Everyone Does Gluten-Free Differently

Hopefully we can all agree on the fact that wheat, rye and barley are off limits on a gluten-free diet.  Beyond that, and even exactly what that means, quickly becomes a grey area.

Gluten Free

It has to be that way.  Our lives are all different.  I don’t have a completely gluten free house, but I totally respect those of you who do.  I do have strong opinions on some things such as cross contamination, and I think it’s important to help educate other people about such things. But I know that everyone will not agree with me.

In recent weeks I have spoken to two people who mentioned Domino’s gluten-free pizza.  Neither of them knew that no precautions are taken to avoid cross contamination.  One of them was okay with that, the other was not.  It’s their choice to make, but I explained the situation and what I thought of it.

ca. 2001 --- Businesswoman  in Front of Doors --- Image by © Royalty-Free/Corbis

Information is essential, but in the end we all make our own decisions. That’s important to remember when we communicate and interact with other gluten-free people.

When eating outside my home, sometimes the people who are the most insensitive are those who are actually gluten-free.  Maybe insensitive is the wrong word, but they impose the decisions they have made about what’s okay and what’s not on me.  They assume that I do gluten free the same way they do.

Someone who knows very little about it is less likely to assume anything.  The problem is complicated these days, though, since the gluten-free diet has become so popular.  More and more people who are not on the diet think that they understand it. Sometimes they do.  Often they don’t.

friends at restaurant

I’m not here to complain.  I’m here to get you thinking.  How do you respond to other people you know who are gluten free?  Do you assume that they handle the diet the same way you do?

When eating with another gluten-free person, whether in a home, at a restaurant, or at a social event, it shows respect to ask them questions about what and where they feel they can safely eat.

Do you agree?  Let me know what you think.

If dealing with gluten-eating people is a challenge for you, Shirley has compiled lots of helpful information in They Just Don’t Understand—Dealing with Gluten Full Friends and Family Part 1 and Part 2 (strategies).

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Comments

  1. Jennifer says:

    We live overseas and in our Sunday group there are five of us who eat gluten free; one has Celiac Disease, one has the dermatitis herpetiformis, two have gluten sensitivity and one has a anaphylactic reaction to wheat.
    That said, when we have pot-luck meals together we always let each other know what is in our recipes. I use oat flour a lot, but some of these folks don’t, so I let them know what is in each item so they can choose whether to eat or not. More often than not, I make what all of us can eat. We all know each other so well….that we know who can eat what now.
    I’ve also learned to explain what is ok for us regarding gluten free; b/c we’re in Asia there is soy sauce everywhere…with wheat in it. We’ve had to decide what works for us and what doesn’t. I let folks know that this is “for us” and may not apply to all gf eaters….

    • Thanks for sharing, Jennifer. I’m sure it’s nice having five of you in the group and knowing there will be something you can eat besides what you made.

  2. Christy says:

    My good friend was diagnosed a little over a year ago. In the beginning she would take small bites of things she knew weren’t safe because she craved them. Recently she has gotten better and said she is finally accepting the GF diet. She still takes more risks than I do but when we are out I always joke she’s the more “adventurous” Celiac. I try to encourage her to be strict and always share my homemade GF muffins (she barely cooks let alone bakes) etc. to show her it’s not so bad but beyond that it’s her life and I have my life to worry about.

    • I had an uncle like that. He had been eating a little gluten occasionally for years before I was diagnosed. I tried to help him understand, but he was not going to change his ways. I do think it’s important to communicate the possible health consequences to such people. Don’t give up on encouraging her to be more careful!

  3. Linda, this is a great post. All too often, I have gluten-free folks preach to me about how I eat is wrong. I have been a diagnosed Celiac for 30+ years and feel that I have my gluten-free eating down to a science. “Our lives are all different.” is a great quote and very true. Thanks for a great post!

