Samantha said,

Oh, I totally know what you mean. I have very nearly eaten bagels several times recently, just out of pure frustration. I’d say those social situations where someone thinks they have done you a favor are the hardest. And when someone takes a bite of an incredible sandwich, and they want to offer you a bite. I hate feeling like a burden when I’m a guest. What I hate more than anything is that gluten free eating has killed any spontaneity in my daily schedule. I hate planning my meals and researching every restaurant. I want to be in a rush, grab a sandwich, and keep on rushing. Why aren’t there more grab-and-go GF foods?

Katya said,

I feel you’re pain. The hardest for me was being able to control my GF diet while living in the US. Right now, I’m studying medicine in the Caribbean and its just so hard to stay gluten free. As long as I cook for myself, its pretty much ok, but I often need to eat on campus since I study so much and I’ve been glutenized so much here. On top of that, my gut is so messed up that it would probably take a good 2 weeks of strict diet to get me back to the way I was a year ago. So yes, sometimes being GF just sucks.

On a happy note, maybe you can eat at Momofuku’s. I did! I didn’t call ahead but just walked up to the nice chefs and explained. Though the duck was off limits, I remember some asparagus bacon delight that really made my night and I didn’t get sick that evening! I’m sure calling ahead would have been better (ahem, safer). Best of luck to you.

Susan said,

I’ve been gluten-free since about 2001. I was 46 years old then. I also react to soy. The most frustrating experience to date was attending my nephew’s wedding reception. It was in a banquet center in Northeast Indiana. (No one there understands what gluten-free means.) Back to the food: There was a chocolate fountain: I could eat the raw fruit, but the only hot food I could eat was a baked potato. All the vegetable and meat entrees were in gravies or sauces. I couldn’t even eat the salad because it was brought to the table with croutons all over the top.
Birthday parties at work are awkward. Everyone feels bad for eating in front of me. I always tell them not to worry-because cake is like poison to me.
Our church often has pot lucks or after church pizza lunch meetings. I usually only eat just what I brought because, evidently foods get contaminated easily with all the spoon sharing and what ever else happens, because it never fails that I have a reaction to something that seemed like it should have been gluten free.
I seldom eat gluten free breads or pizzas because they are inevitably disappointing. Once in a great while, I will make a GF pizza just because I miss pizza so much. but after I take a few bites I think,”This was not worth all the extra work it took to make it seem like the real thing.”
The first time I made some muffins with Pamela’s Baking Mix-it was crunchy-textured around the edges-and I cried for the first time since becoming gluten-free.
Having to be gluten-free is like going through mourning: You have to adjust to life with out that which you loved. Nothing can ever take the place of your loved one. Life as you knew it will never be the same, and it sucks. But then you eat a big bowl full of crunchy buttered popcorn and feel much better.

» Gluten-Free Honeybaked Ham | A Gluten Free Guide said,

[…] a reminder of all of the discoveries I’ve made since starting the gluten-free diet.  Even though sometimes the gluten-free diet just sucks, frequently the new versions of gluten-free dishes are actually better than what I was eating […]

Holly said,

THANK YOU for posting your brutally honest feelings of disappointment. I sometimes get extra frustrated reading online info that paints a misleadingly happy shiny picture of GF eating….as if any of us who gets disappointed is doing it wrong. Yes, we can make it live-able, but do we really have to like it??? Extra credit to you for telling it like it is, yet keeping positive too.

Susan Mason said,

The fight at the Chinese restaurant with my husband was not pretty. Everything he wanted to order was breaded or noodles (wheat not rice). If it had been lunch, I would have just been able to get a plate. The attitude seemed to be that I was trying to annoy him or make him wrong and it wasn’t his problem. I was just trying to get a couple of plates that I could eat because just eating rice would have made an argument also. What is the defensiveness that other people have about diet issues. Are they maybe subconsciously picking up on our disappointment and feeling responsible for it?
I cook at home, so he doesn’t know everything I have been giving him is GF. I get him some french bread, and he buys crackers to snack on. I guess I will just have to insist on the Sushi restaurant because I do not get sick from that.

