They Just Don’t Understand—Part I: Dealing with Gluten-Full Friends and Family

dealing with friends and family with gluten free

 photo credit:  Flickr emmahassard

 

Do you have family members and friends who just don’t understand living gluten free? As in why you eat gluten free, what gluten-free food actually means, how one’s health can be impacted by gluten, and more? The Family Who Doesn’t Understand was the title of a post a while back by Chris Guillebeau. It’s one of the Top 10 posts on his blog, The Art of Nonconformity. Guillebeau also wrote a book by the same name (disclosure: I am an Amazon affiliate). On the surface, his blog, book, and this specific post have absolutely nothing to do with celiac or gluten intolerance or living gluten free. His blog is about entrepreneurship (loosely) and living your life on your own terms, but I think the latter actually has a lot to do with living gluten free.

“Living life on our own terms” and doing so for our safety and well being is definitely what most of us are doing by living gluten free. Of course, I realize that some of you, especially newly-diagnosed folks, might protest and say that those are not the terms you chose at all because you feel victimized by this turn of events in your life, by having to live gluten free. While we’re not specifically focusing on that subject today, we do have a great discussion on those feelings in Grieving Gluten:  The Five Stages of Loss of Gluten Plus One.

But how about the term nonconformity, and practicing the art of noncomfority? While living gluten free is getting much more buzz in the media of late, I believe that those of us who are gluten free are still very much “non-conformists” in today’s society. And from Guillebeau’s The Family Who Doesn’t Understand article, I couldn’t help but draw parallels between what he shared and what we—the gluten free—deal with on a daily basis and how we can better handle the “friends and family” issues. “Friends and family,” of course, is a phrase that immediately brings to mind Verizon’s calling plan to mind for most of us. Oh, if only it all were as simple as signing up for a new cell phone plan or adding and dropping folks to/from our lists. Although maybe some “adding” and “dropping” is exactly what we need to do sometimes. We’ll talk more on that in a minute.

Guillebeau shared that a good number of his followers come up to him at book signings and tell him that they are buying his book to give to friends and family members who “don’t understand.” Ahhh … that really sounds familiar, doesn’t it? Both the friends and family who don’t understand, and us attempting to educate/sway them with materials. We’ve all printed out/clipped articles and shared books with friends and family, haven’t we? We’ve gotten excited when there was a segment on celiac/gluten issues on television and suggested that they tune in. We do all those things for a number of reasons. We want them to “get” us, to “get” our diet. We may feel hurt, sad, upset, and more—even devastated—when they don’t. Hence, the photo at the top of this post. It may seem like an overdramatization, but from the numerous emails I get from readers, it is not. In many cases in our dealings with friends and family, we want them to “get” how celiac/gluten intolerance may be affecting them as well. We often see our own symptoms and/or the standard signs of celiac/non-celiac gluten sensitivity in them. After all, these are genetic issues so it makes sense that we want family members to see if gluten is an issue for them, too. That won’t be the focus of today’s discussion either, but it is definitely part of the understanding that many of us are seeking.

Let’s examine Guillebeau’s article and see what we can glean from it on dealing with friends and family. Here’s one of his statements:

“If you want to influence your friends and family, you may be able to lead the way through your own actions.”

I can see the eyes rolling and hear the grumbling now, because that’s far easier said than done. From my own personal experience, I know that there are definitely family members and friends whose actions I will never enlighten on why I’m living gluten free, why I must eat 100% gluten free, etc. And you probably have come to that conclusion for some family and friends yourself. Worse … some of them may still be trying to influence you to “just have a little” … “one time won’t hurt you, right?” … “you can eat the pie filling and leave the crust; I don’t mind” … or maybe “I really think you have gone over the top on this gluten-free thing”. But just maybe there are some individuals in your life who will see that you have become a different person by living gluten free … a much healthier person … a much happier person. And perhaps they want that for themselves, too. Lead by example, not words. Note that it was only after I gave up on nagging Son on his need to eat gluten free that he got tired of being ill and started eating gluten free (and more free) himself.  Maybe some of these friends and family while continuing to eat gluten themselves would do anything on Earth to keep you from getting “glutened.” That was the case with Son. When we’d eat out together, when it was just the two of us and before he was gluten free, he’d always be the one giving the restaurant staff extra instructions firmly and politely in hopes of keeping me safe. So please know that your friends and family could be paying much more attention than you think.

As I’ve stated, there’s a real tendency to feel like an ongoing victim when family is not as supportive as one would like and to react very poorly to them. Don’t get me wrong … I’ve been in these situations, too (as I shared here in my post on spelt), and one must clearly ensure safe food at all times. “Making nice” is not an option if it that means knowingly consuming gluten-full foods or even taking a risk of consuming gluten. Often one has to assert one’s self, even if it makes for an uncomfortable situation. However, similar to what I shared in my post on eating out, one also has to remember that most of these family members are coming from a place of ignorance. And that’s a place where we all were before we embarked on our own gluten-free lives. Do you remember when you knew nothing about gluten? Chances are you came up to speed pretty quickly because you were forced to do so because of your health situation. Your friends and family are simply not in that place. Even if they are supporting you, they simply cannot know fully what it means to live gluten free.

Some other comments from Chris Guillebeau’s article that stood out for me as applicable to our situations:

“Or you can put it in perspective for them: I’m doing this because it is important to me. I’m willing to give up other things to make it work.” 

“More often than not, they’ll get used to it over time. You may always be thought of as the black sheep, the strange one, the outlier. But you’ll eventually earn your right to freedom and maybe even some grudging respect.”

One’s health is, in a word, vital. Emphasizing the health criticality can help open eyes and promote acceptance, if not full understanding. Most of us have seen our family members regard as us “black sheeps” to some degree, but many of us have also seen acceptance over time. Plus, how many of you have had friends and family diagnosed with their own gluten issues later and suddenly we are revered as the trailblazer, the expert?

I think there are four main categories that apply to our gluten-free friends and family. While labels often have a negative connotation, and rightfully so, labeling out friends and family this way “in our heads” can help guide our own actions and more easily allow us to stay both safe and sane in our relationships with them.

~ Ignorant, but Well-Meaning

These folks means no ill will at all; they are simply ignorant about what gluten free means. To be clear and reiterate a bit, “ignorant” is not a bad word here. Ignorant simply means unknowledgeable. I have many family members who fit into this category. They have the best intentions and mean no harm, but quite frankly, are clueless about gluten. Again, remember when we first went gluten free? We, too, were ignorant. I’m going to call myself out in this category as I used to be in this group. Big time. In fact, I might have been qualified to lead this group. I remember when a friend who had recently been diagnosed with celiac came to one of our biennial Valentine’s Day parties. This particular party occurred many years ago, long before I was gluten free and, therefore, also long before I knew anything about gluten. It was this friend’s wife who was my co-worker and good friend (and still is today).

She had mentioned that he drank potato vodka because it was gluten free and grain free (it wasn’t widely known/accepted that distilled alcohol was gluten free then). So when they arrived, I welcomed them and ushered them to the bar. Then I proudly announced that I had purchased potato vodka for him. I remember feeling so considerate and proud of myself that I had thought of him when making my bar purchases. However, here’s the kicker … and it’s a huge one … I had not taken into consideration one single food item that he could eat. Not one. My friend had brought her famous homemade salsa and corn tortilla chips that she had made and deep fried herself (the combo is still her most loved and most requested party contribution), so looking back I can only assume that he enjoyed her salsa and chips with his vodka cocktails. I’m pretty sure there was a veggie tray, so he might have enjoyed a few carrot sticks with his salsa and chips (oh joy) but that’s probably the only other menu item that would have been gluten free. Maybe he ate at home before he came. I hope he did. But the point is that I was simply clueless back then. I wasn’t trying not to accommodate him; I just didn’t know how to do so properly. I don’t remember his wife making any suggestions on my party menu, but truthfully, she probably did. Most likely, I just didn’t understand and was also too preoccupied with my party plans. Later after I was gluten free, I baked gluten-free cookies and treats for him upon occasion and served 100% gluten-free food at our parties and he loved the treats and the fact that I’d gone gluten free because it meant all my party fare was safe for him to eat, but I still feel guilty that I did not provide great gluten-free food for him at that particular party.