    • Erin, I’m glad you enjoyed the post. There are not many people who have been gluten free as long as you have. I’m sure you do have it down to a science by now. :)

  4. Actually, I assume another person’s reasons for going gluten-free AREN’T the same as mine. I probably start with that assumption because using the gluten-free diet has had different benefits for myself (celiac) and my daughter (ADHD). I volunteer in an organic food store that specializes in gluten-free options, and I love hearing customer’s varied stories of how they came to a g-f lifestyle and what it has meant for them. I find it amazing to see the diet working in so many different ways.

    As to how I’ve dealt with gluten-full folks, well, I’ve made some mistakes. I was just SO excited at how the diet changed my life that, initially, I went on and on about it. I know I hurt some folks’ feelings, and I’m so sorry for that. My goal now (after 1 1/2 years g-f–also soy-free, dairy-free, vegetarian, and now processed sugar-free) is just to encourage others to strive to be as healthy as they can be, whatever that may mean for them with their unique physical makeup. I hope my own story will give them hope to find their own path to well-being.

    • It’s hard not to go on and on about something that has changed your life and health so much. Knowing that many other people would be helped by it too makes it hard not to push it on people. We have their best interest at heart, but pushing is never the way to go. It sounds like you have a great approach–encouraging others to be as healthy as they can be.

  5. I don’t know anyone else who is gluten free. Very few people in my area even know what it is. My friends don’t understand why I can’t just pick the croutons off the salad or take the burger off the bun. The restaurants here are just as clueless so I’ve given up even trying to eat out for the most part.

    • Melisa, Just educate them! Call before you go to a restaurant and tell them that you are allergic to wheat and you can’t have the cross contamination; by law they are suppose to follow your directions; they do not want bad business. Look into your local support group in Celiac. Ask the local, hospital or Human services to find this out. Join blogs, read all the time on your new life. I didn’t have the resources either. But I had the computer and I talk about my new life to everyone. Facebook has a support group for us. It shares all our problems that we have and finds that like. https://www.facebook.com/groups/2204723398/ Is the group. It has over 4,600 people in it and growing more from around the world. You would be surprised that there is another person close to you that has this celiac disease. In my small town of less then 4000 there are at least 25 of us. So don’t give up, OK!

  6. Great Article! Everyone should read it!
    Thank You!

  7. Claudia says:

    I found out that I have Celiac Disease about 6 weeks ago. When the doctor told me that I had a flat biopsy that strongly suggested Celiac, I was shocked. He told me it was genetic/hereditary. No one in my family has had any autoimmune disorder. I was somewhat relieved and now I knew why every time I ate wheat, rye, or barley I did not feel good. I feel that I have lost another piece of my autonomy. A little over 3 years ago I was on the Atkins Diet. I only went off at the urging of my son who thought that I was too skinny at 137 lbs. and that Atkins is a quack. But, I felt better eating a low carb lifestyle. Only when I ate carbs did I not feel good. And what is worse they symptoms were vague. I am glad that I found out. I notice if I eat something that has been cross-contaminated, I am sick for at least 4 days. So I have to follow the plan very strictly. I have to say that I hate it and it has turned me into a neurotic—at least that’s how I perceive it. I don’t shove my ideas down other people’s throats, but try to keep my own counsel about it and keep myself healthy.

    • Claudia, the diet is still very new to you. You will probably feel less neurotic as time goes on. And there is nothing neurotic about trying to keep yourself healthy. The good news is that you have an answer and your body is letting you know when when you consume something that’s not good for it.

  8. Erica W says:

    You are right on!!

    We have also recently discovered a new allergy to something & are trying to track down exactly what it is… I **think** it is food dyes… so frustrating. We barely eat anything processed or anything out of the house, so I am hoping to be able to figure it out quickly. Grandma came into town & bought “treats” that were GF but had dyes & we drank “iced tea” away from home, that I am assuming must have had dye in it because the other ingredients should have been safe and have not ever caused a known reaction … I have to see which dyes are in the tea & compare to the treats from grandma. 11 YEARS of off & on sore throats were actually NOT sore throats, but an allergy/ sensitivity?!? SO frustrating!!

