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

Has Anyone Been Glutened By Nestle Hot Cocoa Mix?

danikali

By danikali
in Coping with Celiac Disease

Recommended Posts

danikali Enthusiast
danikali
Posted

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!

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

Celiac.com Sponsor (A8-M):


Mango04 Enthusiast
Mango04
Posted
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.

danikali Enthusiast
danikali
Posted
  • Author

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.

Mango04 Enthusiast
Mango04
Posted

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.

danikali Enthusiast
danikali
Posted
  • Author

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????????????

mookie03 Contributor
mookie03
Posted

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?

aikiducky Apprentice
aikiducky
Posted

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

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

Celiac.com Sponsor (A8-M):


Judyin Philly Enthusiast
Judyin Philly
Posted
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

Rachel--24 Collaborator
Rachel--24
Posted

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.

hez Enthusiast
hez
Posted

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

CMCM Rising Star
CMCM
Posted

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.

frenchiemama Collaborator
frenchiemama
Posted

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.

danikali Enthusiast
danikali
Posted
  • Author

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!

CMCM Rising Star
CMCM
Posted
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. :(

gointribal Enthusiast
gointribal
Posted
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?!

CMCM Rising Star
CMCM
Posted
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?!

Well, I hate to be so negative, but honestly, allergists have been ZERO help to me and my son over the last 12 to 15 years. We've spent an absolute fortune and learned nothing from them and nothing got better because of them. I took things into my own hands to confirm my own suspicions. You can get your own casein test thru Enterolab. If you just want a casein test and not the gluten tests, it's cheaper than the full gluten sensitivity panel, which also includes a gene test for celiac/gluten and also includes a casein test. That's the one I did because I wanted to find out about it all at once (cheaper that way). I guess my message is this: Don't think or believe doctors know everything, because they don't. And far too many of them, when faced with something they don't know about (like celiac), don't bother to learn about it either. My experiences with doctors in general have not been very positive. I spent 25 years trying to figure out the source of my problems, and in the end, I found the answer through my own personal efforts. <_<

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,283
    • Most Online (within 30 mins)
      7,748
    CSK 157
    Newest Member
    CSK 157
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      beans in dessert recipes

      By lmemsm · Posted

      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      Gluten free/ non dairy , low calorie pudding

      By lmemsm · Posted

      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Finding gluten free ingredients

      By lmemsm · Posted

      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      Doctors and Celiac.com

      By chrish42 · Posted

      All I can say is this site is great!
×
×
  • Create New...