Christy said,

My friends and family have all been incredibly considerate, and I’m very, very grateful for that. I just went completely gluten free earlier this year. The worst blow for me was giving up eating at places where they don’t speak english fluently. One of my absolute favorite things to do was to find a strange little ethnic restaurant and try tasty looking dishes that I didn’t recognize. I’ll never be able to do that again, most likely. l can’t even go to a sushi place unless they speak enough english to check whether their rice vinegar has wheat in it.

My boyfriend’s parents are as in to neat little restaurants as I used to be, and somehow they’re discovering a treasure of them in Indianapolis…. egyptian, iraqui, etc… just an hour north of us. Occasionally my boyfriend will forget and start telling me about some great place he went to with his parents. He’s been absurdly sweet about this whole thing, and he always feels just horrible after I get him to stop talking… (shrugs, smiles). But yeah… I miss the adventure in eating. I can fake cookies and pizza well enough to keep me sane. But the possibility of korean, or bulgarian, or ethiopian…

paula said,

The first time my husband and his brother ordered pizza after I went gluten-free I went to my room and cried.

dotslady said,

I was invited by a neighbor to a dinner party actually hosted by another family using Carrabba’s Italian (they won this “dinner” at a school auction). There were five couples. I tried doing my homework: I called Carrabba’s to speak to the event planner to no avail (nobody seemed to know about this event). I tried asking the neighbor to call the hostess but she said she didn’t know her well enough. I had to fly by the seat of my pants (this was a couple months into being gf). When I got there, I started inquiring about the ingredients w/the Carrabba’s employees (who I think were actually the owners). I felt they felt it was the Inquisition. It was not a good time to ask as they were in “prep” mode and busy busy. I asked if they could leave the dressing off the salad but it was too late. Everything else was bread, pasta or a saucey recipe.

The hostess asked well, “What CAN you eat?” like it’s SO weird this “gluten allergy”. I told her plain fruit, cheese, vegetables, hoping for something (I was starved having not eaten enough before I left). I sat at that table watching everyone eat their beautiful meal AND dessert with an empty plate before me. It was excruciating and brutal. I didn’t have the gumption at the time to ask for a flippin’ apple or something because I wasn’t quite right in the head yet. But I sure would NOW that I’m better.

(I knew at the time that Carrabba’s has a gf menu, so I was confused why the owners of this one didn’t know much about what I was talking about, too. My luck!)

Jacqueline said,

I love this post! In my work I do a great deal of bereavement counseling. I have had to put those skills to good use on myself. Food = communion. The restaurant where I have been going for over twenty years and can no longer eat. The one restaurant my now deceased father loved that is still in business. The ice cream place (cannot eat sugar now either) where my friends and I have gone FOREVER. My favourite pizza place that on trips home would get a visit before family! All of these are lost to me, as are sharing these places with my future husband. I have cried. And it felt oh so good. I have found somethings to be better than before–especially no longer deserving my “Poopsie” nickname. But I will miss my “old friends” too. Who wouldn’t? And like so many of you, I really miss not being a “food burden.” It sucks!

Sheila Nelson said,

15 yrs. ago I was allergic to milk,wheat,dairy,corn & tomatoes, I could not eat sugar. I drove 30 miles to a decent health food store, back then the variety was lacking you didn’t have loads of recipes and products online or restaurants that accomodated. Health food stores were just becoming popular. This year I devolped allergies to gluten and citrus fruit including citric acid (a preservative in everything). I’m very grateful today for all the resources. I’m grateful for corn,potatoes and rice everything, what would I do with out them? Meat,eggs and fresh veggies and fruit out of my garden. The yummy brown rice bread I make in my bread machine etr. But yes, it’s daunting I prepare hours in advance just to spend time with my boyfriend. I’m actually eating healthier than ever but it sure does consume my time. There are many diseases that cannot be contolled there are worse plights than this. But it’s okay to acknowledge that it is difficult, and wish you could eat whatever and take it for granted like everyone else.

Joanna said,

Hot dog – how refreshing to know that I’m not alone in my moments of sadness, mourning, and nostalgia for the gluten-filled goods I’ve left behind! It’s been almost a year since I went completely gluten-free, but a few years since I figured out what was causing all my digestive troubles and started on the GF journey. While most of the time I am not bothered by my dietary restrictions, I find myself with many of the same feelings you’ve all noted when dealing with holidays, special functions, and grab-and-go situations. So nice to know I’m not the only one that finds it daunting, overwhelming, or just plain burdensome to try to live GF in gluten-filled world.

