Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

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

Recommended Posts

Can I say that I hate this disease? Oh I hear nobody chiming up and saying they love it....

My biggest problems have been nerve pain, neuropathy and depression and anxiety. Much of it is resolving on the gluten-free diet, although the nerve stuff is still not great. I don't think my nerve problems are diet related. I actually think I may get "flare ups" when I get stressed or tired. Just a theory...

I have been eating well. I started seeing a personal trainer that has me eating essentially NO carbs except from vegetables (very short term as I am SO addicted to sugar). My neuropathy and depression were getting WAY worse this week. I am wracking my brains wondering what is causing it. I am truly eating next to nothing processed (meat, vegetable) and very high quality protein powder n(Gluten free).. The only difference is I am using soy milk...I stopped the soy milk yesterday and am already feeling mentally better today. What the hell?

Not having ANY stomach symptoms makes it really difficult to determine what is going on. I thought soy was bad from a stomach standpoint, maybe I am wrong? Can it cause other systemic problems? Doctors are no good to me since I am such a "medical marvel" and non standard celiac, they don't know what to do with me.

I think I get three steps ahead and then get pushed back 10. Depressing, like this will never get better and I will never feel normal again. Grrrrr. OK stepping off the pity pot. I just hate the unpredictability of never knowing how I am going to feel.


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I don't blame you, they say go gluten free. we do that and there are still problems...totally sucks..it is frustrating. I am still trying to find out what is causing my problems as well..I get anxiety everyday.and that is just the beginning..I hope you are feeling better!

Share this post


Link to post
Share on other sites

soy makes me feel inexplicably depressed.

boot out ALL soy and see what happens for ya. (including soy lecithin, soy oil, etc. you can experiment adding certain kinds back in later.)


gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

Share this post


Link to post
Share on other sites

thanks!!

luckily with this guy, i am seeing how to eat little to no processed food, so it shouldn't be too hard...i was SO depressed yesterday and the cloud has lifted today with no soy.

I will do whatever it takes. Before I knew what was wrong, I would say to my Dr that I would eat cat s*&t if it made me feel better.

thank goodness for this place to work out the frustrations of this...most people do not understand.


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

Share this post


Link to post
Share on other sites

I hear your frustration and you should know I said I would eat rocks if it would make me feel better! :lol:

SOY is a bad boy!!! It causes so many on here so many issues: nerve pain, anxiety, stomach distress. Me, included.

It is a mood disruptor--acts on the estrogen in your body.

Soy is bad.

Dump the soy. No soybean oil, no soy lecithin.

See if it helps!! :)


"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

Share this post


Link to post
Share on other sites

wow, soy is dumped!!! which is too bad because I really liked the soy milk :(

whatever. I liked pizza and fresh french bread too and look where THAT got me!!!

Hopefully the cat poop is NOT in my future now that I may see that soy is a culprit. Will be interesting to see if there is improvement tomorrow


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

Share this post


Link to post
Share on other sites

try almondmilk! I drink almondmilk instead of soymilk and I like it a LOT better. (I am vegan for 50% of the year for religious reasons and I only used soy for a few months before I replaced it with the almond.)

There's also rice milks, hemp milks (?? no idea about this one), and I saw hazelnut milk in the store too. But my personal recommendation is almondmilk.


gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

Share this post


Link to post
Share on other sites

It could also be gluten cc of the soy, too - crazy, this stuff. I know what you mean about the challenge when there's no tummy stuff; I'm mostly neuro, too.

Some soy is grown as a rotation crop with wheat, in the same fields, and tends to be a bit gluten cc'd. If you are curious if this is the case, you could always try to get some fresh soy beans still in the shell (non-gmo, maybe?) from a freezer section. Wash the outside with gluten-free soap and water (because these may have gluten, too), and see if the beans themselves get you, or if it's the potentially cc'd soy in the processed goods. Or even try to grow it yourself and try some of that. I'm doing that with a couple veggies that are so often cc'd with some of my allergies that I'm not sure if they are an issue, or the cc'ing is the issue, you know?

Also, my GI doc mentioned that he sees a lot of celiacs who have big problems with genetically modified foods, and nearly all soy is genetically modified at this point. 93% was GM, in 2010's count. So that could be an issue, too. :-(

If it is simple and it's just the soy, another soy potential problem to look out for is citrus, apples and pears. They typically have wax coatings that contain either added soy or casein, to help the texture. If you become very sensitive to soy, this could be an issue.