    Even when you THINK you are safe by eating GF, you are still learning & may still be exposed to another allergen… I try to be very sensitive to people, but I have been shown a lot of ignorance about GF eating… like someone tried handing my DD a hot dog that the person had removed from a bun (right in front of us, which I was glad to know it was contaminated) & then proceeded to put it on her plate… I tried to explain that it was cross contaminated (as was her plate) & I got the nastiest scoff… I didn’t even delve into the fact that the GLOVES they were wearing were ALSO CONTAMINATED since they were touching hot dogs IN buns while wearing the same gloves they handled ALL of the food.

    By God’s grace someone saw me & my DD on the verge of tears (she had CLEAN gloves that she put on right then just for us) & handed us non-contaminated hot dogs (we won’t get into how unhealthy they are cross contaminated or not… LOL) so we were able to eat still. I believe THAT mom only “got it” the GF & contamination situation because her son has a peanut & shellfish allergy.

    Anyway, no, some people just do NOT get it… no matter what… keep up the great work!

    • Taking a hot dog or burger off a bun is something people have been doing for years. I think more of them are educated now, but it still happens and is very frustrating. I’m glad someone came to your rescue! Thanks for sharing. I hope you figure out your other reaction soon.

  9. Tina K says:

    It depends on their reasons for being gluten-free, I suppose. If a person is eating gluten-free out of choice, meaning they are making the dietary change because they think it is healthier, then maybe there isn’t reason to be a vigilant. If a person is eating gluten-free because they have an allergy or have celiac, then they should make sure that every precaution is taken to insure their meal is gluten-free (including cross-contamination). I have no issues with gluten myself, but do have multiple food allergies (I carry an epipen with me for this reason). My husband doesn’t eat gluten because he’s found he doesn’t have digestive issues when he eats gluten-free. Because of my need to be vigilant about what I eat, I am a pro at questioning wait and kitchen staff about what is in foods and if the kitchen can make sure that cross contamination doesn’t occur Of course, a huge part of this is weeding out places that would be problematic in the first place – for instance, avoiding Asian or vegetarian food restaurants because I’m severely allergic to soy and nuts, or avoiding Italian restaurants because of my allergies to tomatoes and garlic. I find most restaurants now are willing to work with customers in regard to food allergies and intolerances. I do think caution should be taken, though, now that gluten-free diets are de rigueur. I’m sure a lot of restaurants are jumping on the gluten-free trend more than are concerned with customers’ health. If there is ever any doubt about how seriously a restaurant takes my allergy issues, I choose to go eat somewhere else.

    • Tina, as you said, people have different reasons for being gluten free, and that is exactly why I think we need to be considerate of each other. I’m especially concerned about those who do not have celiac or a strong gluten sensitivity or allergy. They can assume that their laid back approach is okay for everyone. With your food allergies you have to be extremely careful, and people should be considerate of that. I agree that if a restaurant doesn’t take you seriously, eat somewhere else. Thanks for sharing your thoughts.

  10. I know other people who have had to go gluten-free, but the only person I really trust to make me “gluten-free” food is my best friend. She and I are gluten-free for the same reason (it affects our entire digestive process in a very painful way) and we are very wary of cross-contamination. In talks with other gluten-free people, they don’t seem to be as aware or as concerned with being contaminated which makes me question if they really need to be gluten-free in the first place. Maybe they do have a problem, but just have a much, much higher tolerance than I do. So I don’t judge if someone else is trying it out, but I won’t necessarily trust their food…

  11. I’ve been gluten-free for about 5 years now and I still feel very self-concious about it. When we go out, I try to make it as easy on everyone else as I can. Sometimes that’s not good for me. Lately though, my sweet husband asks all about gluten if we are out. He asks what they make their recipes with ect. I think he’s tired of me coming home and paying for being nice and not making waves.

    I guess when it comes right down to it, I haven’t found anyone that I really trust to make things totally gluten-free for me. I’ve found so many people that think they know what it means, but they really don’t. So if I want things truly gluten-free, I stay home and make my own.

  12. Well said! I think that people who need to be completely gluten-free with no cross-contamination, like me, have “food fear.” It’s hard to forget what our bodies go through when we get any gluten. It probably makes some more hyper-reactive when it comes to the issue of being gluten-free. But, you are right, we all need to do the diet that is best for us and support, not judge, each other.