Besides being gluten-free, I also severly restrict most other grains and sugar to manage an ongoing candida issue. Then 2 weeks ago I found out I am also sensitive to a wide range of other foods, including corn, strawberries, cherries, apples, pears, romaine lettuce, garlic, onions, etc. I just about cried the whole weekend afterward realizing how much more difficult managing my diet just became. The emotional distress caused by trying to eat out is almost more than I can take at this point – even if you find something to eat on the menu, it’s usually the LAST thing you want to eat. (Lettuce with olive oil and vinegar. Yum.) While I often try to cheer myself up with the knowledge that many in this world are much worse off for food than I am, it doesn’t always work.

While my wonderful husband has been great about my dietary restrictions (afterall, he watched me suffer until we figured it out!), he doesn’t always understand my emotional reaction to the diet. I think it’s hard for other people to understand how isolating and marginalizing it is to always feel like you’re both a burden and an affront to others because of your diet, let alone the stress of constantly planning each and every bite of food you put in your mouth for the rest of your life.

Thanks for letting me share and thanks for posting this entry!

Jessica said,

I have been diagnosed with Celiac disease and it is soo nice to read this blog and see how other people share my feelings. I have had this for 23 years (since i was born) and the doctor did not test me for CD until a few weeks ago. I just dealt with getting sick everytime I ate. When going on dates I would always suggest somewhere I didn’t have to eat, like bowling. Even drinking beer made me feel sick (not because I drank a lot, even after one beer I felt sick). When going to dinner with my family; once I got out of the resturant I would have to go to the restroom and I would tell my dad to get home a.s.a.p. At my old job I wouldn’t take my lunch break because I knew I would get sick and didn’t have time for another break.
Now being diagnosed, after two weeks of being on the GF Diet I feel so much better. I am not getting sick, I have more energy, the rash on my hands went away, etc. I’m depressed because like many of you said, it is like going through mourning. One minute I was eating delicious pizza, the next minute I have to go on this diet. I miss the foods I can’t eat. When my boyfriend and I get married, I can’t have out wedding cake, I can’t enjoy our food at the wedding, traveling with him is going to become hard, and on top of that when we have kids there is a big chance they will have CD. I sure as heck don’t want to put them through this.
I am soo grateful that I have such understanding family, boyfriend, and friends. My boyfriend took me to a resturant that serves gluten-free food so I didn’t have to worry so much about slipping up. My family has taken me to different markets to check out the selection of food I can eat. But I feel like I am a burden now and I don’t want to go anywhere. I like bring my GF salad dressing with me everywhere just in case. It is not fun. People tell me how I will lose weight. I don’t care about that, I just want to be able to enjoy all the yummy food that I can’t have now.

Ginger said,

I am newly diagnosed as of 2 wks ago! This is extremely difficult for me and right now I am in a serious state of mourning/depression! I have a large family and its very difficult and overwhelming for me! Every bite of food I take makes me extremely anxious! I fear that pain I’d feel if I messed up in my own kitchen! I’ve been out to eat twice now and was more nervous than I’ve ever been before! Both restaurants were great about my GL diet and I had no issues after eating there! My biggest frustration now is trying to teach my family about this and getting them to understand how serious this is! They all sat there and watched me waste away and be very ill for several months but they still don’t seem to “get it”! I am starting to feel some better and wish there was an immediate FIX. I am angry and I am mad at the food processing companies that have gut loaded me with wheat products! I am frustrated that I allowed myself to find processed foods so appealing and eat them! I am disgusted that I didn’t research what I’ve been feeding to my family and self all these years! And more so, I am VERY frustrated that the cost of being able to eat GF will more than likely mean eating or selling my home! I am trying to stay positive and accept my diagnosis, but in the end, It breaks my heart! But being here and reading what all of you have written gives me hope! I thank you for that!

