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Has Anyone Been Glutened By Nestle Hot Cocoa Mix?


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15 replies to this topic

#1 danikali

 
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Posted 08 February 2006 - 01:42 PM

HI,

These past couple of days, I've gotten REALLY BAD stomach aches on and off during the day, and yesterday I was constipated, then had finally went, and there was blood in the toilet. Then after that, I had "D." Also, today, my knee pains came back, which only happens when I get glutened. Actually, all of this happens when I get glutened. I'm thinking, either I was cross contaminated somehow, or the Nestle hot chocolate that I've been drinking everyday has made me sick. It says 'gluten free' right on the package, so I'm thinking they know what they're doing, but maybe there is wheat in their facility? That is the only NON whole food that I've been consuming. Everything else is fruit, veggies, meat and fish........oh, and Dr. Pepper.....could that be a problem? It has never been before.........

I may have a problem with dairy, but I'm not sure because when I drink whole organic milk, I'm totally fine. But then again, I've had regular vitaman D milk and had problems, it wasn't organic. Is there a big difference?

Anyway, what do you guys think? I figure some expert on this forum could help me. Thanks!
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

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#2 Mango04

 
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Posted 08 February 2006 - 01:46 PM

I may have a problem with dairy, but I'm not sure because when I drink whole organic milk, I'm totally fine. But then again, I've had regular vitaman D milk and had problems, it wasn't organic. Is there a big difference?


Yes, there is a BIG difference between organic milk and conventional milk. If you think one bothers you and the other doesn't you could quite possibly be correct.
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"Let food be thy medicine, and let thy medicine be food." - Hippocrates

#3 danikali

 
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Posted 08 February 2006 - 01:49 PM

So that means that I could have a problem with anything but organic?

But you know, I can't have problems with all dairy because when I eat popcorn readymade with butter in it, it doesn't bother me........

I hate this.
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#4 Mango04

 
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Posted 08 February 2006 - 01:58 PM

Sorry you're having a hard time. It sounds like you had a pretty strong reaction too. Dairy is like gluten in some ways, especially casein. Just because you don't react to it every time, doesn't mean you are not intolerant. Have you ever tried eliminating dairy from you diet entirely? Maybe you should try doing so for a couple months, and then slowly reintroduce it to see if you react.
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"Let food be thy medicine, and let thy medicine be food." - Hippocrates

#5 danikali

 
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Posted 08 February 2006 - 02:04 PM

Well, I just called Nestle and the girl was SOOOO NICE. She said that because it said gluten free on the box, they guarantee that it is 100% gluten free and there are no possibilities of cross contamination. She is also sending me coupons for other gluten free products, that I can get for free! Geez........I guess it's not the hot chocolate I drank, unless it was the milk in there, or something else. It was the carb select one, so maybe there was something in there that I just can't handle right now. Hmmmmmmm......but then again, my knees hurt, and that strictly means gluten for me.

I'm at a loss again. I guess it's back to NO PROCESSED ANYTHING 100% AGAIN!!!!

Any suggestions anyone?

Is it just me, but when you are feeling good, do you completely get more careless on the diet? Not that I would ever eat gluten, but I may not wash an apple, or I start eating processed things and then a couple weeks later, I've added so many processed things that I get sick and will never find out where from! I just get so annoyed with having to eat healthy 100% ALL OF THE TIME!!!! It's not fair!

Sorry you're having a hard time. It sounds like you had a pretty strong reaction too. Dairy is like gluten in some ways, especially casein. Just because you don't react to it every time, doesn't mean you are not intolerant. Have you ever tried eliminating dairy from you diet entirely? Maybe you should try doing so for a couple months, and then slowly reintroduce it to see if you react.


That's interesting, and I never knew that! I thought that if milk didn't bother me once, or twice or three times, that it's completely okay!