~ Supportive, but Not Quite “There”

These friends and family members want to provide gluten-free food options for you when they host a get together. They ask which restaurant works best for you before they make a reservation for a family celebration or girls’ night out. BUT … they probably don’t remember that they can’t put your leftovers in the same “to go” container with the piece of gluten-full fried chicken that they want to send home to your hubby. This very situation happened to me the other day. I took the proffered package and promptly handed it off to my gluten-full parents as I could not eat the contents. I didn’t say anything to my friend as it was not the time or place to educate her. They also probably won’t remember that they can’t stick the knife back in the mayo jar after they’ve spread mayo on their bread and then offer that same mayo to you to make your sandwich on gluten-free bread or even remember that mayo can’t be used when making chicken salad for you. My advice is to appreciate these types of folks who do try to support you in your gluten-free living, keep educating them (when possible and in a kind, loving manner), and, of course, still be very vigilant and cautious if they are doing any food preparation/packaging for you.

~ Totally “Get It”!

The number in this group is likely to be a small one. It may include your spouse/partner in life. It may include a parent, sibling, child, or one of your best friends. The likelihood of a friend or family member being in this group goes way up, of course, if the individual is actually gluten free. These people feel like gifts in our lives. We can relax and enjoy good, safe gluten-free food and great times with them! Fellow gluten-free support group members are usually in this group and may become closer friends and offer more support than gluten-full friends of many decades. But a word of caution … there’s a small faction of this group for which the “totally” descriptor may be too generous. Do their standards for living gluten free match your own? Are they really 100% gluten free? Not to be a party pooper, but be cautious if you know their standards for living gluten free are different than your own. The gluten-free friend who shares a toaster with his gluten-full wife or eats the tortilla chips from the shared fryer at the local Mexican restaurant is actually in the Supportive but “Not Quite There” category. That “Not Quite” factor can be the difference between staying 100% gluten free or getting “glutened” if you eat food these folks have prepared or purchased.

~ Refuse to “Get It” (or Deny They “Get It”)

Hopefully, this group is not the most populated group in your life, but even when there are just a few friends and family members who “refuse to get it,” they can be very troublesome. These folks are convinced you have gone off the deep end or are part of a cult, one where the “Kool-Aid” beverage of choice is—at a minimum—gluten free. These folks will look at you like you have grown two heads and hold their babies close to their chest when you’re in their vicinity. They may even be hostile and belligerent towards you. They may stop inviting you to their events because they don’t want to deal with your food issues … even if you are the best guest in the world (you don’t make a big, loud deal out of the fact that you eat differently, you bring your own gluten-free food, you keep yourself safe, but do it in a nice way, etc.).

If the folks in this group are folks you rarely see and you don’t spend too much time caring what they think, it’s unlikely they’ll rattle your cage too much. But if these folks are ones who are near and dear to you, being treated this way by them can be a painful blow, one that you feel like you might never recover from. When close friends and family are in this group, there’s no doubt about it, it’s tough. You may feel abandoned. You may feel betrayed. And not just a single time, but over and over again.

 photo credit: Flickr greeneydmantis

A dear friend of mine continues to go to group events hosted by her best friend who serves nothing but gluten-full food. This situation occurs repeatedly even though my friend has been gluten free for at least a decade now. Most recently, her best friend left her off the guest list for an annual party she hosted. You may be asking how could that person be her best friend? She has asked the same, but is so hurt she doesn’t know how to approach it. So she endures the situation, but is hurt over and over again. Perhaps that friend needs to be taken off her “friends and family” list. Certainly, she should try having an open conversation with her friend to see what is going on. It is tough though as both parties may get defensive or other emotions come into play and what was planned as a calm conversation quickly escalates into anything but.

Sometimes our friends and family act this way when they see their own lifestyles threatened. They may actually understand far more than we think, but are unwilling to deal with and accept the change in our situations. Maybe there’s also some grief and/or anger on their part. We’ll call the dear friend, whose situation that I just talked about, Bonnie. We’ll call her friend Joan. Maybe Bonnie’s friend Joan is feeling a loss because of all the food events that she and Bonnie used to share … their meet-up for morning coffee and bagel, the occasional get together at the local tea room that would be their special treat, and so forth. Maybe Joan doesn’t want to deal with the situation because she fears that she has gluten issues herself. She doesn’t want to talk about gluten free, think about gluten free, etc. because she’s afraid she’ll have to face her own need to get tested and potentially go gluten free, and she simply refuses to do that. So instead, she’s simply not supporting the need for Bonnie’s gluten-free lifestyle.  But what can Bonnie do in response? Maybe Bonnie can get past Joan’s treatment of her because she sees that Bonnie is struggling. Maybe Bonnie cannot. Or maybe Bonnie can try writing Joan a thoughtful, heartfelt letter on the matter. Putting our thoughts to paper can sometimes allow us to present the situation more factually and while our feelings will still be shared, some of the emotional intensity of the situation may be removed and, thereby, prevent the response from being as incendiary as it might have been if we’d tried to discuss the issue in person. It’s also easier to talk to a person in writing sometimes because we don’t have to actually witness their reactions. Maybe Bonnie will ultimately have to pull back from her friendship with Joan. She will have to decide which path she’ll take, but admittedly it’s unlikely to be a straightforward or easy one.

hurt, upset, sad, living gluten free with gluten-full friends and family

 photo credit: Flickr Tormol

However, add a gluten-free child to an equation like Bonnie and Joan’s and things get much more complicated, or in some cases, easier—in the sense, that you can more readily find the strength to act. Those of us who are willing to still socialize with friends and family who won’t consider our own needs may not be able to get past these same individuals refusing to consider the comfort and safety of our gluten-free children.

unhappy, sad, betrayed, living gluten free with gluten-full friends and family

 photo credit: Flickr majorbonnet

Here’s the thing … at the end of the day, you know what’s right for you and/or your family members, as far as staying 100% gluten free. You have to know which battles to fight and which ones to walk away from. Most of us do not have the extra energy to invest in folks who will never be supportive of us in any way. Honestly, it doesn’t matter what the subject matter is, none of us has to be a victim to such folks. And more importantly, some of the folks we are concerned about—even the ones who often ”rile” us the most—have little impact to our lives and have their own “issues,” too. That co-worker who thinks you’re weird; he’s the same guy who doesn’t allow any food or beverages to be eaten in his car and wipes his boogers on the carpet in his office (true story). That puts the situation in perspective a bit, don’t you think?

As that old saying goes, “Everyone is normal until you get to know them.” Being normal is highly overrated anyway and being gluten free and eating real food that’s naturally gluten free (the gfe approach) is becoming more normal every day. So some folks who currently fit into the Ignorant but Well-Meaning category will make the transition to Supportive, but Not Quite There and eventually they may even make it to Totally “Get It”! group. Again, that last group will have only a few members. That’s why it’s important to also associate with others who are gluten free, take part in a support group (real or virtual), and so forth. You might think that you can do this on your own, without any support from others, and maybe you’re right, but most find that support from others who do understand is invaluable.

But most of our friends and family who don’t understand should not be dropped from our “calling list.” For the most part, we have to put yourself in others’ shoes and remember that we didn’t “get it” to begin with either and even with those individuals, there are still lots of ways we can spend time with each other comfortably and safely. How exactly? Well, I asked some of my gluten-free blogger friends to share their input on this topic, too. We address the emotional aspects of these situations as well as share some actionable tips for dealing with those who don’t understand in They Just Don’t Understand—Part II:  Strategies for Dealing with Gluten-Full Family and Friends. Don’t forget to also stop by on Tuesday for the May GFE Virtual Gluten-Free Support Group. Well, hopefully, you’ll be here for every new post. You can subscribe to them all here.

This post is linked to Allergy-Free Wednesdays.

Shirley
Not just gf, but gfe!

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Comments

99 Responses to “They Just Don’t Understand—Part I: Dealing with Gluten-Full Friends and Family”

  1. Vicky on May 6th, 2012 1:09 pm

    Such great points Shirley! Your phrase “you can eat the pie filling…” reminded me of something my late mother-in-law said when we visited. She never understood what being a vegetarian is and she served cheese and ham sandwiches and stated we could take out the ham! And the point about the knife in the mayo strikes a chord …. two pots of jam, two containers of butter etc etc..in fact when my son was living at home it was three pots of everything lol – one gluten free, one SCD and the other for my gluten eating husband!