Louise Bryant said,

I have a friend who is an executive chef and when he comes over he often brings a big dish of something delicious. More often than not it has something gluten in it so I can’t have any (did he really have to add those wheat berries?). I always remind myself it’s great for the people who can eat it so it’s still a nice thing to do, but I can’t help feeling frustrated by the situation, especially the time he decided to toast bread in my oven and I then had to clean the racks before I could make another GF pizza.

It Changes Everything | Stay Gluten Free said,

[…] then, tremors of loss and anger creep in. This author echoes the thoughts of many people forced to a gluten-free diet. It’s no comment on the diet, society, not even her […]

Carin said,

My worst moment occured not long ago when visiting my parents. My mother never seems to consider meals until the last minute and then gets upset with me for making the meal difficult. I went the the grocery store with my daughter, bought nothing, and ended up crying on the way back to the house. I usually pack all my snacks etc. so that I don’t have to inconvenience anyone. My aunt on the other hand, has gone out of her way to find GF foods for when I visit her and my grandmother and understands more about the condition than my mother ever seems to.

p.s. For those in the New York area: Wegmans has a big selection of GF foods, even pies (my brother and sister-in-law bought 2 for me at Thanksgiving pumpkin and apple!)

Courtney said,

I have two family members with Celiac, and even though I haven’t developed it, I have had to help them lead a GF life. I was living with my father when he was diagnosed, and had to educate myself to help him clean out the cupboards and eat out safely. I think I’ve pretty much become an expert!

My sister, who is also intolerant, always carries GF granola bars or snack bars with her, especially on trips. If you ever get into a situation where there is nothing to eat, you can at least have that to tide you over.

We baked a GF cake for my wedding last year so everyone in my family could have cake. There are always things you can do so you don’t have to go without.

Mar said,

I feel & agree with so many here…
My 21 yr old dtr and me (mom) BOTH have wheat/gluten sensitivities…blood tests both were false/negative but we prob had done it to ourselves because we had started eating “gluten-free” about 2 weeks “before” being tested (she had seen a Naturopath doctor who diagnosed her…I had the same symptoms for years… under the “IBS” label from my family doc…(my mom AND brother are lactose-intolerant interestingly).
Eating out is a nightmare & usually a disaster…restaurants claiming to be GF don’t warn you about cross-contamination.I learned & continue to learn the hard way..(bet thing is to (if possible) find a place that IS completely GF or vegan friendly…)
Ordering in food is WORSE+++…no more pizza or chicken or nothing. Husband pouts…he’s NOT willing to eat GF & feels left out (makes me feel “guilty” because suppers are late+++ now). Making meals from scratch takes a lot of time & effort & thought(I get no help here). Yes..eating GF/CF has its rewards but it’s exhausting+++….always having to plan plan plan…it’s expensive too (my food bill has sky-rocketed)….husb still wants to eat “normal” food. Thanks for letting me rant…nice to know “I’m not alone”.

Rebecca Vanderloosen said,

I loved this post. I also cried the first time my boyfriend ordered pizza and I got the stupid salad. Living without bread has been tough, but the thing I miss the most…beer. Here in Minnesota we have Summit Beer, and it’s wonderful. No one needs beer, and I know I’m probally better off without it, but it’s so delicious. There are a few gluten free options, but they are not delicious. On a more positive note, in south Minneapolis Parkway Pizza will deliver GF pizza. It isn’t bad and if you tell them to make it “well done” it’s pretty good. I just wish someone could come up with a decent GF beer.

Tania said,

I am only four days into my new life after being told by a clinical allergist.. after many years of problems… that I have to avoid gluten/wheat, dairy, amines and nickel. The withdrawals have been terrible, the headaches and exhaustion is horrible. I am also 11 weeks pregnant but know the headaches etc are due to coming off my danger foods.
I have been searching for recipes and it hasn’t been easy because I have so many food restrictions. I get sad when I watch my family eat the foods I love, but I have a mantra that I keep saying to myself..”concentrate on the foods I can have, not the foods I can’t” which is what the nurse said to me to make me feel better when I was in tears, and there have been lots of tears.

