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

Very Upset!


watkinson

Recommended Posts

watkinson Apprentice

My daughter and I (who are both celiacs) stopped by a store that we frequent in Clarksville Maryland. It's called Root's. A great store! However.....We were thrilled to see on the wall in the back, rack after rack of gluten-free foods, with a big sign that said "welcome to our new gluten free section". Wow!! :D escellent!!

But looking through the stuff we found several items that are not gluten-free, just wheat free. Example: Newman's chocolate cookies (kinda like oreo's). My daughter had made the mistake last year and bought a package. My daughter couldn't understand why she was so sick all the time. We finally discovered that they have barley flour in them. <_< Anyway.... we told the mananger at the store that these were not gluten-free just wheat free. He said "the packages that are gluten-free state on the front of the package that it is gluten free, if it's just wheat free it won't say gluten-free". We told him that he should change the sign since it says gluten-free section, it should read gluten-free and wheat free section. He said that "the customers know that it is the alternative foods section." We said "no, you have it listed with a big sign "GLUTEN FREE SECTION" with several racks of gluten-free stuff. The Newman products are immediatly next to the sign. Most people would obviously asume they are gluten-free. We told him that wheat free does not mean gluten-free and that if I ate one of those cookies, that I would be sick for probably 2 weeks. In the end...he did nothing. As far as I know the sign is still the same way. I KNOW people will be getting sick and make the same mistake we did. If anyone else knows about this store please say someithing to the management. And if you are eating the Newman cookies check out the ingredients. Some of them are gluten-free but a couple aren't

Thanks, Wendy


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I say go over his head until you find someone who listens to you. Go to the owner of the company if you have to. If they won't listen to you even at that level, maybe ask your diagnosing doctor to call them and read them the riot act. If they still won't correct the situation, call the media. There is one TV station in my area that has a consumer reports type department where they will help you out if you're getting a serious run-around by a company. Like those stories we all hear about when a contractor runs out on a half-done remodeling job. I think this would SERIOUSLY qualify as a consumer problem. It would be like a store saying their cakes and cookies were sugar-free for diabetics, and they weren't. That would raise a stink, and so would this.

This isn't what normal people think of as an allergy. We aren't talking about getting a rash, or just feeling nauseous for a few hours. This will DESTROY the lining of people's intestines. This isn't like diabetes where people can usually have a little bit of sugar. This is on a completely different level. Especially since some people don't get many symptoms and don't know when they've been cross-contaminated or have been eating something with hidden gluten. So people can be eating something they've been told is gluten-free for years without realizing it.

This whole situation just gives me chills up my spine. How dare they.

Nancy

Judyin Philly Enthusiast

Good Job Wendy---keep up the good work and hopefully others who are celiac disease and using the store will speak to the management too.

Thanks, Judy in Philly

Becky6 Enthusiast

That is awful! I agree! Go above him! And some people who are new to this are just so happy to see safe foods that they may not even look at the label! Good for you for standing up for it!

watkinson Apprentice

Thanks guys :)

I did E-mail the company yesterday. I asked for a reponse, but have still not recieved one. It's a great idea to talk to the owner, that will be my next step. Your'e all right though...it is terribe!! I mean obviously this guy just didn't get it, this is a serious disease with serious ramifications. I'll let you all know when or if I get a response from them.

Thanks, Wendy

jenvan Collaborator

I also agree with Nancy. Get a district manager etc... It's different than wanting to complain about an incident that happened to you alone...you are trying to protect other people from getting sick. Good for you to take initiative! Let us know how it goes.

nettiebeads Apprentice

I bet he was thinking "militant mom nut case" but we know how important the difference is between wheat free and gluten free. I wonder if the Better Business Bureau would be interested? It is false advertising.

Annette


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star

That sucks, Wemdy. i know there are some places like that too that its a health food store, but they have the gluten containing items mixed in between the gluten-free ones, and the gluten-free ones mixed in between the gluten containing items. But I can understand, very tight for space. (VERY tight).

But since you say "racks and racks" i assume that its a bigger store.

i think you should keep talking to whoever you can to get that problem fixed, maybe they think just because they dont have the disease themselves they dont think there is a difference between wheat-free and gluten-free, or even more probable, they just dont care.

good luck with that!

~ lisa ~

Archived

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

  • 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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,101
    • Most Online (within 30 mins)
      7,748

    Steve Olson
    Newest Member
    Steve Olson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.