    None of my family understand what gluten-free means so we take all our food to family gatherings. When I have people round, I always make sure I cater for all diets, this can be very stressful..keeping everything separate! I always buy in the gluten containing food such as pizza and Indian samosas and heat them in a different oven to the gluten-free food. If I have to cook for the SCD on special occasions, since it is gluten-free, the gluten-free members of my family tend to all eat food suitable for the SCD.

    I am very lucky to have work colleagues who understand a little about being gluten-free and who will buy gluten-free cakes etc for me if they are bringing in baked goods for the others. My main problem is with family…I don’t think they will ever understand, they still don’t understand about a vegetarian diet!

    This was a very interesting read! Thank you!

    • Shirley on May 11th, 2012 12:05 am

      Thanks so much for taking the time to share your family’s experience, Vicky! :-) I think your comments prove that people truly don’t get it until they’re leaving with it or at least dealing with it in some form. I admit that I didn’t pay much attention to vegan living until I started blogging. We don’t “get it” until we “get it” and there are some of us who never do. :-( I love how you are so accommodating. I’m sure that kindess comes back to you, dear.

      Shirley

  2. GFDougie on May 6th, 2012 1:22 pm

    WOW! This is the most extensive article yet in regard to this subject matter I’ve ever read. Very well done and thank you.

    Dougie

    • Shirley on May 11th, 2012 12:11 am

      Hey there Dougie–I know I thanked you on Twitter, but thanks again for such nice feedback! We need to address some of these issues that folks struggle with and address them in depth. :-)

      Shirley

  3. Jennifer R. on May 6th, 2012 1:35 pm

    very good post, Shirley. I think gluten-full people never really stop and think about how we feel coming to events where there is not anything we can eat. Having a child with allergies really opened up my eyes, and I’m sympathetic to others’ needs.

    Just the other day, I skipped a potluck because I had not prepared something to bring myself and I wasn’t sure there would be anything for me to eat. It would not be enjoyable for me to sit around and watch them all eat. And I think what bothers me more… is all the questions I have to ask people to find out if their dish would be safe for me. Sooo tired of that!

    • Stephanie O'Dea on May 6th, 2012 10:44 pm

      “…I skipped a potluck because I had not prepared something to bring myself and I wasn’t sure there would be anything for me to eat. It would not be enjoyable for me to sit around and watch them all eat.”

      I’ve made this choice, too. Sometimes it’s just easier to make up an excuse.

      Our hardest events are at Italian restaurants with a set menu for an event. yick.

      • Shirley on May 14th, 2012 2:24 pm

        Hi Steph–Thanks for sharing your previous experiences honestly, too. Just like I was saying to Debi, we choose how much energy we want to invest.

        Italian restaurants are challenging on their own; a set menu is doubly challenging. Still, I’ve had good luck calling ahead and arranging a special gf option for such events. But something like a school spaghetti dinner fundraiser might be one that can’t be tweaked to work. :-(

        Shirley

    • Shirley on May 11th, 2012 12:18 am

      Hey Jennifer–Yes, I think you are completely right. And as I shared, I used to be one of those clueless people. In many cases, these folks are just preoccupied. Our whole perspective changes when we experience these issues ourselves or our children do.

      I’ve skipped events in the past because of the food issues, and will in the future, too. For example, a friend just asked me to go to a charity tea event with her and another girlfriend. While I can find something good to eat when visiting the local tea room or a tea we all hold together, an event where members are making the food is far less likely to have any gf options for me. Going and just having tea alone would be pretty frustrating.

      Thanks for joining in the conversation!
      Shirley

  4. Moriah on May 6th, 2012 1:48 pm

    Thank you for taking the time to write such a wonderful article. As one with Lyme disease and Celiac, I can SO relate to much of what you’ve written. I loved the part about the boogers on the carpet ahahahaha!! Thanks for the belly laugh :)

    • Shirley on May 11th, 2012 12:21 am

      Thanks so much, Moriah! LOL on the boogers, huh? We have to keep that kind of thing in mind when we’re starting to pay attention to others’ reactions and treatment of us. I’m all for belly laughs! ;-)

      Shirley

  5. Shannon Brown on May 6th, 2012 2:23 pm

    Great post, Shirley. I know there are those in the family that should be gluten-free but aren’t. I’m trying to step back and not push. My in-laws try but they just don’t understand. (knife in mayo :)

    • Shirley on May 11th, 2012 12:23 am

      Hi Shannon–Thanks! I’m pretty sure that everyone has those types of family memmbers. ;-)

      Sbirley

  6. Kim V. on May 6th, 2012 2:37 pm

    Excellent article! If only it could be required reading for everyone.

    In our family of six, my oldest son is the only one with Celiac’s. When he was first diagnosed I made every effort to learn all I could and bought ingredients to make him gf bread, cereal, etc. The rest of the family continued to eat gluten, but over time we became aware of how sensitive he was to even a crumb. We all had the best intentions to not cross contaminate the mayo, etc., and clean up after preparing anything containing gluten, but he was continuing to get “glutened.”

    Then a few months ago we found out that he has thyroid cancer which could have come about from his exposure to gluten over the years. It took this to finally smack us in the head and get rid of all gluten in the house. It has been a tough (and expensive) transition, but he is feeling better and the whole family benefits by us focussing on less prepared food and eating meals with healthy ingredients.

    I think if friends and family realized the potential health issues that can arise because of someone having Celiacs and being “glutened,” they would be much more understanding.

    All we can do is keep passing the word and hopefully one day it will be taken as seriously as someone with a peanut allergy.

    • Shirley on May 11th, 2012 11:42 am

      Hi Kim–I’m so very sorry about your son’s latest diagnosis, but I applaud you for making your whole house gluten free. I’m thrilled to hear that it’s having such great health benefits for your family, too. I’ve always said that I wish that gluten would show up under a black light. I think that kind of clear picture of gluten, too, would make others aware of the true amount of food that’s actually poison to us. A girl can dream … I totally agree on wishing that gluten issues would be taken as seriously as a peanut allergy. The effects may not be as immediate, but they are still very dangerous to us all. Thanks for taking the time to comment! Continued healing/good health to your son and family!

      Shirley

  7. Linda on May 6th, 2012 3:10 pm

    Great job with this topic, Shirley. I think it’s helpful just understanding the different categories of people. You can asses where people are and plan how to deal with it from there, rather than taking the same approach with everyone.

    I have been so blessed to have family and friends who really get it. I know many people struggle with this though.

    • Shirley on May 11th, 2012 11:55 am

      Hi Linda–Thank you! I think we all have wasted a lot of energy trying to use the same strategies on different folks, not thinking about where they are coming from. It can definitely add to the frustration of an already challenging situation.

      I’m so glad that you have been so blessed in this area though!

      Shirley

  8. Ricki on May 6th, 2012 3:23 pm

    Such a great post, Shirley, and so packed with useful information! I have encountered people from all four categories, but sadly the “get it” is the smallest for me. Like many of us, I usually bring my own food to events. And I couldn’t agree more–”everyone is normal until you get to know them”–ha ha!! :D

    • Shirley on May 11th, 2012 11:59 am

      Hey Ricki–Thanks! The “get it” is the smallest group for most people. Sometimes it might only be one person! And like I shared, when you pay attention, some in that group who should “get it” as they are supposed to be 100% gluten free for health reasons, sometimes do not. So taking our own food can protect us and keep us from going crazy with worry. I do a mixture/combo of things depending on the situation. Glad you like my normal quote! I have no idea where it came from, but it’s kept me sane by making me chuckle more than once. ;-)

      Shirley

  9. Delise Dickard on May 6th, 2012 3:23 pm

    Shirley,

    Great post. I’ve found that the psychological part has been the hardest part now that I’m nearing 2 years gf. My immediate family ( through a learning process) has been extremely supportive of me and my middle daughter who must be 100% gf. It helps make up for my side of the extended family where some are downright rude.