I'll be honest, I had problems with almond milk. But you can make your own 'milks' surprisingly easily, as long as you've got a pot and a blender. If you make your own nut milks, you actually end up with this nut pulp that you can use in making veggie burgers.

At least, that's what I hear. Our first attempt at making nut milk, the nuts we used were gluten cc'd and we got horribly sick off of it. So we ditched the pulp too. :P


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

Share this post


Link to post
Share on other sites

wow, soy is dumped!!! which is too bad because I really liked the soy milk :(

whatever. I liked pizza and fresh french bread too and look where THAT got me!!!

Hopefully the cat poop is NOT in my future now that I may see that soy is a culprit. Will be interesting to see if there is improvement tomorrow

Didn't mean to sound like such a soy-hater :lol:

I liked soy milk too!

but I read a LOT about soy when I was tested for other food antibodies and found I had a SEVERE reaction to it. There are reports of it affecting everything from estrogen levels--including early puberty in girls--to causing depression and memory loss. It's not the fermented kind most Asians use in their cooking, that is good protein---but the bottom of the barrel soy remnants that are used as fillers in our prepared foods?? Not so good.

It's all debatable of course, and many soy advocates disagree. Who really knows?

I don't even eat soy (tofu is like eating rubber erasers if you ask me) but it is IN everything (like wheat fillers) from mayo to salad dressing.

It is difficult to digest--especially for those with damaged guts--and that is why it may be an issue.

SO many others on here have reported that eliminating soy helped them get rid of nerve pain. I remain hopeful mine will disappear too.

Here's the way I look at the whole thing...with our damaged guts...if it hurts, don't eat it. If you notice soy is affecting you, you may be better off with the cat poo!!! LOL LOL

Try the almond milk, the rice milk, the hemp milk.

Hope this helps!!! let us know, okay?? :)

and PS...my burning nerve pain is 24/7, the anxiety & depression --are part of the many awful symptoms I have along with gut stuff and major weight and hair loss, insomnia, joint/bone/muscle pain, lost muscle mass, etc....and I so "get it"...but I honestly heard from several people on here that the nerve stuff is the last to go, but that taking out soy protein was the key....so,hang in there!! ;)


"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

Share this post


Link to post
Share on other sites

Soy is literally poison in my opinion.

IrishHeart don't feel bad for being a Soy Hater. The only way people will find out is if us Soy Haters talk and spread the word. I would never have known to try eliminating soy if it weren't for you guys on this cite. Also, I would never have known soy could cause severe and profound and almost immediate symptoms of anxiety and depression. I am mostly neurological and skin form Celiac, and soy is really bad for me too.

Love Almond milk, but tried the Coconut milk...and blaaagh yucky. :ph34r:


Healing is a matter of time, but it is sometimes also a matter of opportunity.

--Hippocrates

Share this post


Link to post
Share on other sites

so, if I have a reaction to soy, I guess that means I can never have tofu or miso soup again??

I understand that unfermented soy is BAD and I only ever had edamame if I had unfermented soy, in the past... no soymilk, no fake meat, etc. Well, I did have soy oil but still. Fermented soy is GOOD FOR YOU... they eat it all the time in Japan, it's one of the reasons Japanese women have such a high life expectancy.

But if I react I guess I will react no matter what? It's not like lactose that can be digested by cultures and removed by fermentation?


gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

Share this post


Link to post
Share on other sites

I am not saying you will always react to soy and I am not suggesting you never eat it again--please don't get me wrong. I am saying that I cannot eat it, I tested "severe" for antibodies to it and from what I have learned about soy, it is not a good food--as it is processed in foods -- in THIS country at least. I wish I could recall the site where I read about why celiacs react to soy, but essentially, it was because of the digestion issue and the damaged gut.

Maybe, in time, you can have miso soup and tofu...! everyone is different!


"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

Share this post


Link to post
Share on other sites

the soy i bought was organic, non gmo and i am still convinced that it did me harm that I am still feeling the after effects of...so i am not willing to risk it for now...at least i know it is a possibility and i am so tenuous anyway that i am happy to wave b-bye to it!


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

Share this post


Link to post
Share on other sites

Then, you should avoid it and see how you feel.

I know how I feel is my best barometer of what I will continue to put in my mouth!

Better than resorting to cat poo... :D:huh:


"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

Share this post


Link to post
Share on other sites

really, hopefully no cat poo in my future...still having the nerve effects but the anxiety and depression is SO much better.

