Jump to content
  • 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

Getting Too Comfortable


KMMO320

Recommended Posts

KMMO320 Contributor

Sometimes, I get too comfortable and am not as vigilant as I should be. A few days ago, the restaurant I work at got a different type of potato chips and I grabbed a bag, just totally not thinking anything. an hour later, I had a screaming headache and when I got home, I took a nap. Later that night at my daughter's cheer practice, I whipped out a second bag that I brought home and started eating. Bored, I read the bag. Where it says Allergen information, it only started soy..nothing about wheat or gluten like a lot of products will say. so I read the actual ingredients, and there it was...Malt (Barley extract). I spit the chips out and threw them away. 

I was sick all that night and all the next day and night. 

 

Which brings me to today. I am still a little groggy feeling but much, much better. Almost a year gluten-free and I am still making rookie mistakes. I have to stop being too comfortable with what I "think" to be gluten-free. 

 

Just a reminder to all the still newly diagnosed like myself, always be vigilant!


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Oops, yeah always read the label like you said.  The last one I missed was bottled water.  I found eventually that it had added ingredients, but thankfully none disagreed with me.  Shew! 

 

I had seen one brand of  bottled water with wheat added several months back.  Just to clarify, I haven't found any since, so I think it is unusual.

D

flowerqueen Community Regular

Oops, yeah always read the label like you said.  The last one I missed was bottled water.  I found eventually that it had added ingredients, but thankfully none disagreed with me.  Shew!  I had seen bottled water with wheat added before.

 

D

Bottled water with wheat? My goodness, I'm never come across that one before! Thanks for the warning!

notme Experienced

 I had seen bottled water with wheat added before.

 

D

diana.  what brand of bottled water has wheat in it.  ???????????????????????????  

IrishHeart Veteran

Oops, yeah always read the label like you said.  The last one I missed was bottled water.  I found eventually that it had added ingredients, but thankfully none disagreed with me.  Shew!  I had seen bottled water with wheat added before.

 

D

 

 

what?? holy smokes.....that's not at all "usual."....are you sure?? name the brand please!!

IrishHeart Veteran

Sometimes, I get too comfortable and am not as vigilant as I should be. A few days ago, the restaurant I work at got a different type of potato chips and I grabbed a bag, just totally not thinking anything. an hour later, I had a screaming headache and when I got home, I took a nap. Later that night at my daughter's cheer practice, I whipped out a second bag that I brought home and started eating. Bored, I read the bag. Where it says Allergen information, it only started soy..nothing about wheat or gluten like a lot of products will say. so I read the actual ingredients, and there it was...Malt (Barley extract). I spit the chips out and threw them away. 

I was sick all that night and all the next day and night. 

 

Which brings me to today. I am still a little groggy feeling but much, much better. Almost a year gluten-free and I am still making rookie mistakes. I have to stop being too comfortable with what I "think" to be gluten-free. 

 

Just a reminder to all the still newly diagnosed like myself, always be vigilant!

 

 

Congrats!!--you went a whole year without making a doofus rookie mistake! I think that's admirable.

I know I can't say I went the first year without hitting myself. 

Might actually be a record around here or sumthin' :)

Sorry you got hit, though. ((huggles)) feel better soon

kareng Grand Master

Oops, yeah always read the label like you said. The last one I missed was bottled water. I found eventually that it had added ingredients, but thankfully none disagreed with me. Shew! I had seen bottled water with wheat added before.

D

If that is true, I think you need to tell us the brand! I can't imagine plain water could have wheat added. Why? It wouldn't be clear any longer! It wouldn't taste clear and fresh like bottled water is supposed to taste.

Please, everyone! Lets use a little common sense here!


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



Celiac.com Sponsor (A8-M):



howlnmad Newbie

 I had seen bottled water with wheat added before.

 

D

Me too, and not being a celiac, the only bottled water I drink that has wheat in it

.

It's called beer.

GottaSki Mentor

Me too, and not being a celiac, the only bottled water I drink that has wheat in it

.

It's called beer.

Exactly what I was going to say.

kareng Grand Master

Me too, and not being a celiac, the only bottled water I drink that has wheat in it

.

It's called beer.