    Last thanksgiving our diet was a big joke to them and one person even called it a cult. Doesn’t this sound like grade school? When someone did ask that they not joke about it in front of us, they stopped talking but not hauling in all the gluten rich food they could find. One of my daughters, who is not gluten intolerant but is gf at home and is an amazingly wonderful gf baker, offered to make the birthday cake for my fathers last birthday ( he died last month). The response was that they didn’t want to be subjected to the gf diet. They bought a pile of Costco cupcakes instead. Totally their loss in my opinion.

    What gets me is that no one would dream of this kind of disrespect over other dietary based problems like diabetes, peanut allergies or alcoholism. Our struggle is unique.

    • Shirley on May 11th, 2012 12:10 pm

      Hi Delise–Considering you are an excellent practicing psychotherapist, I think your statement on the psychological components being the most challenging is a very “telling” one indeed. I’m so sorry about the loss of your father, Delise. As you now know we have experienced recent loss as well, with my MIL passing away. Nothing can prepare you for it. We wish to end their suffering, so there’s relief in that sense, but so much more as well. I extend my deepest sympathy to you and your family, as it’s certainly not easy from the granchild perspective either.

      It was your previous cult comment to me and our support group that inspired that part of my post. It is sad when the situation is treated that way. And as we were discussing earlier and you’ve said, treating celiac/NCGS like a peanut allergy or other condition widely accepted as serious would completely change the attitudes of all. I hope that one day we will see these conditions widely diagnosed and accepted as the serious life-threatening/life-altering illnesses they are and have folks respect them and give the needed support.

      Shirley

      • Delise Dickard on May 12th, 2012 2:20 pm

        All of our information shared is so mutually benefitial. Just to show the positive impact this makes in the real world: My daughter — who is at this very moment sick in bed (most likely) because of an exposure eating out — recently shared her gf wisdom with a friend. The friend and her family had symptoms that my 16 year old recognized as potentially gluten related. My daughter suggested they get tested for Celiac and then try a gluten free diet, regardless of the test results. Her young friend convinced her parents to get tested and two people in that family tested positive for celiac disease. Until our doctors are saving lives in this way…we have to stay upbeat and strong in our conviction about this being, for some, a wonderful resolution to life threatening problems. Shirley, I can’t imagine how many lives you have saved but it snowballs as your information is passed from us on to others. Thank you so much, Delise

        • Shirley on May 17th, 2012 7:07 am

          Delise–I’m so sorry about your daughter’s latest “glutening.” :-( And wow, wow, wow, on her being the impetus for her friend and their family getting tested for celiac and two family members testing positive! She should be so very proud; she has definitely changed and saved lives. Chances are that more in the family have gluten issues even if they didn’t test positive for celiac. Hopefully, the need for a gf diet for two will have the others eating gf much more as well. “A wonderful resolution to life-threatening problems” … indeed it is that for very, very many people. I dream of a day when they’ll/we’ll all know that. Thanks so much for your super kind words, dear, and thanks to you and your daughter for being part of the celiac/non-celiac gluten sensitivity diagnosis snowball effect–I LOVE that! :-)

          Hugs,
          Shirley

  10. Diane Gallegos on May 6th, 2012 3:51 pm

    Great post! Had the ” Just take the meat out of the bread thing happen yesterday…at a church luncheon…Thank you God for fresh fruit & veggies!!Most do not get the contamination thing. Keep the info coming!

    • Shirley on May 11th, 2012 4:18 pm

      Hi Diane–I don’t think I’ve ever properly welcome you to gfe because your first comment was on a giveaway post and I usually can’t reply to all the comments on those. So, welcome! I appreciate you being a gfe reader and I appreciate your comment. :-) Knowing the category of person that such a comment comes from helps, doesn’t it? If they are ignorant, but well meaning, you might just smile and say, “no, thanks” or “haha, I *wish* it worked that way.” That’s most likely the case at a church luncheon. Yes, naturally gluten free, real food is the saving grace in so many ways! ;-)

      Thanks so much,
      Shirley

  11. Maggie on May 6th, 2012 3:51 pm

    Wow Shirley, thank you for taking the time to write this for all of us. You’re amazing! I know people from all 4 categories too. Luckily only a couple from the Refuse To Get It – which for them is Denying. My family is incredibly supportive. I deeply believe we have a HUGE role in making others understand. We call in to our lives every single person. We give what we get. I know this may sound harsh, but I believe it. I have never really encountered many problems and I believe it’s because I have a positive attitude about the kind of people I want in my life. Sure, I may encounter a denial person, but I won’t seek them out. They’ll quickly go on my don’t call list :) Or I just know that they’re not ready yet. They’re operating from a place of fear. Okay, before I go on toooooo loooooong :) Loved the cute, sad pics!

    • Shirley on May 11th, 2012 4:23 pm

      Maggie–I love that your family is so supportive! :-) How interesting that you see the Denying factor, too. I don’t think the rest of your perspective sounds harsh at all. I think it sounds realistic. We really have to take care of ourselves and removing ourselves from energy vampires, etc. who won’t serve us well or bring us up in anyway. It does help to know that they are operating from a place of fear, as you say. I appreciate your comment here and your input on Part II so much, Maggie! Thank you!

      xo,
      Shirley

      p.s. those little one’s pics are so irrestible, aren’t they? a mama bear has to defend her sweet cubs. ;-)

  12. cheryl on May 6th, 2012 5:07 pm

    As always, thanks for a great, and thorough post. And those pics are truly too cute for words…
    I totally hear you about the vodka drinking friend, we’ve all done unintentionally thoughtless things like that over the years!

    • Shirley on May 12th, 2012 8:33 am

      Hi Cheryl–Thanks, dear. I did love those sweet faces and thought they drove home the message of advocacy for our gluten-free selves and family more than anything else. Yes, as Maya Angelou says, “when we know better, we do better.” So true.

      Shirley

  13. Moe on May 6th, 2012 5:39 pm

    Thank you for this post! I’ve been gf for coming up on a year this month. It’s amazing how much better I feel and think, many have noticed this in me. But still can’t figure out why I don’t cheat. I try to explain that this is not like Weight Watchers, there is NO cheating! I’ve already suffered 4 miscarriages, post menopause at the age of 41, dead thyroid and many other serious health issues, I’m not going to risk my health for a slice of bread! (though I do dream about food!).
    Thank you again for the article.
    Moe

    • Dia on May 7th, 2012 12:30 am

      Congrads on making that first year!! And hope your health continues to improve!
      Your issues sound similar to my daughter’s BFF, who also went through early menopause (was all day/all PG sick with her one pregnancy, before she had any idea! & ‘of course’ was eating crackers!) thanks to her gentle prompting, my daughter finally decided to have the genetic testing, almost 3 years ago!
      I am also not tempted to cheat – & don’t crave those not good for me foods … My granddaughters (7 & 12) have trouble at times being around friends who are eating all those other things, but we work on helping them have other options & good self image, which helps with the ‘won’t power!’ ….

      • Shirley on May 14th, 2012 2:36 pm

        Hi Dia–Thank you for responding to Moe and sharing your family’s personal stories! You and your daughter are doing such a valuable job in instilling confidence in your granddaughters. That truly makes such a difference in anyone living gluten free successfully!

        Shirley

    • Shirley on May 12th, 2012 8:36 am

      Hi Moe–I don’t think I’ve officially welcomed you to gfe yet … I appreciate you being here! :-) It’s wonderful to hear of your success living gluten free after some very tough times. I’m so very sorry you had to go through all that. What you’ve spoken on not cheating makes perfect sense; I certainly agree with you. Thanks so much for taking the time to comment!

      Shirley

  14. Nance on May 6th, 2012 6:48 pm

    I know that, before I became acquainted with you, my knowledge of celiac disease and those who eat gluten-free because of it was incomplete. I didn’t realize that eating gluten could actually cause physiological damage, not symptoms alone. That was a definite ‘aha’ moment for me that was huge.

    Some people who react inappropriately to those with celiac may just be unable to deal with their own feelings of frustration, especially if the sufferer is someone who they care about deeply. We all want to help or “fix” things for those we love, and if we can’t, it is upsetting. We feel powerless. Certainly that doesn’t excuse rudeness or outright nasty immature behavior, but if these people don’t have the practice routinely making accommodations for the restrictions that celiacs face, they may feel inadequate, ignorant, and/or overwhelmed.