  13. Linda, this post is such a great discussion! And thanks so much for the link love. :-) We really need to keep this in mind for friends, family, restaurants, etc. It goes back to the recent discussion related to Domino’s “gluten-free” pizza on the fact that gluten free should mean gluten free. I am glad that you are educating others on the fact that Domino’s exercises no cross-contamination controls at all. That fact keeps getting lost in the publicity and your friends’ opposite responses are the perfect way to make your point on every individual doing gluten free differently. I also love the discussion in comments. While we can’t force folks to live 100% gluten free (nor should we necessarily), it is super important that we know when folks get/don’t get/or don’t follow 100% gluten-free protocols to protect our own selves when we are 100% gluten free. But even the 100% gluten free is “discussable” as we know that there are some products that some of us will not consume based on previous reactions (in many cases, despite a gf label, and sometimes despite certification), but others consume freely and report no issues. Anyway, this is a huge topic and I appreciate you broaching it with us!

    Shirley

    • You’re right that 100% gluten free is discussable when it comes to processed foods. After all, 20 ppm or 10 ppm is not 0 ppm. Heather’s choice of avoiding all grains and processed foods is the closest one can get to 100% I think. That’s a hard choice to make, though. Thanks for weighing in, Shirley.

  14. Vanessa says:

    Our gluten free experience has been short. I thought my hubby needed to be gluten free because of his IBS. So I put our family of 5 on a gluten free diet. The hubby fought with me about it because he was unable to have beer. I finally threw in the towel because it is so expensive and I had to learn a different way to cook.

    After we stopped being gluten free my 11 yr old daughter was incredibly sick in just a few days. I was overwhelmed with guilt because I was the reason she was sick. I told my hubby we have to be gluten free for her.

    It is hard being 11 in the middle of wheat country. We live in a small community and many of our family friends are wheat farmers. Some understand some have trouble with her diagnosis. She wants to fit in as much as possible, and when they go on field trips, sometimes she will eat pizza and say she would rather deal with the sickness than deal with being made fun of for bringing her lunch.

    I have become pretty creative with our meals. I do not want her to feel left out. This past week our church had VBS and we fed the kiddos supper every night. Since I was a worker I knew what we were having so I made every thing at home for her. However, we had an incident with finger paint. I did not know it had wheat in it. She was sick for several days.

    …..Did I get off post??… Sorry… We do not eat out often. When we do we KNOW if there is a chance of cross contamination. I prefer to make every thing from scratch. However, before we were gluten free we hardly ever went out to eat, I made supper every night too. We are old fashioned that way =]]

    • It certainly would be hard living in wheat country, but I bet there are a lot of folks there who would benefit from being gluten free. It breaks my heart to hear that your daughter would rather deal with being sick than be made fun of. Unfortunately, being sick is not necessarily the only side affect. There can be other consequences such as triggering another autoimmune condition. I’ve never had to parent a young child who needed to be gluten free. I’m sure it’s hard.

      Like you, we didn’t go out to eat much before I went gluten free. You’re not the only old fashioned one! Thanks for sharing.

      • Vanessa says:

        After 3 months of being gluten free, my daughter gained 15 lbs, her eczema cleared up, and her skin color was beautiful. She has always been ghostly white almost sick looking. In the past she would scratch the backs of her knees until they would bleed.

        She is beginning jr. high this year. I know the peer pressure will be difficult, but I pray she makes good decisions. Over the summer I have learned how to make GF bread and some other yummy goodness which hopefully makes up for taking her lunch to school.

  15. The point you have made is very true, and very important for people to understand. Everyone does gluten-free differently, and everyone has to decide what works for them.

    We eat an unprocessed diet, and we have found that eating “gluten-free” processed foods does not work for us. We’ve also eliminated all grains. We have several gluten-free friends, but they eat differently and include many packaged foods, gluten-free grains etc. That is what works for them.

    I do find it hard at times, because I see that some of my gluten-free friends still have some digestive problems or other symptoms. But if I do mention something about their diet, I do it kindly and with respect. I might suggest reading an article about cross-contamination, or let them know about our experiences with cross-contaminted products, even vitamins.