Oh! It was a joke.....maybe? But it wasn't clear that it was and so it may have led one poster to think there is wheat in water and be worried needlessly.
1desperateladysaved Proficient

If that is true, I think you need to tell us the brand! I can't imagine plain water could have wheat added. Why? It wouldn't be clear any longer! It wouldn't taste clear and fresh like bottled water is supposed to taste.

Please, everyone! Lets use a little common sense here!

I am sorry, I don't remember the brand.  I bought it from a vending machine, read the label, and tried to give it away.  However, my friend wouldn't take it, so I set it down by the machine and left.  Most brands of water do not add it.  But really my only point is to read every label which should not hurt.  If anyone does know a brand name, let us know.

IrishHeart Veteran

I am sorry, I don't remember the brand.  I bought it from a vending machine, read the label, and tried to give it away.  However, my friend wouldn't take it, so I set it down by the machine and left.  Most brands of water do not add it.  But really my only point is to read every label which should not hurt.  If anyone does know a brand name, let us know.

 

sorry, but I cannot believe that any brand of plain bottled water would add wheat  to it. Just does not make sense.

BelleVie Enthusiast

I was just too intrigued by this and had to research it. I came across a blog on which the poster said that while on a road trip, she drank bottled water provided by her hotel. The poster has a wheat allergy and went into anaphylaxis. She apparently went online and read about the process used to add minerals back INTO the water, and one of the ingredients for that is something called "tocopherol," a wheat derivative. 

 

That's the first I've heard of something like this, but it honestly wouldn't surprised me. There are weird ingredients in all kinds of places they shouldn't be lurking! 

 

Anyway, here is a link to the blog if you'd like to check it out: Open Original Shared Link

w8in4dave Community Regular

And here I was going to start buying bottled water. I will look for "tocopherol" in water from now on in water. I have never had a reaction to bottled water tho. Yesterday I was reading this thread and then did a search and I should of saved it. Because I read somewhere that flavored water could have a wheat product in it. Pretty sure it said Lemon water. Like I said wish I'd of saved it. 

 

Back on topic tho , yea I assumed some corn chips at this one restaurant was Gluten free, but it wasn't I kept wondering what was making me react every time I went there and then I asked. They gave me their Gluten free menu and their chips were not on it. Pffttt!! Come on really???? Corn chips!! Corn chips have Gluten!! Anyhoo I know not all corn chips do. The ones I buy do not have it. I assumed these did not.  

flowerqueen Community Regular

I was just too intrigued by this and had to research it. I came across a blog on which the poster said that while on a road trip, she drank bottled water provided by her hotel. The poster has a wheat allergy and went into anaphylaxis. She apparently went online and read about the process used to add minerals back INTO the water, and one of the ingredients for that is something called "tocopherol," a wheat derivative.

That's the first I've heard of something like this, but it honestly wouldn't surprised me. There are weird ingredients in all kinds of places they shouldn't be lurking!

Anyway, here is a link to the blog if you'd like to check it out: Open Original Shared Link

I don't give too much credence to other people's blogs, unless i know the person is well qualified in their field. For one thing she said, she 'went into anaphylaxis and had to pull over to pass out'! You don't 'pass out' with anaphylaxis, your organs shut down and need an adrenalin injection to stop you from dying! Also, she said tocopherol is a wheat derivitive, this too is not strictly true. You can get tocopherol (also known as vitamin E) from wheat, but you can also get it from other sources, for example, sunflower oil. I use products with tocopherol in them, I just check with the manufacturer to see if it's gluten free tocopherol (i.e. a non- wheat source vitamin E).
IrishHeart Veteran

Regarding tocopherols. Read the science, not anecdotal evidence from a blogger.

People who say "i heard" or "I can't remember the name"--are not helpful at all.

It just serves to create a sense of paranoia that is groundless.

 

Read this article by Tricia Thompson, a registered dietician and celiac specialist, please:

 

Open Original Shared Link

 

There are too many myths and an abundance of misinformation on the internet.

Do the homework before you believe everything you read. :)

kareng Grand Master

Obviously, you would want to read the ingredients on a flavored or "vitamin" water.  I haven't seen any of those with wheat or any type of gluten  - but I guess one could turn up.  Some random person's blog or assertion on a forum about something that doesn't make sense - likely isn't true.

 

Please use some common sense!  Most Celiacs live in the world and are not "glutened" all the time from odd "hidden" things.

psawyer Proficient

The Canadian Celiac Association lists tocopherols as a safe food ingredient, without qualification. While wheat germ oil is a possible source, the resulting product is gluten-free.