    (As you pointed out, all feelings experienced by those newly diagnosed with celiac disease!)

    • Shirley on May 13th, 2012 12:53 pm

      Hi Nance–Thank you for sharing how you gained knowledge and understanding in this area. It validates the approach that some share in Part II where they remind friends and family of the actual damage caused by eating gluten.

      Thanks, too, for validating where others may be “coming from.” That need to “fix” things is a very important point! I truly appreciate you sharing that insight. It reminds me of an article I read once about a mother and daughter who struggled in their relationship because the mom always wanted to “fix” things. Her daughter would call to share something going on in her life and her mom immediately started telling her what do. Usually the daughter would get upset when this happened, but occasionally she would not. Finally, they figured out together that the best solution was for the mom to know where her daughter was coming from/what she wanted. So she started asking, “are you just sharing or do you want my opinion/solution?” The daughter would tell her the truth and then the mom would commiserate and/or offer solutions. This “ah-ha” moment improved their relationship tremedously. So I guess we could all apply your insight and that story to better deal with friends and family as, of course, we do greatly value their support.

      Thanks again, Nance!
      Shirley

  15. Fatcat on May 6th, 2012 7:31 pm

    Sigh.

    • Shirley on May 13th, 2012 12:54 pm

      Hey Fatcat–I’m taking that to mean “been there, done that.” ;-) Thanks for commenting, and hope you will read Part II because there are some great strategies shared there. :-)

      Shirley

      • Fatcat on May 13th, 2012 1:56 pm

        Yes, definitely been there done that. I and now my son, are the only gluten free people anyone around here knows …

        My mother in law throws a little bit of flour into everything …

        You know?

        • Shirley on May 17th, 2012 7:10 am

          Fatcat–I’ve had others say that … that they are the only ones in their area who are gluten free. Chances are there are more, but they might not be too vocal or you haven’t come across them yet. Online resources really help in this regard, but it’s so nice to have real life people you know who face the same challenges you do.

          Oh, yeah, I get that last comment … bread/flour, staff of life and all that. :-( Have to be super cautious with those folks, not to mention airborne flour concerns.

          Shirley

  16. Debi on May 6th, 2012 10:14 pm

    Brilliant, Shirley. This theme has been playing over in my life for the past couple of months. There are those I know that I can put in the first and last categories that I prefer to not do anything food-centric with just because they aren’t getting it and it gets exhausting trying to explain the same things repeatedly to the same people.

    That said, I have been blessed to have people who are supportive and don’t try the, “Just take one bite, you’ll be fine” line with me. I take that back. My SIL’s MIL was trying to push some of her pork on me at the end of the wedding reception. I didn’t know her at all and I didn’t know what was in the pork. Chaz and I politely declined several times. She finally got a bit nasty and said, “What? You don’t like pork?” She’s lucky I love my SIL and had no desire to start anything. Other than that, I am truly blessed that I haven’t faced that. Everyone is truly curious and wants to know what it is that gluten does to me and why. They ask questions so they can understand, maybe not fully, but each question is an opportunity I take to educate.

    • Shirley on May 14th, 2012 2:21 pm

      Hey Debi–Still catching up on all my comments after the crazy week in the lives of the gluten free plus the joyous occasion of Son’s graduation, so I’m sorry for the delay in replying to your and others’ comments. I know that I totally get that exhausting part and I’m sure others will, too. Again, we can choose how much to invest in these situations based on the groups we are dealing with, particular situation, etc. If I’m going to a once-in-a-year event and find out the folks I’m dealing with don’t get it and can’t accommodate, I’m unlikely to get too worked up about it. Skipping a meal or only eating cut veggies is not going to bother me for the short term. If it’s family or friends who still years later won’t make any acommodations, well that might upset me. The food pushing any time it always interesting, isn’t it? But the majority of the time, I’d say that I am blessed with situations where people want to feed me safely and learn, and do accommodate/work with me. I love the educating part, too. As reader Michelle says, she “plants seeds and waters them.” In many cases, folks eventually “get it” enough to feed us and may even realize their own issues. Win-win!

      Shirley

  17. Lynne on May 7th, 2012 12:28 am

    Shirley, you have hit the proverbial nail on the head with all of this. I can sooo identify. Thank you so much for putting into words what a lot of us cannot.

    • Shirley on May 14th, 2012 2:32 pm

      Hi Lynne–Thank you! Sometimes it is just knowing that you are not alone and that it is a “real situation” (vs one that you’ve created in your mind as some may like to make us think) that makes all the difference to our approach to it and being able to *deal*.

      Shirley

  18. Dia on May 7th, 2012 12:39 am

    Bingo!
    One restaurant owner, who assures me it’s safe to eat there, that most of their offerings are GF, will also make that ‘you’d have to avoid the crust & just eat the filling’ comment when I’ve come w/ a group, & she’s describing the deserts (they DO mostly do reductions for sauces – French – & simple veggies … of course I DON’T share the desert!’ – but it always makes me cringe & wonder!!)
    In one group of 8 galfriends, 2 of us are now GF/Egg & Dairy free, & one eats Paleo (so also GF) …. last year I skipped the summer beach retreat (before the others went GF), as the year before, even tho gals said ‘oh, we could ALL eat GF for the weekend, wouldn’t hurt us’- not!! There had been lots of gluten (though they were careful to keep entrees GF) …. so am cautiously planning to attend, as we have more ‘clout’ for keeping G in a separate area, if some decide they ‘have to’ have it!

    • Shirley on May 14th, 2012 2:38 pm

      Dia–There’s way to much to cringe about in the gf world, isn’t there? We all definitely can relate to the challenges of group outings, especially the extended ones with shared spaces and food. I hope this year’s retreat will be a success for all of you eating gf and gf/df! :-)

      Shirley

  19. Ina Gawne on May 7th, 2012 10:05 am

    Shirley – your post is absolutely brilliant! THANK YOU….it could not have been said better. You have covered ever “nook and cranny”. I have been through each one of those scenarios, and you have totally captured in words what at times I have not been able to say! Wise words of wisdom – Bravo!

    • Shirley on May 14th, 2012 2:40 pm

      Hi Ina–Thanks so much, dear. You are extremely generous with your words and I appreciate it! :-) And I’m so glad you found this post so helpful!

      Shirley

  20. Alta on May 7th, 2012 11:15 am

    Shirley, thank you so much for this excellent post. I particularly like that you’ve mentioned that everyone is normal until we get to know them – that’s kind of the theme at my office. I might get made fun of for my eating habits, but that’s more because I also eat super-healthy (and “weird” things like green smoothies and kale chips) on top of gluten-free. They carry on with their gluten-full habits and when things are catered, they’re generally gluten-full, but when it’s MY birthday, they want to accommodate me however they can. I don’t expect them to treat me special. Family – everyone has their own family members that can definitely be a pain when it comes to this. I was slow to understand just how careful I had to be, because growing up with a family member that had celiac disease, but WOULD just eat the frosting from the top of the cake, scrape off the top of the pizza, or eat the inside of the pie, made me falsely believe this was okay. (He has since stopped this and is taking a bit more care, thankfully!) So that made it difficult when I went gluten-free and found myself REALLY sensitive, and I had to take extra precautions to ensure my health. I am thankful, though, that my family is generally more accepting than some! :) It helps that we have several gluten-free people.

    • Shirley on May 14th, 2012 4:12 pm

      Hi Alta–Thank you! That quote on everyone being normal until we get to know them has helped me many times in accepting others’ weirdness ;-) so I hope it helps others accept mine! LOL I’m so glad that your office mates look out for you on your birthday. :-)

      Great point on how we see others handling living gluten free affecting our own perception of how strict we have to be! It’s very likely, as you know, that those who don’t realize that one has to live totally gluten free without chances for cross contamination will have ongoing issues and they just won’t understand why. They could even develop other autoimmune diseases and serious conditions because of that continued gluten ingestion. It only takes a speck to keep the damage/issues going, but many are reluctant to accept that. I’m glad you finally understood the ramifications and that your family member did, too. And, you’re right, having several gluten-free family members helps in many regards.