    Some people are unaware of the severity of cross-contamination, so I think it’s important to keep an open dialogue within the gluten-free community so that there’s always a good flow of information for people to digest and see if it works for them.

    • Heather, I can see where your situation might be difficult. Some people wouldn’t understand your need to eliminate processed foods and grains. It sounds like you have a good attitude toward the issue. Suggesting articles to read is a great way to go.

    • Heather,

      Like you, I prefer to eliminate all grains and processed foods. It makes it hard sometimes when I’m so tired, I can barely think, let alone prep food. I’ve started making some of our favorite entrees or meal-starters and keeping them in the freezer so that I can have a meal ready in a very short amount of time for those days when I’m just too done in to cook. All I have to do is add a salad and/or veggie, and I’m good to go. Now I can have fast (quick, easy, minimal effort on my part) food that I am certain is GF. And it’s so much healthier for me (and my wallet!!)

      • Keeping all or part of a meal in the freezer is a great way to go. I’m glad it’s working for you. Thanks for sharing that.

  16. I eat gluten free due to DH…after fully recovering from those symptoms, there’s nothing that would make me go easy on my gluten free lifestyle. That said, I don’t tend to watch as closely for cross contamination in restaurants as I should, which I’ve paid for with blister flare ups and intense stomach pain. My husband is good about following up on any comments that I might forget (change their gloves, use new pans, etc) and has been known to make us leave a place that is unaccommodating. I’m learning to stand up for myself more and we go to the same restaurants repeatedly if I have good luck…it makes it easier on me and my family. Also, while I’m the only one that has to eat this way (and the only one with food allergies in general), the only item in our house that isn’t gluten free is their bread. They are very aware of cross contamination, even going so far as to designate the toaster as “mine” – they toast theirs in the oven if they want toast – and having their own peanut butter jar. I try to educate people as I learn, which has made me the go-to person to ask among my friends and family, but I don’t try to be overbearing. I just know what works for me.

    • I’m not always great at speaking up for myself either. Like you, we tend to go to the same restaurants where we have a good track record. It’s so much easier. Thanks for sharing with us.

  17. Funny to see this post today, I was out w/a group of friends last night & we were talking about this exact same topic. One of the women was new to gluten-free & hasn’t done much research on it, but was recommended by both her primary & her son’s pedi, because the son was just diagnosed w/PPD (autism spectrum). I am gluten-intolerant, and another woman has Celiac. I seemed to be the most careful out of the three, asking out waitress to let the kitchen know, keeping my food separate at home to avoid cross contamination (different peanut butter, fluff, butter, etc.) Different shelf in oven, different pots, etc. It was very interesting to see that some are not that careful, or didn’t even know to be that careful.

  18. Jeanne Leder says:

    I have stayed away from conventions that I really wanted to attend, just because I knew my diet would be a problem. I hate that!

    I have a friend in another state, met her when we lived there, who had CD. I didn’t know about the diet then. She always would tell me that she would “cheat,” by eating things containing gluten. When I was diagnosed in 1983, we would compare notes, because we even had the same doctor. She was still cheating, on the diet. I never could understand that! I have to admit that I didn’t have much patience about it, and at times just didn’t talk about it.

  19. I am violently allergic to all bovine products and I’m sensitive to gluten (the luck if the Irish!)
    I totally agree with your position regarding cross contamination….it’s the main reason I have set up my own artisan bakery….I was sick and tired of being sick and tired due to a lack of knowledge / understanding about cross contamination.

  20. Linda, this is wonderfully written. Just as we all ate differently before we found the underlying cause of our illness, we do the same after. I have friends who rely heavily on processed gf foods and those who don’t. I have friends with Celiac (diagnosed well before my own discovery) who asked no questions (and still don’t) when we go out to eat. I don’t judge them for that. If that’s how they want to live, it’s their body and their choice. I can’t make them change the way they eat out even if it means I’m the “difficult” one in my circle of friends (and family). And I’m okay with being the difficult one when I have to be .

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