I remember (as I am sure all of you do) when it was SO simple and now everything is so complicated and just a big science experiment, where we are the rats in the cages...


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

Share this post


Link to post
Share on other sites

Then, you should avoid it and see how you feel.

I know how I feel is my best barometer of what I will continue to put in my mouth!

Better than resorting to cat poo... :D:huh:

cat poo or soy if I had to make a choice :ph34r:


Gluten free Oct/09
Soy free Nov/10

 

Share this post


Link to post
Share on other sites

cat poo or soy if I had to make a choice :ph34r:

um....I might have to choose the cat poo over the soy at this point.... :blink::lol::D


"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

Share this post


Link to post
Share on other sites

me too :o

ah chill, we are a pair...!! :DB);)


"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

Share this post


Link to post
Share on other sites

my two cats eat grain free food, so it is totally safe for us!! :lol:


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

Share this post


Link to post
Share on other sites

try almondmilk! I drink almondmilk instead of soymilk and I like it a LOT better. (I am vegan for 50% of the year for religious reasons and I only used soy for a few months before I replaced it with the almond.)

There's also rice milks, hemp milks (?? no idea about this one), and I saw hazelnut milk in the store too. But my personal recommendation is almondmilk.

I know a couple of people that drink hemp milk and I tried it on their recommendation, my son loves it but the rest of the house thought it tasted like butt. I would probably go with the Almond milk as well.

Share this post


Link to post
Share on other sites

my two cats eat grain free food, so it is totally safe for us!! :lol:

hey, mine does too! Maybe we should just eat THEIR food :lol: :lol: :lol:


"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

Share this post


Link to post
Share on other sites

I know a couple of people that drink hemp milk and I tried it on their recommendation, my son loves it but the rest of the house thought it tasted like butt. I would probably go with the Almond milk as well.

....tastes like butt...hehehehe :lol::D:blink:


"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

Share this post


Link to post
Share on other sites

Didn't mean to sound like such a soy-hater :lol:

I liked soy milk too!

but I read a LOT about soy when I was tested for other food antibodies and found I had a SEVERE reaction to it. There are reports of it affecting everything from estrogen levels--including early puberty in girls--to causing depression and memory loss. It's not the fermented kind most Asians use in their cooking, that is good protein---but the bottom of the barrel soy remnants that are used as fillers in our prepared foods?? Not so good.

It's all debatable of course, and many soy advocates disagree. Who really knows?

I don't even eat soy (tofu is like eating rubber erasers if you ask me) but it is IN everything (like wheat fillers) from mayo to salad dressing.

It is difficult to digest--especially for those with damaged guts--and that is why it may be an issue.

SO many others on here have reported that eliminating soy helped them get rid of nerve pain. I remain hopeful mine will disappear too.

Here's the way I look at the whole thing...with our damaged guts...if it hurts, don't eat it. If you notice soy is affecting you, you may be better off with the cat poo!!! LOL LOL

Try the almond milk, the rice milk, the hemp milk.

Hope this helps!!! let us know, okay?? :)

and PS...my burning nerve pain is 24/7, the anxiety & depression --are part of the many awful symptoms I have along with gut stuff and major weight and hair loss, insomnia, joint/bone/muscle pain, lost muscle mass, etc....and I so "get it"...but I honestly heard from several people on here that the nerve stuff is the last to go, but that taking out soy protein was the key....so,hang in there!! ;)

I'm glad you posted this, IrishHeart, because you were making me feel guilty for the soy I ingest! :P

I do agree that for some people, soy can be a problem. One of my friends gave it up as it was causing memory issues...noticeable memory issues. He is not a Celiac. I have had zero issues with the amount of soy I eat, which is not huge

as I eat little processed foods but I do eat some. Maybe I am lucky but soy seems to agree with me. It hasn't affected my hormone levels at all because the hot flashes are still there. I have read that Japanese women do not have hot flashes because of the soy they eat in their diet....better quality soy but soy all the same. Doesn't seem to do that much for me, unfortunately!

I will try the almond milk, though, as I have been curious about the taste. I am always looking for alternatives and now that people here have recommended it, I'll give it a shot. The one treat I will not give up is the Starbuck's Chai Lattes, and I have to have them made with soy milk because I cannot do dairy. I bet it would taste great with the almond milk! I wonder if Bucky's would agree to make them with almond milk, if I brought it in? ^_^

Share this post


Link to post
Share on other sites