed oil?...it and cod liver oil are the only thing that kept my skin from overdrying. I can't eat eggs or fish(low iodine) though.


Read my responses, above.

You can have EGG WHITES. Iodine is in the yolk.
You can have FRESH WATER fish. Iodine comes from the salt water/kelp.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#74 squirmingitch

 
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Posted 27 April 2012 - 04:41 PM

ok can I still take flaxseed oil?...it and cod liver oil are the only thing that kept my skin from overdrying. I can't eat eggs or fish(low iodine) though.


Cod liver oil --- high iodine my dear
Flax seed oil --- high sals

Safflower oil = low iodine & low sals

Don't even research Olive oil --- I already did -- high sals
Coconut oil - high sals

Use Vanicream for your dry skin for now. And eat safflower oil. Your skin will eventually get better. One thing at a time, one thing at a time. Baby steps. None of us likes baby steps but baby steps are better than backwards steps or no steps at all.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#75 IrishHeart

 
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Posted 27 April 2012 - 04:44 PM

ok can I still take flaxseed oil?...it and cod liver oil are the only thing that kept my skin from overdrying. I can't eat eggs or fish(low iodine) though.



Cod liver oil is HIGH in Vitamin A and overdoses cause more problems than you want.

I can find NO evidence that flax oil is high in sals?

Squirmy? help? where did you see that sweets? :unsure:


Good nuts/ seeds:

Cashews

Hazelnuts

Pecan

Sunflower seeds

Safflower oil is good for omegas 3s.
Egg white omelets made with water are yummy.

You can have fresh water fish.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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