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

Require Restaurants To Have Ingredient Labeling

sillyactrus

By sillyactrus
in Gluten-Free Restaurants

Recommended Posts

sillyactrus Newbie
sillyactrus
Posted

I was diagnosed with Celiac Disease in May 2007. I got married in March 2007 and shortly after got very sick. I started passing out at work, was fatigued, and had two miscarriages. It became hard to walk and I had vertigo constantly. My situation got really bad when I was driving to work and I started to get dizzy yet again. My arm went limp and I hurried over to the side of the road. I talked to my husband and he couldn't understand because I was slurring my words. It was like a stroke. I went to ER and stayed in the hospital for a few days. We thought I had MS. Has anyone had this bad of neurological problems? Well I also found out that when I went to Mexico I got some parasites. Well I have had a very long and interesting medical history this past year in a half. I have been wanting to find others that I could relate to and learn from. I continued to get sick because I kept eating the wrong food. Now I am very very careful. One thing that drives me crazy is when you go to a restaurant and you ask them for a gluten free list and they begin to tell you what they think is probably ok. I then proceed to tell them that if I get any gluten in my system I might need to go to the hospital or I will be out of work for two weeks. Shortly after my miscarriage in November 2007 I was out of work for 2 months. I have very severe neurological reactions. So, basically I want to see if there is some way that restaurants can be required to give us an allergen list to see what is ok for us. Please respond and I would really like this to become a law or to have the FDA support this law. I was just wondering if anyone could give advise on what I could do or what we could do?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I am very sorry that you have had such difficulties. But, I am a firm believer that we take on sole responsibility when we eat outside our home.

We have Celiac Disease, restaurants did not cause this and it's not their responsibility to remedy the situation.

I am grateful when some restaurants make an effort to accommodate those of us with food concerns, but again, my health concerns are my responsibility alone.

kenlove Rising Star
kenlove
Posted

It's really a good idea but I wouldn't hold my breath for any time of national action. We've taken another approach in Hawaii to educate the culinary students on celiac and other food allergies and ingredients contained in food service items. Thats part of the problem for getting restaurants aware. They buy their ingredients from a wide variety of places and with mayo for example may get 2 or 3 different types form the supplier over the course of a year. @ of the 3 may be gluten free but the 3rd would not be. I use this as an example as I got glutened once because of a mayo change in a restaurant I frequent. Once a restaurant commits to gluten free items on a menu they will usually check for changes

but to order a meal and have people check in the average place would be darn near impossible. Even salad dressings --

sure we can get a salad in most places but I get tired of just putting lemon and oil on it for dressing although I have asked to see what they are using a read the bottles -- or bring my own with me. In short, restaurants will never check ingredients unless they have made a firm commitment to gluten-free items on the menu and even then some places might be questionable. If you look at my profile and get my website there is a list of does and donts for restaurants in Hawaii as well as a basic guide for culinary students. With the help of forum members, we put this together last year and its now been adopted by a number of culinary schools in Hawaii. Not all but a good number of them. A number of restaurants on the Big Island have also reviewed things with their staff and can safely offer gluten-free meals. It's not where is should be but its getting there and much better than it was. We had to start someplace. Its a good fight and worth the time and effort.

Ken

I was diagnosed with Celiac Disease in May 2007. I got married in March 2007 and shortly after got very sick. I started passing out at work, was fatigued, and had two miscarriages. It became hard to walk and I had vertigo constantly. My situation got really bad when I was driving to work and I started to get dizzy yet again. My arm went limp and I hurried over to the side of the road. I talked to my husband and he couldn't understand because I was slurring my words. It was like a stroke. I went to ER and stayed in the hospital for a few days. We thought I had MS. Has anyone had this bad of neurological problems? Well I also found out that when I went to Mexico I got some parasites. Well I have had a very long and interesting medical history this past year in a half. I have been wanting to find others that I could relate to and learn from. I continued to get sick because I kept eating the wrong food. Now I am very very careful. One thing that drives me crazy is when you go to a restaurant and you ask them for a gluten free list and they begin to tell you what they think is probably ok. I then proceed to tell them that if I get any gluten in my system I might need to go to the hospital or I will be out of work for two weeks. Shortly after my miscarriage in November 2007 I was out of work for 2 months. I have very severe neurological reactions. So, basically I want to see if there is some way that restaurants can be required to give us an allergen list to see what is ok for us. Please respond and I would really like this to become a law or to have the FDA support this law. I was just wondering if anyone could give advise on what I could do or what we could do?
sillyactrus Newbie
sillyactrus
Posted
  • Author

Thank you for your input. It has been interesting seeing how each restaurant is so very different. I always thought balsamic vinegar was safe but then a restaurant told me theirs wasn't safe. So I find it interesting how you can never just guess. I have really done my research and I will continue to do my research on what I should and shouldn't eat. I always go to the manager now and tell them my situation and that usually helps. I have just been disapointed a few times when I go to a restaurant and tell them about the allergies and they try to tell me that "Meatloaf is probably ok, or maybe not. You could probably just eat the salad." I am not saying that as a consumer I don't take responsibility I am just saying that more people should know about the allergies. I have gone to many places that are very accomodating. I don't think it is unresonable to see some changes in a few years. There are many people out there that would benefit from seeing what may or may not be in the food. As we all have learned guesses don't work. There are many times where we will not be able to eat at our homes and we may need to eat out. It would be nice to know of a surety that I am safe. Also there are many people with other allergies that may take them to ER and they can have very serious reactions. My coworker was very allergic to some fruit and there was some type of cross contamination. She became very sick and had to rush to the ER. Well those are just some of my thoughts. Ken that is great that you are teaching other chefs about the disease. Even just giving some chefs some basic knowledge about the disease would be very helpful. Great work

kenlove Rising Star
kenlove
Posted

Thanks,

Usually the easiest place to start is the restaurants you visit most often. Feel free to take the file I have and give it to them. The Italian celiac association files are great too and chefs here fine them helpful in preparing a gluten-free work location in their kitchens.

Good luck

Ken

Thank you for your input. It has been interesting seeing how each restaurant is so very different. I always thought balsamic vinegar was safe but then a restaurant told me theirs wasn't safe. So I find it interesting how you can never just guess. I have really done my research and I will continue to do my research on what I should and shouldn't eat. I always go to the manager now and tell them my situation and that usually helps. I have just been disapointed a few times when I go to a restaurant and tell them about the allergies and they try to tell me that "Meatloaf is probably ok, or maybe not. You could probably just eat the salad." I am not saying that as a consumer I don't take responsibility I am just saying that more people should know about the allergies. I have gone to many places that are very accomodating. I don't think it is unresonable to see some changes in a few years. There are many people out there that would benefit from seeing what may or may not be in the food. As we all have learned guesses don't work. There are many times where we will not be able to eat at our homes and we may need to eat out. It would be nice to know of a surety that I am safe. Also there are many people with other allergies that may take them to ER and they can have very serious reactions. My coworker was very allergic to some fruit and there was some type of cross contamination. She became very sick and had to rush to the ER. Well those are just some of my thoughts. Ken that is great that you are teaching other chefs about the disease. Even just giving some chefs some basic knowledge about the disease would be very helpful. Great work

Archived

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

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


  • Member Statistics

    • Total Members
      128,254
    • Most Online (within 30 mins)
      7,748
    brigette
    Newest Member
    brigette
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.
    • Heather Hill
      Does this definitely suggest Coeliac Disease?

      By Heather Hill · Posted

      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
    • trents
      Test uncertainty

      By trents · Posted

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
      Test uncertainty

      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
×
×
  • Create New...