Here's an Open Original Shared Link about Vitamin E and tocopherol.

BelleVie Enthusiast

I wasn't saying that the information that I found was fact...just pointing it out as the only info I could find regarding the idea of wheat additives in bottled water.  :)

IrishHeart Veteran

I wasn't saying that the information that I found was fact...just pointing it out as the only info I could find regarding the idea of wheat additives in bottled water.  :)

 

 

We get that part, hon---but  then we all have to try to explain to readers of the thread why it was not really valid  :) that's what we do.

People look to this forum for solid information about celiac and negotiating the gluten free diet. 

A random blog entry? Not really valid.

BelleVie Enthusiast

We get that part, hon---but  then we all have to try to explain to readers of the thread why it was not really valid  :) that's what we do.

People look to this forum for solid information about celiac and negotiating the gluten free diet. 

A random blog entry? Not really valid.

 

Fair 'nuf.  :)

AlwaysLearning Collaborator

Holy tangent, batman.

I'm thinking that there are plenty of water products out there that contain gluten, but not so much for plain water. I'd read the label on anything that had flavorings, vitamins, or even colorings added. And I don't consider the "Vitamin Water" brand to be water myself, but I bet others do.

To the original poster, so sorry to hear that you got busted on such a simple thing. Hope you're feeling better soon.

1desperateladysaved Proficient

Sometimes, I get too comfortable and am not as vigilant as I should be. A few days ago, the restaurant I work at got a different type of potato chips and I grabbed a bag, just totally not thinking anything. an hour later, I had a screaming headache and when I got home, I took a nap. Later that night at my daughter's cheer practice, I whipped out a second bag that I brought home and started eating. Bored, I read the bag. Where it says Allergen information, it only started soy..nothing about wheat or gluten like a lot of products will say. so I read the actual ingredients, and there it was...Malt (Barley extract). I spit the chips out and threw them away. 

I was sick all that night and all the next day and night. 

 

Which brings me to today. I am still a little groggy feeling but much, much better. Almost a year gluten-free and I am still making rookie mistakes. I have to stop being too comfortable with what I "think" to be gluten-free. 

 

Just a reminder to all the still newly diagnosed like myself, always be vigilant!

I know what you mean.  I make careless mistakes after 18 months gluten free.  Thankfully, sometimes I get by with it.  Like I don't read the label, but it was safe anyway.

andi1235 Rookie

And here I was going to start buying bottled water. I will look for "tocopherol" in water from now on in water. I have never had a reaction to bottled water tho. Yesterday I was reading this thread and then did a search and I should of saved it. Because I read somewhere that flavored water could have a wheat product in it. Pretty sure it said Lemon water. Like I said wish I'd of saved it. 

 

Back on topic tho , yea I assumed some corn chips at this one restaurant was Gluten free, but it wasn't I kept wondering what was making me react every time I went there and then I asked. They gave me their Gluten free menu and their chips were not on it. Pffttt!! Come on really???? Corn chips!! Corn chips have Gluten!! Anyhoo I know not all corn chips do. The ones I buy do not have it. I assumed these did not.  

Regarding corn chips and gluten-free, I went to a restaurant once where their corn chips weren't gluten-free because they were made at the restaurant, and they had a shared fryer. 

 

Actually, that's also the source of my "best" (and by best I mean worst, LOL) gluten-free restaurant story. I ordered a meal that would normally have come with bread, and I asked them if I could get corn chips instead. They came back and told me their corn chips weren't gluten-free because of their shared fryer, so I said never mind to the chips, and just figured I'd eat my meal without them. When my food came, I had a side of chips. I said to the waiter "oh, did you find some gluten free chips?" thinking that maybe they had a bag in the kitchen for some reason, and the waiter said "no, I just thought you might want them anyway." Sigh. Other than that, the meal was fine; I didn't get sick or anything, but I won't be going back to that place any time soon.

luvs2eat Collaborator

I can relate. I've been completely gluten-free for 10 years. A good few months back I grabbed a bag of Rudi's (Rudy's?) hot dog buns.... not knowing they also made non-gluten-free products. The reaction I had from eating ONE got dog bun was so severe... I've spent the last many months rereading many of my old labels... not trusting ANYONE or ANYTHING. What a terrible learning curve!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.