I wrote a list of the food I am allowed (fits too easily on one page) and emailed it to my parents, if it isn’t on the list then I can’t have it, they have been very understanding… thankfully

I am sure after the withdrawals are over and I venture outside more I am going to be confronted with foods I am desperate for, and that will be a challenge, but I’ll just keep going with my mantra and concentrate on how I feel and look. After only 3 full days I have already lost 2kgs (5 pound)!!

Nathalie said,

I got really sad after reading that thread! My worse memories are from the beginning of my 1st (and only yet) pregnancy. I was hungry all the time and everything I couldn’t eat smelled so good! Worse – being pregnant increased all my food sensitivities, so absolutely no cheating was tolerable…

One of the most famous bagel factory (St-Viateur) is located near my office. Once a month, the company provided us free freshly baked bagels. It was literally a torture working on those mornings. Of course I could bring my own GF bagels, but seriously, their taste & texture have nothing in common…

Another time, during a XMas trip in my boyfriend’s family, they had planned that we all go have supper in a somewhat fancy hamburger restaurant. I forgot to take an afternoon snack (worse mistake ever) and we had to wait in line for almost an hour before getting a table. Then I saw the menu and was horrified finding almost nothing that fit – I’m also dairy and beef sensitive. I couldn’t order any appetizer and had to watch everyone enjoy a huge stack of onion rings, drinking milk shakes. My stomach hurt from hunger and I felt both like fainting and crying. Finally, I got my plate – a small chicken “burger” without the bun and without sauce, placed on a soggy piece of lettuce. At least there was (oily) sweet potato fries, but I wasn’t even sure they weren’t coated with flour. To be polite, I had to wait until everyone was served to eat, so the chicken was cold and dry when I ate it… That meal totally sucked for me. At least, I’ve learned my lesson and decided from now on not to be too polite when it comes to food (especially when pregnant)!

Another sucky thing about being sensitive to food is that it’s genetically transmissive. My girl is sensitive to lots of food so I put her on an even stricter diet as me (she reacts to fruits also). I have to deal with all the grandparents who can’t understand that; either by judging me (sometimes even insulting me) or bypassing her diet (at least she’s not that sensitive, so she only gets a little eczema & diaper rash). I’m often depressed about that, how bad my genes are and how I should be ashamed of propagating them.

Now I’m considering having a second child and have to deal with all those thoughts & memories. They’re probably not gonna stop me though!

Julie said,

I am SO glad to know there are other people who feel the way I do about Celiac Disease. I was diagnosed 4 years ago, and went cold turkey. I’ve had issues with cake and cookies, but wasn’t a huge bread person (is there such a thing as GF sourdough??), so that wasn’t a big deal for me. HOWEVER… my mother, who passed this lovely life on to me, refuses to acknowledge this life changing event. Three days ago she is telling me about a recipe for something including angel food cake. As I gently reminded her I cannot eat it, she snaps and says “why not!?” I tell her (for the millionth time) that I cannot have anything with wheat or gluten in it, as I get very ill. And I threw in that I don’t like spending a lot of time in the bathroom when I can socialize with friends instead. I am going to start my ADHD son on a 100% GF diet in a few weeks (he is visiting the family for awhile in another state). My family cannot understand why I need to “torture” him. Not only that, but they don’t get why I don’t want to come home for the holidays… they eat gluten everything!!!!! And seriously, make ZERO effort to make something for me. Apparently I am supposed to suffer in silence (relative: gas anyone?) or starve. Or bring an entire meal for myself. We do a bi-annual beach trip and I made my fantastic GF chicken tortilla casserole (so healthy… Greek yogurt, chicken, salsa-homeade, cheese, peppers, and corn tortillas) Everyone loved it! They couldn’t believe how good it was. And they were worried it would “taste funny” because it was GF.
One thing that annoys me the most is when people call Celiac “silly a$$” disease, as a play on the words. Do they not get that it is painful enough when they make the “poor you can’t eat real food” statements? I’m pretty sure meat, dairy, veggies and fruit are real food. And healthier than that over-processed crap they are stuffing themselves with.
Oh yeah.. my son is concerned about not eating pop-tarts. Well, using a GF pie crust mix and a lovely little thing called a Toaster Pastry maker from Williams-Sonoma, I am able to make him poptarts… with less sugar and junk than the real ones. Yay me!