And yeah, I was drinking milk every couple of days at HOME and then I went to a resturant and had a huge glass of milk and got sick! So I went off of it for about 3 weeks, and then felt great! Then of course, I added it back in, and no problems.....and here I am again! Maybe I'm not always getting glutened then, maybe I'm getting 'caseined'

When will I learn????????????
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#6 mookie03

 
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Posted 08 February 2006 - 02:32 PM

Poor you dani :( you just cant win! i have never gotten sick from Nestle, and im not sure about your dairy question but i just wanted to say that often fat free or low carb stuff will make me sick...i dont know what the ingredients are in the carb select stuff, but my experience is that those kinds of things have a lot of extra crap in them that make them harder to digest...like maltitol, mannitol, xylitol...etc...those are just a few of the names ive seen that have made me sick...just a thought! often those things will also say "may have a laxative effect" or something. has the regular nestles made you sick ever? Also I would try drinking non-organic milk AT HOME and see how u react, b/c it seems strange that the milk in nestles would make u sick but not the milk in butter-- i mean u are making it w/ hot water right? so u are talking about dairy being in the actual product?
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#7 aikiducky

 
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Posted 08 February 2006 - 04:56 PM

Maltitol, mannitol and xylitol are all different kinds of sugars, and they gave give you D, especially in big quantities.

The other thing is, you haven't been gluten free all that long, have you? I used to go crazy trying to figure out where I would have gotten glutened from in the first months, but I think a lot of it was just natural ups and downs of the healing process.

Pauliina
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#8 Judyin Philly

 
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Posted 08 February 2006 - 05:04 PM

Sorry you're having a hard time. It sounds like you had a pretty strong reaction too. Dairy is like gluten in some ways, especially casein. Just because you don't react to it every time, doesn't mean you are not intolerant. Have you ever tried eliminating dairy from you diet entirely? Maybe you should try doing so for a couple months, and then slowly reintroduce it to see if you react.



Just because you don't react to it every time, doesn't mean you are not intolerant
HI
can you please tell why this is???
I've wondered so many times. :blink: Sometimes i think it's if i use rarely, i get a false sense of "it's ok"
and also wondered if 'it in combination of other things i ate that day' like mayo..
oh i'm so tired...
this is getting to me.
It just seems it's one question after another...
I've only been gluten-free for 6 months. How about you..too tired to look you up--got the big 'D' with gluten at Wendy's last nite a special treat but guess it was the cc cause i used 1/2 tube of s cream on b potato...
thanks for any insite.
judy in philly
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Judy in Southern CA

#9 Rachel--24

 
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Posted 08 February 2006 - 05:17 PM

Judy,

Some reactions are dose related...meaning if you eat something one day you may not react but if you eat it 3 days in a row or large quantities of it in one sitting you may get a reaction. Its why its very difficult to pinpoint intolerances. They arent always consistent.
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Rachel

#10 hez

 
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Posted 08 February 2006 - 07:13 PM

I could not handle milk after going gluten-free. It really messed me up. I have been gluten-free since April and have just recently started adding milk back into my diet. When I do have milk I take one of those lactose pills as well. That really seems to help. Never had any other issues with dairy (yogurt, cheese, sour cream) just milk.

Also when I first was gluten-free I kept thinking I was having a reaction to things that I knew were gluten-free. Now, I think it was the healing process. Sometimes I would feel great and other times lousy but it did not have anything to do with what I was eating.

Hope you feel better soon.
Hez
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#11 CMCM

 
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Posted 08 February 2006 - 08:43 PM

An allergist told me once that all of us, allergy or not, should really rotate most all foods, and particularly the problematic ones such as corn, dairy, wheat, soy etc. He said you should eat a food only once every 4 days or so. I do think you can reach some sort of "overload" state. I have a friend who loved and ate strawberries her entire life, and then one day at the age of 57 she ate them and ended up in the emergency room with an anaphylactic (or however you spell it) reaction. And that was it, now she can never touch a strawberry again.

