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

False Advertizing

Kategrad7

By Kategrad7
in Coping with Celiac Disease

Recommended Posts

Kategrad7 Newbie
Kategrad7
Posted

I am currently spending the next 9-10 months in a very small town in upstate New York and when eating out my options are pretty limited. There is a coffee shop that has had soups and chilies that are labeled gluten free and they are fantastic!

Last week I got sick and could not for the life of me figure out what it was, everything I ate was labeled as gluten free, including the white chicken chili but I was so tired I could barely function. I went back to that same store this weekend and found that they store the loaf of French bread on top of the soup containers!

I went to the manager and explained that the soup is advertized as gluten free and when they keep the bread on top of the soup containers (the lids have holes for the ladles) it is not really gluten free. He said he would

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

Celiac.com Sponsor (A8-M):


sandsurfgirl Collaborator
sandsurfgirl
Posted

Please please do not go in there and threaten to sue him or something like that. Restaurants to do not have to accommodate anybody's allergies. They do it to be helpful as well as bring in a larger customer base. If people start threatening restaurants they will all just quit offering it. If I owned a restaurant honestly I would be scared to offer anything gluten free for that very purpose.

The best thing you can do is be nice, tell them you appreciate that they are offering gluten free good and then explain why CC is an issue. Be simple and direct. "Most people with celiac disease will have a reaction to very small amounts of gluten. Even a few crumbs can make a person with celiac sick for a week. Could you please be careful with the gluten free soups and any other items you label gluten free? I was sick after eating in your restaurant for X amount of days and I was in a lot of pain."

You will get more flies with honey than with vinegar.

Emilushka Contributor
Emilushka
Posted

I completely agree. People don't understand how little gluten it can take to get you sick, and it's not because they don't care. They just don't realize how miserable Celiac is. I get people all the time who say, "Oh, I just wouldn't be able to give up [delicious bread product]!" and it's because they don't understand what misery it is to eat that delicious bread product if you have Celiac. I told someone last night that if your pooping made you cry, you'd find that delicious product a lot less tasty. That almost got the message across.

But please remember that to people who haven't seen this up close and personal, it doesn't seem that bad. It's not really a part of the public consciousness yet. The store owner is probably a great guy who would really care about helping people not get sick.

Skylark Collaborator
Skylark
Posted

I agree too. That manager needs to know that you will be a regular customer and appreciate his attention to details if things can be sorted out. He also needs to know exactly what happens to you when so-called "gluten free" food has breadcrumbs in it.

There is legal recourse, but you would have to hire a lawyer and I think you would have to prove there was gluten in the soup. Then you have to demonstrate monetary damages (like medical bills or missed work).

Kategrad7 Newbie
Kategrad7
Posted
  • Author

Thank you for all the help. I am very non-confrontational and just saying something to the management was a big step for me in terms of being pro-active about my health.I would never consider legal action appropriate especially in this case. I was just wondering if there was an over all organization that has pamphlets for shop owners who want more information on how to keep products gluten free or what that means, so it's not just me standing there saying "um thats not a great thing to do" as he places the bread on top of the soup containers. Sometimes I wish there were three classifications, wheat free, gluten free and celiac safe, then we would know that the food as well as the prep was safe!

irish daveyboy Community Regular
irish daveyboy
Posted

Thank you for all the help. I was just wondering if there was an over all organization that has pamphlets for shop owners who want more information on how to keep products gluten free or what that means, so it's not just me standing there saying "um thats not a great thing to do" as he places the bread on top of the soup containers.

This may be of help.

Open Original Shared Link

Plus

just how small is 20 Parts Per Million (very,very,very small) check it yourself.

In the example 1/5 of 1 square equals 20 dots

The whole page (scroll right) = 1,000,000 dots.

Open Original Shared Link

Best Regards,

David

Takala Enthusiast
Takala
Posted

Thank you for all the help. I am very non-confrontational and just saying something to the management was a big step for me in terms of being pro-active about my health.I would never consider legal action appropriate especially in this case. I was just wondering if there was an over all organization that has pamphlets for shop owners who want more information on how to keep products gluten free or what that means, so it's not just me standing there saying "um thats not a great thing to do" as he places the bread on top of the soup containers. Sometimes I wish there were three classifications, wheat free, gluten free and celiac safe, then we would know that the food as well as the prep was safe!

_________

Yes, there is a restaurant organization for this.

Open Original Shared Link

Also, word gets around because most places have a support group or message board for celiac/gluten intolerant. Most of us are pretty lenient, and cautious, because we may not be sure of what the reaction was to, but if we are sure and it happens a few times, and we have seen the evidence, it might get mentioned somewhere.

My favorite place is changing locations, and is closing for the month of Oct while they move. They are rather astonished we drive that far to get their food, but not only is it gluten free, it's absolutely delicious Indian curry, and when we gluten free people find something that works, we are loyal customers. I found them by googling gluten free and the name of the town. When they reopen, we will go back. I am already planning the drive route, it might be easier for my spouse to drop in there after work and get take out sometime. I hope I can still point people there.

There is another place up near the lake that I found a news magazine article on, that mentioned they had a gluten free sushi menu option now. We called and then checked it out, and it was also fantastic. My rule is that I eat at something several times before mentioning it, to make sure they're consistent, but I am eagerly awaiting the next trip. The thought of having a decent gluten free meal out in that part of the tourist area is wonderful. The restaurant scene is very competitive in these tourist areas and when I checked the reviews, everybody was very positive about this one. There is a different restaurant that has some gluten free options, on another side of the lake, that was written up by a gluten free reviewer, but the reviews from the gluten eaters showed that the service is a bit inconsistent, and the hours are too, so, oh well. Oh, and they close all the time before holidays. I was trying to memorize when they were actually going to be open, and thought, this sounds like too much of a hassle.

There is also a nondescript looking from the outside, bar and grill watering hole on the way up to the ski areas, just off the highway, that we've stopped in lots and I've gotten the simple meat and vegetables routine and have never had any problem with, and the staff has always been really nice, even if they don't have it written on the menu. I pass the word around locally, even to regular diners, because I really want this place to stay open. The rest of the menu is actually great, too. B)

Hopefully you can get this resolved with the people who are putting the bread on top the soup containers. ( I'm appalled !) I am sure that most restaurant owners would rather have us dragging companions into these places because we can eat there, instead of the opposite.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    4. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    5. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.