      Shirley

  21. Alisa on May 7th, 2012 11:55 am

    Such an emotional and insightful post Shirley! It really is unbelievable how food can have such a dramatic effect on so many aspects of our lives.

    • Shirley on May 14th, 2012 4:15 pm

      Alisa–Thanks! Food is more at our center than any other time I think. Whereas folks used to have three meals a day without constant snacking, drinking, etc., now food is constantly being consumed. So having a food issue can—at least initially until one figures out strategies—impact one’s entire day every day.

      Shirley

  22. Susan on May 7th, 2012 6:04 pm

    Wow — thanks for this great article Shirley. Some really great information on what it is like to try to live in the gluten-full world!

    • Shirley on May 14th, 2012 4:16 pm

      Hi Susan–Thank you! I appreciate the lovely feedback! :-)

      Shirley

  23. Tracy on May 7th, 2012 6:53 pm

    This is a fantastic post that I will refer to again when I need a mental boost! I’ll link it to our Gluten Intolerance Group of Marin newsletter too. Shirley, you have done a real service for the gluten free community. Thank you for all your work.

    • Shirley on May 14th, 2012 4:17 pm

      Tracy–It’s so good to know that this post gives you a mental boost and it worth a re-read! :-) I’m tickled you will be sharing it with others, too. Thank you for doing that and also for your generous feedback!

      Thanks again!
      Shirley

  24. Kim (Cook IT Allergy Free) on May 8th, 2012 12:16 am

    Shirley, you amaze me on every level. What an awesome post. I cannot even get started on all of the people I know from EACH category. The nice thing is that my close core group of friends all eat gluten free or have a family member that does so they really are the ones that “get it”. It has been easier to just surround myself with people who believe in the way we eat. But, I have also skipped events for our family when I did not have time to prepare something to bring along. It sometimes is just easier to eat something safe at home instead!

    I can only imagine how close this post hits to home for so many. We have been on this journey now for 8 years and I still get so worked up and frustrated sometimes when I have to deal with what I just refer to as ignorant people who would rather criticize than just take the time to try and understand what would happen to my family if they did eat gluten.

    You rock, my friend!
    xoxox
    k

    • Shirley on May 14th, 2012 4:41 pm

      Hi Kim–You are always way too kind, but thank you so much!! I definitely think that surrounding yourself with gluten-free friends can be the best approach for many of us. :-) I know that you have also introduced a lot of folks to living gluten free, so that has multiple benefits—improved health for them and easier better relationships between you all! But yes, sometimes just eating at home is often the right choice for all involved.

      Sometimes I am as calm as the Dalai Lama on this issue and other times, I get all stirred up. And yes that still happens 9 years later for me. Like you, Kim, I don’t mind the ignorant, well-meaning folks so much, but I definitely mind the ignorant, critical ones.

      xoxo,
      Shirley

  25. steph @ lungesandlunch on May 8th, 2012 10:14 am

    I have IBS and am gluten-free, soy-free, red meat-free, fish-free, dairy-free, and egg-free (Basically vegan, but I dabble in poultry), and basically anything that is inflammatory, like too many tomatoes. :( Needless to say, I’m a joy to cook for because everyone is convinced that I live off of lettuce, carrot sticks and water. I actually have great meals that are delicious and allergen-friendly. I’m fortunate that most people around me are understanding (it may help that I’m in Social work!) but I find that the exclusion for me is more of a social one. For example, when there is a birthday cake at work, catered meals at a conference, or someone buys lunch for everyone… I usually get left out because I’m too hard to accommodate or there is nothing available.

    • Delise Dickard on May 8th, 2012 12:40 pm

      Steph,

      I have some of Wegmans frozen cupcakes in the freezer at work just for these parties where they bring cake. They are 6 to a pack so I just pull one out to thaw. It helps me sooth my aching sweet tooth and keeps them from feeling rude.

      Delise

      • Shirley on May 17th, 2012 6:15 am

        Delise–Thanks so much for your input to Steph! I know that a lot of folks use this strategy for themselves as well as their kids at school. :-)

        Shirley

    • Shirley on May 14th, 2012 10:01 pm

      Hi Steph–Welcome to gfe! :-) Thanks for sharing your own story with us all. I had to chuckle a bit when I read that you “dabble in poultry.” ;-) I do understand what you are saying though. As far as having a diet much different from everyone else, you’ve shared what many of us are sharing; i.e., we make great meals and are not deprived. It is a bit different thing to be left out from other events though. Most of us adapt, but of course, it would be much better if we could be included in all events.

      Shirley

  26. Phyllis Mueller on May 9th, 2012 10:17 am

    the comment I get from my family on holidays is, “there must be something here you can eat”. they don’t even try. puts a damper on the whole event for me. I know I am celiac, but I still hate it even after 5 years! I am not a good cook, and baking is a disaster. Sometimes I feel like I am always depressed because I am hungry for good food, and get tired of always eating chicken!

    • Shirley on May 17th, 2012 6:31 am

      Hi Phyllis–First, we’re happy to have you here at gfe! :-) Yes, that’s a tough comment to hear/situation to be in. While there will ALWAYS be folks who are going to be difficult to understand or accept, respectfully, a lot has to do with our own feelings and the energy we put out there, so to speak. If you still hate your situation, it’s going to be hard to feel good about it and to have others approach it positively as well. Everyone can be a good cook; but we do have to get in the kitchen and play and learn. That part does not have to be hard at all. Choosing naturally gluten-free recipes, easy recipes can make all the difference in the world. I’m all about doing everything the easy way here at gfe. ;-) Try some of the simplest, most favorite recipes here … like Flourless Peanut Butter Cookies, Crustless Pumpkin Pie (or one of my many other crustless pie recipes), or one of my entrees like Flourless Pizza. There is no reason to live on just chicken when one is gluten free. You also might find it helpful to read my Grieving Gluten post. Be sure to read Part II of this They Just Don’t Understand series, too, as it offers very helpful strategies and tips on dealing with folks/situations.

      Shirley

    • Angela on May 18th, 2012 9:27 pm

      Dear Phyllis – I hear you! At first, I was overwhelmed with the “gluten free thing” and it was hard – but then I found Shirley’s blog and I realized that I didn’t have to give up taste, flavors, or anything, really, other than pain and discomfort.
      The recipes Shirley has are also very easy to follow and I was able to make an awesome poundcake, gluten free, in no time at all!
      Luckily, most people now watch out for me and tell me what I can and can’t eat :) but those few that still have their comments – I try to put some humor in it and if I can’t, I pretend to be very full.
      My big challenge will come when I go back to Europe – but that’s a comment for another day. Good luck Phyllis, hope you are doing well!

      • Shirley on April 16th, 2013 7:23 pm

        Angela–I’m only a year late in replying to this comment :-(, but I so appreciate you offering support to Phyllis and praising my gfe blog and recipes. :-) As usual, it sounds like you have figured out a good way to handle the challenging situations. :-)

        Hugs,
        Shirley

  27. Melissa @ glutenfreeforgood on May 10th, 2012 8:11 am

    What a thorough post, Shirley! You provide such good information to your readers. I think your “supportive, but not quite there” category is the one I seem to find most common. I have such unusual eating habits all the way around that it’s not only the gluten piece that people question. =) I think the comment you included from Chris’ article (I’m doing this for me and am willing to give up other things…) is a version of my most common response. I often say that I have health goals that trump everything else. I know, it’s hard, but it’s important to be true to yourself and stick to what is best for you. You’ve given people guidelines to do that. Nicely done, Shirley!
    Melissa

    • Shirley on May 17th, 2012 6:42 am

      Hi Melissa–Thank you so much for the feedback and sharing your own position/approach! :-) You make such a good point. It’s important to know where we are and to be comfortable with that first and foremost. How can we expect others to respect/honor our situation if we aren’t doing the same ourselves? If we still feel uncertain of our own health goals or even angry about them in some cases, we can’t respond matter of factly, affirmatively about why we eat the way we do and we can’t move on, so to speak. Once you have that acceptance and feel good about your own situation, most of the time others’ reactions won’t even phase you. Others’ reactions become an occasional speed bump, not a big STOP sign. ;-)

      Thanks so much for adding to the discussion!
      Shirley

  28. Lisa on May 11th, 2012 12:02 pm

    I am printing this out to give to my in-laws… I can’t exactly remove them from friends and family list! Christmas dinner I had nothing but carrots and celery sticks to eat, Easter I had the same vegetables and a deviled egg I made…if i bring my own food they think I’m rude or dramatic. If I or my husband offer ideas, or offer to fix the main course we are taking over or it is considered an overt comment on my mother-in-laws cooking….