What makes dairy so weird is that for me, at least, some things affect me every time, some affect me more than others, and sometimes there's no rhyme or reason behind a reaction. For example, whipped cream and ice cream would always mess me up...always. I could never decide why, but figured maybe it was the full fat nature of these things. Yogurt was less problematic, fat free milk so so. I always bought (buy) organic milk to avoid all the hormones etc. they put in milk or feed cows these days. Just a good idea when you have touchy digestive things going on.
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CAROLE

-------------
Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.

#12 frenchiemama

 
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Posted 08 February 2006 - 10:52 PM

I work for Nestle, and I want to assure you and everyone else that Nestle takes great pains to avoid cc in all of their products. They will use a dedicated line whenever possible, and when that is not possible they have very strict and thorough cleaning protocols that must be followed. They also do allergy awareness training with all of their employees.
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Carolyn


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#13 danikali

 
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Posted 09 February 2006 - 09:42 AM

Well thank you everyone for all of your input! So, either I have a problem with milk (which I decided I will finally get tested through enterolab for) or it's just my body acting up because I'm still in the healing process. I just think it's so weird when you are feeling like YOU'RE REALLY ON YOUR WAY! And then all of a sudden, you're sick again! It's like, will this ever end?

But thanks for all of your replys. And I agree with all of you. And Stefi, you're right. When something is low-fat, low-carb or whatever, they always add more artificial stuff to keep the calories down and with people with digestive problems like us, we just cannot handle it. It all makes sense really.

Thanks!
  • 0
Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#14 CMCM

 
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Posted 09 February 2006 - 11:08 AM

Well thank you everyone for all of your input! So, either I have a problem with milk (which I decided I will finally get tested through enterolab for) or it's just my body acting up because I'm still in the healing process. I just think it's so weird when you are feeling like YOU'RE REALLY ON YOUR WAY! And then all of a sudden, you're sick again! It's like, will this ever end?

But thanks for all of your replys. And I agree with all of you. And Stefi, you're right. When something is low-fat, low-carb or whatever, they always add more artificial stuff to keep the calories down and with people with digestive problems like us, we just cannot handle it. It all makes sense really.

Thanks!



If you've identified milk as a definite culprit, you're probably right. The question will be, is it merely lactose intolerance made worse by gluten damage or is it casein sensitivity. If you're not casein sensitive, then perhaps at some point the lactose intolerance will lessen or go away. If it's casein, it won't go away. That's my understanding at least. The other bad thing about lactose intolerance is that it apparently becomes more problematic as you get older, i.e. some people who had no problem when they were younger will have problems as they get older. But I also just read that some doctors/researchers believe fully 75% of Americans are lactose intolerant. Your chances are excellent that at the very least you are lactose intolerant. My impression is that it is an inconvenience more than anything. But casein sensitivity can be just as damaging to the intestines as gluten sensitivity or celiac, and therefore, it's important to know you have that as well because if so, you must stop eating dairy for the same reasons you have to stop eating gluten. :(
  • 0
CAROLE

-------------
Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.

#15 gointribal

 
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Posted 12 February 2006 - 07:30 PM

If you've identified milk as a definite culprit, you're probably right. The question will be, is it merely lactose intolerance made worse by gluten damage or is it casein sensitivity. If you're not casein sensitive, then perhaps at some point the lactose intolerance will lessen or go away. If it's casein, it won't go away. That's my understanding at least. The other bad thing about lactose intolerance is that it apparently becomes more problematic as you get older, i.e. some people who had no problem when they were younger will have problems as they get older. But I also just read that some doctors/researchers believe fully 75% of Americans are lactose intolerant. Your chances are excellent that at the very least you are lactose intolerant. My impression is that it is an inconvenience more than anything. But casein sensitivity can be just as damaging to the intestines as gluten sensitivity or celiac, and therefore, it's important to know you have that as well because if so, you must stop eating dairy for the same reasons you have to stop eating gluten. :(


So should I go see an allergist instead of having my normal doctor test for a casein, lactose or milk allergy? For that matter would an allergist know how to read the gluten tests better than a reg. doc. or do allergist not deal with celiac? Help?!
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