How Much Do You "risk It" By Eating Foods That You Feel Are Gluten Free, But Can't Be Certain?

[lizajane]

Of course, eating out is always a risk. If not from ingredients, then from cross contamination. So far, I have done just find in restaurants by explaining to the server that s/he needs to consult the chef before serving my meal (folks have been SO kind and helpful with only one exception) and by asking line workers to switch gloves, etc before making my salad after preparing burritos, for example.

But this weekend, for example, I am visiting my family for my brother's college graduation. My sister is a wonderful cook and checked every single ingredient, listened carefully to CC guidelines and even called 1-800 #s to check on "natural flavors" etc. so i felt totally fine about eating what she prepared.

But last night, we went to a dinner at someone's home. The food was beautiful- clearly the hostess knew what she was doing! I asked her about gluten, and she pointed out the foods I could not have. I ate the salmon and fruit and salad. Felt fine.

Today, I went to a special reception after my brother's graduation because my Dad is on the faculty. It was a catered buffet with poached dill salmon, green bean, vidalia onion and tomato salad, fruit, etc... that is what I ate. I did not use the forks that were covered in pasta that had fallen out of the bowl. And I didn't eat the cheese that had been cut and spread onto crackers. I did not eat any of the sauces. I feel fine.

Would you have just not eaten? Am I not being careful enough? I did get glutened recently, at a 90th birthday party for my grandad. It was at a country club- we had a private room/private party and the employee assured me that they consulted the chef and the apps were NOT ok, but the meal was. OR it could have been when I hosted a cookout and I ate gluten-free, but served hamburger buns for my guests.

So I am torn. I want to maintain my new energy level (!!!!! I was SO fatigued for FOUR years and feel like I really missed out on a lot a a mom- I am nearly certain it was my 2nd pregnancy that triggered my celiac) but I also don't want to obsess and panic and make myself resentful that I can no longer enjoy gatherings.

What is your policy? And also, how much do you trust that maltodextrin or dextrose or "natural flavors" are ok if the "allergen warning" does NOT include wheat???

[Roda]

You have summed up how I feel in a nut shell. However, I have only been out to eat three times since October. I felt fine, but I don't get symptoms like many others. I have been glutened twice that I know of. The first time I ate at my friends house. She has another friend that is celiac and asked for advice. I'm not completley sure if all of the ingredients were gluten free or not. She also got me a gluten free maccaroon from a local bakery and then put it on top of brownies. Like a dummy, not wanting to hurt her feelings, I ate. That evening I had the most horrible heartburn and rumbling stomach. This was only about a month after being diagnosed. The second time I was eating some coconut macaroons and checked the ingredients. It did list natural flavors and I did not call to check. I ate about a bag+ of the suckers over the course of two days and by the second night I had chest pain so bad it was worrisome. I took a previcid and much to my relief it helped. I had heartburn for several days and constipation for about a week. Either it had hidden gluten in it or it was cc'd. So both times were MY fault. As for the few times I've been out to eat, I have played it pretty safe with salads, steamed veggies and baked potatoes. I never had any trouble those times and felt fine. I was concerned last week because my oldest son's school's second grade was having a picinic. I thought it was going to be a pot luck and was really dreading it. I was not planning on eating anything there. I was thinking how it would suck to have to take a dish and not eat. I was going to pack a lunch for myself. To my relief, everyone was to bring a "picinic lunch" for their own child and themselves, so I did not have to worry about it. Now in July my family is planning a cook out with alot of family members. I am the only one who is following any special diet. (there are a few others that should but refuse to get tested but that's another story ) My brother is a pit master and is going to smoke and bbq all the meat. I have already talked with him and have confirmed that all his ingredients and spices are safe for me to eat. What a relief. I have been planning with my mother some of the other menue items. I told her we could make most things gluten free. The only exception is the macaroni salad. I hate it anyway, so she is going to make it normal for everyone else. I told her I would set aside my food first (and any extras I may want later) before she served anyone else. That way I don't have to worry about getting cc'd from something or someone else. I have also been to my in laws twice since diagnosis and have not gotten sick from anything she has made. She did cook in her pans and I felt ok with it since they were non teflon caflon. Her oven was broke and I had to use her toaster oven for some stuffed clams, so I cleaned out the crums the best I could, washed then lined the tray with foil and placed the food on it being careful not to touch the sides etc. I did not have any problems with that either. So I guess it just depends on how sensitive and comfortable you are in certain settings. I now feel alright eating at the inlaws and will be alright at my parents house. I am not confident to eat at any of my friends houses though and haven't since diagnosis with the exception of the incident I mentioned above. I have had company over a few times though. However, it would be nice to be able to go to some friends house and not worry. But this is not their problem so I take full resposibility. My mom in law has been great even though I know it is an inconvience for her. As for the reception you mentioned I probably would have eaten some of those things too and taken my chances. I guess with some of the foods you mentioned the risk would be cross-contamination. I don't think I get symptoms from very slight contamination, but I probably would if it was really obvious.