    • Shirley on May 17th, 2012 6:56 am

      Welcome, Lisa! LOL … no, you can’t remove them, that’s for sure. ;-) It does sound like you are facing a tough situation, especially when taking your own food is not accepted. I admit that I don’t get that, except in the sense that folks can be very resistant to change and turn things inward (i.e., they’re saying something is wrong with me/us!). For family/group meals, usually everyone contributes so IMO it shouldn’t be an issue. I’ll be interested to see if printing this out does help open your IL’s eyes. It might … as I’ve found that sometimes writing a letter or sharing something in writing can give the person who is reading much time to reflect without the emotions involved in a conversation on the same. You know those conversations obviously … the ones we all have planned out in our head, but then the person we’re talking to reacts defensively or dismissses our needs and then we react in reponse to them. Not good. So let me know if this post helps. I’ll admit it could make things worse though. It might be hard seeing one’s self categorized as I have done here. Anyway, I really hope things improve. I suggest that you read Part II of this series if you haven’t already and I’ll also add that one gets stronger in dealing with these types of situations over time. I have always had issues with ILs and friends. Most of the time, I can just let it roll off my back. Just yesterday, a friend asked what kind of pizza she could get for us when I stopped by tomorrow? I thought Wow, she really doesn’t get it. And then replied kindly, “there are no pizzas that you can pick up that I can eat, but how about some tortilla chips and salsa and/or a great salad like that one you made for us before?” :-)

      Shirley

  29. Janet on May 14th, 2012 2:51 pm

    So far, I’ve been very fortunate to not run across anyone in my family/friends list who falls into the Refuse to “Get It” (or Deny They “Get It”) category. In fact, most of my friends at least try to make an effort to have gluten free foods available for me at events. Even if they don’t (like a couple of friends were having Tastefully Simple parties; I checked the company’s website and everything they produce either contained gluten or was processed on equipment/in facilities that processed gluten), they have been understanding about why I had to decline. One friend went so far as to not just do gluten free for me, but while I was on an elimination diet, made the entire meal to fit within my dietary restrictions.

    The most difficult situation was an “Ignorant, but Well-Meaning” couple that despite my telling them ahead of time that I couldn’t eat gluten (found in wheat, rye and barley) and initially telling me they were having a chili fest, ended up making chicken Alfredo with a gluten-full pasta and homemade gluten full rolls. Worst of all, she dished everyone’s plate up for them so there was no avoiding getting some gluten filled food. My heart sank when I saw the meal. Even though I knew it would wind up hurting me, I did pick at the veggies and meat. Fortunately I also brought a gluten free dessert and while we were eating that, I was able to explain to them in more detail of what I could and couldn’t eat (though I didn’t mention to them that I was probably going to get sick from eating their nice dinner–it seemed a bit awkward and I didn’t want to ruin their evening). They haven’t invited me back and at this point, I don’t know that I would accept an invitation without some additional discussions with them before hand to make sure they honestly “get it”.

    The thing that surprises many folks (my parents, especially) is how easy it is to cross contaminate a gluten free food. I was explaining to them this weekend about the issue with the so-called gluten free pizza crusts at Dominos and why they really aren’t good for anyone with any kind of gluten sensitivity. My mom couldn’t fathom that something as small as touching a gluten filled crust with a gloved hand would be able to pick up enough gluten that it would contaminate any container of toppings that the person put that gloved hand into.

    • Shirley on May 17th, 2012 7:17 am

      Hi Janet–It’s great to see you again! Thanks so much for taking the time to leave such a thoughtful comment. :-)

      I’m so happy that overall you have such supportive family/friends; that makes such a huge difference! I am sorry about the experience with that couple though. It will probably be less stressful and risky if they leave you off their guest list in the future. I know that can be disappointing for sure, but sometimes it’s the safest route.

      I understand what you are saying about others having a hard time fathoming the cross contamination concerns; that’s usually when we are accused of being a bit well, uh, insane. Initially, Mr. GFE even thought I was going overboard in that area. Have you seen the photo of a slice of bread with the little speck at the bottom shown as the amount that it takes to cross contaminate and do damage? It’s such a good visual! I’ve seen it on Facebook, but haven’t been able to find it again to snag the source. If I find it, I’ll come back and share the link.

      Thanks again, and stay safe! :-)
      Shirley

  30. ella @ lifeologia on May 16th, 2012 11:08 pm

    Oh dear…. yes this has happened to me.
    Tears were there… anger was there and I’ve learned that I just can’t change the world. What I CAN change is how I look at the world.

    My family will probably never understand… my mom will probably always say ‘you can have just a little’! (no I can’t mom – being all will-powered is hard enough, and then your mom to actually make it worse!?) Uffff!!!!

    When I do go out to a friend’s house or my family and I know food would get served, I always ask If I could bring something (kind of implying or reminding them that I could bring something that I could eat and share with everyone).
    It’s the hardest around holidays that’s when it always gets even more emotional… because so much food is there that I can’t eat.
    And I’ve learned that I can’t change everyone’s behaviour.

    I’m not 100% guten free, but I do avoid 3 major gf grains (but when I do have some it’s very rarely) and I’m also dairy and egg free. No meat either – about 95% percent vegan, except for the occasional wild salmon (but I will not eat farmed fish – I still don’t know how to ask where people get their fish from? So in most cases it’s just veggies I eat when there’s no other options)

    But I’ve stopped being a cry baby about it. I usually just eat at home before a party ;) and then try to brush off any emotional and anger issues I may get. I also try not to label my friends that they don’t care… they just don’t understand and I can’t make them understand – but that doesn’t mean they’re bad friends….

    I’ve looked at a diet change as a positive thing. What’s so great about wheat anyway? If I could offer any advice to your readers (and I’m not even close to experiencing a full GF diet- but I’m pretty close) Is that it’s a blessing not to eat that crap! ;) Thankfully it’s a lot easier nowadays to find great alternatives, and there’s a lot of support even through blogs etc. when it’s not your close family and friends. That alone is amazing to know you’re not alone.
    Point is, gluten just isn’t great for anyone. We should all embrace a healthier diet – and be glad gluten is out of it! ;)
    Good luck everyone. xo

    • Shirley on May 17th, 2012 7:24 am

      Hi ella–Welcome! I so appreciate you being willing to be so open about your own experiences and what an uplifting message to everyone–thank you! The hurt and anger can definitely dissipate when we move on. I’ve had two friends this week who have demonstrated once again that they don’t get it, but yes, they are still wonderful friends. And you’re definitely right about going gluten free as a positive thing. Most of us start eating real food–fabulous real food, I might add–so I get more than a bit aggravated when I read the articles about how unhealthy a gf diet is UNLESS one has celiac/non-celiac gluten sensitivity. Nope, we all do much better without gluten as long as we stay away from the processed stuff that’s devoid of nutrition even when gf.

      Thanks so much for commenting!
      Shirley

  31. Daisy on May 18th, 2012 5:13 pm

    This is so true! The people who “get it” in my life are my mother-in-law (she’s a registered dietician and always makes sure she fully explains how she prepared all the yummy gluten free food she makes me) and my athlete friends (traveling with a group of triathletes, every single person has a cooler with just as much food as me, they are very serious about their diet). My husband is great, he is the one reminding the restaurant staff “She has a serious reaction, she can’t have anything that even touched wheat or gluten.” The one person who does not quite get it is my mother. She is trying, though, and we are taking a gluten-free cooking class next week! I am hoping it helps her see how easy and delicious gluten free cooking can be.

    • Shirley on April 16th, 2013 1:51 pm

      Hey Daisy–I’m always mortified when I re-visit an older post and see comments that I never replied to, as I was when I saw this one from you. :-( I am sorry! Now commenting almost a full year later, I’m grateful that you do have so many in your life who get it and look out for you. I also hope that the gluten-free cooking class with your mom was helpful in getting her over her fear of gluten-free cooking for her sake and yours. Let us know if you get a minute and want to share. :-)

      Shirley

  32. happy girlfriend on December 9th, 2012 8:47 pm

    This was a wonderful, thoughtful and well written article. It helped me out a lot! See my dad is in the “refuses to get it ” category. He wont acknowledge my dx of celiac disease. When he cooks meals, he does not include food I can eat. Someday, he hopes, I’ll stop being “picky” .

    • Shirley on April 16th, 2013 7:13 pm

      Happy girlfriend–Since so much time has passed (I apologize!), I sincerely hope that your dad has moved out of the “refuses to get it” category or you’ve learned some strategies to deal with that. Sometimes the folks we love end up seeing firsthand what an accidental “glutening” does to us and move to a new category, a more supportive one. I hope that is true in your case, dear.

      Shirley

      • happy girlfriend on April 16th, 2013 7:27 pm

        It has been a long time lol but its all good =) I do still get an occasionally sarcastic remark from him but our last visit was an improvement lol. He has seen me get sick and me not know what the heck I ate so that probably convinced him too.

        • Shirley on April 16th, 2013 8:26 pm

          Thanks for being so understanding! And I’m happy to hear that the situation with your dad has improved. Sorry that seeing you ill was most likely the cause of his new and improved outlook, but like I said, that can have an effect. Sometimes our loved ones act this way when they don’t understand or they are afraid of finding out they have food issues and being “curtailed” themselves. Anyway, I am so happy you are doing so well! :-)

          Shirley

          • happy girlfriend on April 17th, 2013 12:51 am

            Well at least some good came out of me becoming sick, right? And I can tell you he’s definitely conflicted when it comes to nutrition.

          • Shirley on April 19th, 2013 11:36 pm

            happy–Good almost always comes out of life’s challenges. ;-)

            Shirley

  33. Shari on April 13th, 2013 6:21 pm

    Wow, I could totally relate to everything in this article (and comments). I was diagnosed Celiac in early 2012 and it has been an uphill battle as far as friends and family are concerned. My hubby was probably the hardest one to “mostly get it” as he had a friend diagnosed 30 years ago with Celiac who told him it wasn’t the end of the world. The translation hubby took from this was that it was insignificant and it shouldn’t affect life at all. Now he totally understands how wrong that translation was (divorce was seriously considered, and thankfully avoided!) Now we’re doing great together and hubby mentions to me what he ate earlier in the day before kissing me. Hardest family now would be my mil. Over the last year, she’s brought pie into my home, and bought dinner for us (delivery pizza) and recently stated that a couple crumbs of bread in the butter won’t kill me. After being polite for this year about it, I finally cracked on the last comment. I said.. “YES IT WILL” quite loudly and very obviously startled her. I had just recovered from a gluten reaction so severe my doc wants to give me an epi-pen so it actually could kill me. I explained what the doc said and now she’s convinced that I must have a peanut allergy. /facepalm. Work in progress I can only assume. Sigh. She would fit into the ignorant but well meaning category and I love her dearly. I just can’t risk eating her food. After this year and a bit, there are far more people in my life that at least try to get it than there are others. My current suggestions to anyone having issues: Stay vigilant and look for positives.

    • Shirley on April 16th, 2013 7:20 pm

      Hi Shari–Welcome to gfe. :-) Thank goodness your husband came around to being supportive to you. I am glad that you are not tolerating your MIL’s ignorant remarks. I wouldn’t worry too much about the actual degree of her lack of understanding though, unless you should you ever decide to eat food that she has fixed. I am glad that there’s love there and progress of some kind. I think we all have to remember how ignorant we were on this topic when we just started out. I think your advice to everyone is excellent. Thank you so much for taking the time to share your experience with all of us and offer some words of wisdom!

      Shirley

  34. Rachel on May 1st, 2013 7:24 pm

    I keep reminding myself that gluten works like opiates . . . they are all addicts in denial.

    Seriously – my 4-1/2 y/o granddaughter can tell in one bite – it doesn’t taste right.

    I’m sure she’s GI, if not downright celiac, but her parents in denial as well.

    • Shirley on May 1st, 2013 11:21 pm

      Hi Rachel–Welcome to gfe! :-) I must admit that several of my gluten-free friends and I have said the same or similar. They are “altered.” They are “glutened.” It is documented that gluten does have such an effect and I remember how I was “on gluten.” I’m glad your granddaughter is so aware. It really is like that for many of us, but it only happens when gluten is out of one’s diet.

      Thanks so much for taking the time to comment and share your experience! I sincerely hope there’s some epiphany for your family members in the future.
      Shirley

  35. ElseB on June 8th, 2013 6:19 pm

    I heard you speak today at the Canadian Celiac Association’s Annual Conference on this topic and the 5+ stages of grief, and it was the best presentation I’ve probably ever heard during my 5+ years as a Celiac. You managed to articulate so well what so many of us experience daily! Thank you!

    • Shirley on June 8th, 2013 6:24 pm

      Hi ElseB–Oh my goodness, you just brought grateful tears to my eyes. Thank you so very much for those extremely kind words! I am so, so glad that my presentation spoke to you! If you haven’t come up to speak to me already, I really hope that you will this evening. I’d love to meet you in person! :-)

      All the best,
      Shirley

  36. Suzanne on June 25th, 2013 11:56 am

    As gluten intolerant, but not celiac, I experience wheat as a sort of addiction. If I start, it is very hard to stop, despite the uncomfortable side effects. You kindly reminded me about what it does to the opioid receptors in the brain. At the risk of sounding cultish, I think that part of this denial and lack of support comes from the fact that many people are addicted to wheat and they do not even know it. It is so pervasive in our world, there is no way to (or consciousness to) avoid it. It is a cheap (subsidized) crop and has been genetically modified to the hilt. It just feels like they are somehow so reticent to admit that it is a big problem for many people because, subconsciously, they are “protecting their supply”.

    • Shirley on June 25th, 2013 9:27 pm

      Hi Suzanne–What you share is true of many; that’s why many attempt to go gluten free, but don’t stay gluten free 100%. And you don’t sound cultish at all to me. I will admit that I’ve had that very same discussion—and related ones—with other gluten-free friends before. It’s true that sometimes folks have no idea that they have gluten issues and are so “altered” because of gluten. In some cases though, they suspect that they do have issues and fight knowing the “truth” with all their might. I actually briefly mentioned some of these thoughts in my presentation (which was partially based on this post) at the Canadian Celiac Association conference. Many of our friends and family see themselves in symptoms lists, what we have experienced, etc., so sometimes there is fear that they, too, will be diagnosed and have to give up gluten. When it’s a family member, this can be more true than ever, as we know that celiac is genetic. Many can’t conceive of giving up their gluten.

      Thanks for the additional thoughts!
      Shirley

  37. RayeHawk on June 25th, 2013 3:10 pm

    Suzanne on June 25th, 2013 11:56 am

    “As gluten intolerant, but not celiac, I experience wheat as a sort of addiction. If I start, it is very hard to stop, despite the uncomfortable side effects. You kindly reminded me about what it does to the opioid receptors in the brain. At the risk of sounding cultish, I think that part of this denial and lack of support comes from the fact that many people are addicted to wheat and they do not even know it. It is so pervasive in our world, there is no way to (or consciousness to) avoid it. It is a cheap (subsidized) crop and has been genetically modified to the hilt. It just feels like they are somehow so reticent to admit that it is a big problem for many people because, subconsciously, they are “protecting their supply”.”

    Right ON, Suzanne! My experience EXACTLY. I have this issue with gluten and sugar. Actually, with all simple carbs. Too much fruit will even get me.

    And here’s an interesting point – I recently bought the new (around here, anyway) Maple Crown Royal. I drank just a few sips, and that stuff talked to me for a week. As a matter of fact, just thinking about it makes me want it now, months later. I can drink tequila or rum with no cravings, but I’ve had a total of about 1 Tablespoon of Crown Royal, 6-8 weeks ago, and I *still* want it.

    How much of alcoholism is gluten-related? We have accepted that much of Native American alcoholism is allergy-related. Maybe it’s time to look at more . . .

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