[gaingus]

I can honestly say that is a hard one. My wife is really good about making sure what we eat is safe. She has the apps on her iPhone that tells you what is good or not. My parents and inlaws are still learning the basics of what is safe and not. I have been unintentionally glutened by both families but it is getting better.

As far as things I avoid, I do stay away from maltodextrins, I have called a few places and the person I talked to did not know where it came from. I stay away from places that aren't helpful with my needs. I am really careful about what I do and don't eat. I have my own "man purse" that I carry around with emergency food and condiments. It isn't exactly easy, and it is the hardest things I have had to deal with.

A few suggestions I do have. We are allowed to take food that we need to places. It falls under the Americans with Disabilities Act. If you get a chance, check out the book put out by Elisabeth Hasselbeck, she has been through a lot of what you explained and how she made it through some of the same circumstances. She used her kids being so young to take the food she needed into places and acted that she was snacking on what she was feeding them.

There are many different ways that you can come up with to be able to eat. It is really hard, especially when in the back of my mind are the stories of greater risk of cancer (a big issue in my family) and all of the other long term problems that exist when we get too much of gluten in our bodies.

[latteda]

I can honestly say that is a hard one. My wife is really good about making sure what we eat is safe. She has the apps on her iPhone that tells you what is good or not. My parents and inlaws are still learning the basics of what is safe and not. I have been unintentionally glutened by both families but it is getting better.

Can you tell me what those apps are?

[Salax]

I would like to know the apps as well. I find that I really use my iPhone alot when unsure of food since I can just research right then and there to see if it's gluten-free or not. It is very helpful in many instants.

[happygirl]

This is one of the apps for iPhones or other software: Open Original Shared Link

Maltodextrin is generally gluten free....it is made from rice, potato, or corn. If it has wheat in it, it is required by law to be listed.

Dextrose is sugar and is gluten free: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

These companies have policies of clearly listing gluten, so you don't have to call about natural flavors, etc. Remember that per the FDA Allergen Labeling Law, wheat cannot be "hidden."

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Great info to get you started: Open Original Shared Link

[lizajane]

well just kidding.

because i was glutened at some point over the weekend.

it isn't nearly as bad today as it was last week when i was up for 2 hours in the middle of the night and had the pain you described. but i am definitely not right. i realized earlier i had the brain fog! i HATE the brain fog! (as well as other issues- the "bubble" in my throat feeling, which i suppose is heartburn and a puffy tummy and sleepiness) so not worth it. i will be more careful.

but i would really like to hear more folks weigh in on the issue.

thanks.

[Jocammie]

I have been off gluten for about 5 months and I have yet trust any restaurant that doesn't seem really aware of what gluten is. The only places I have eaten out at recently are Outback and Garlic Jims. It seems when I try other restaurants or friends cooking it always backfires. One time one of my friends went to a lot of trouble to make me a gluten free cake but I got sick. I later found out that the sifter she used to mix the gluten free flours was the same as as the one she used on wheat and I'm sure there was flour left behind form the last time she baked. I think part of the reason I end up having trouble eating out is I tend to be a quieter person who doesn't like to cause a lot of trouble. I will try to tell people what I need but I don't like to sound too needy and in return people don;t take me as seriously.

I am going on my honeymoon in July and I am paranoid about so many days where I'm not cooking. We are going in in all inclusive resort in the Dominican Republic and I emailed the manger who assured me I just needed to meet with their director of food upon arrival and they would be able to provide me all gluten free meal. I'm glad they seem so accommodating but it is still a big worry to be in another country for a week with no control of food.

I have heard that there are supplements that you can take that will help you feel a bit better if you accidentally get some gluten and I'm hoping that might be something I could take with me to be prepared. Has anyone heard of these or had any luck with anything offering relief in accidentally gluten cases ?

[lovegrov]

"As far as things I avoid, I do stay away from maltodextrins, I have called a few places and the person I talked to did not know where it came from."

If they have the package for the food all they have to do is read the ingredients. If the maltodextrin is made from wheat (which is EXTREMELY rare) the wheat must by law be listed in the U.S. And it doesn't matter where the product comes from.

richard

[gaingus]

My wife has an app called food additives and it cost her something like $5 for it.

I do not trust maltodextrins myself. If it is made here in the states it is the other ingredients. If they import it from some where else there is no guarantee if it is made from wheat or not. Another thing is it can also be made out of rye or another unsafe grain and it doesn't have to be labeled.