The Gluten-Free Diet – Sometimes it just Sucks

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Sometimes being forced to be on a gluten-free diet just sucks.  There’s no getting around it.  I wish I could run out and grab a slice of pizza or get a sandwich at my favorite deli for lunch.  I wish I could have eaten all of the amazing pastries and baguettes in Paris.  I wish I could have eaten the donut pictured above. I want to eat crepes in a restaurant.  I want to be able to order toast with breakfast at any diner.  I wish I could eat a pretzel croissant – I want to eat at the new Momofuku Bakery and Milk Bar, heck I want to eat at the original Momofuku.

Yes, I ate amazingly well and completely gluten-free in Paris.  Yes I can eat gluten-free pizza at multiple restaurants in Manhattan.  Yes, there are gluten-free croissants and even gluten-free ravioli.  Yes, I have had more amazing food experiences in the last 4 years since being gluten-free than I ever had previously.  Sometimes I just want to be able to eat a Twinkie or a box of Wheat Thins (of course I haven’t eaten a Twinkie since I was in elementary school, but somehow knowing that I won’t ever be able to eat one again makes me mourn the loss).

In the last year I have become so adept at eating/living gluten-free it has started to seem less like a burden, but it still is really hard sometimes.  This week was particularly rough.  A friend offered to make me dinner on Thursday.  He had cooked the same dish successfully for me before so I let my guard down and didn’t rehash the do’s and don’t’s of ‘gluten-free’.  When I arrived at his place the ribs I had been dreaming about were smothered in a fragrant homemade sauce I remembered so well from this summer.  Just as we were about to eat I double-checked with him all of the ingredients.  “It’s the same as what you made this summer right?”

“No, not exactly, I don’t really work from a recipe.”
Oh no, my heart sank.  I couldn’t bear another dinner like Jeff’s.  Hold on, I told myself, it’s probably fine.  “What’s in it, just to be sure?”

The first red flag was fish sauce.  While most fish sauces are gluten-free, I held my breath as we checked the bottle.  It was fine, phew.  The rest of the ingredients were gluten-free.

“Oh and I added a little hoisin sauce at the end” he said.

Then I knew, the amazing ribs, smothered in sauce were just going taunt me.  As we looked at the ingredients, there right on the bottle were the words I dreaded: “WHEAT FLOUR.”  I wanted to cry.  I normally am so good at planning ahead, but when we had had the ribs this summer he didn’t pre-sauce them so everyone was able to put the amount they wanted.  I figured even if the sauce wasn’t gluten-free I would still be able to enjoy the smoky meat falling off the bone.  But alas, it was not meant to be.  He still managed to pull together a great spread of prosciutto, chipotle and cinnamon-spiced sweet potatoes and an arugula salad with toasted walnuts, fresh parmiggiano reggiano and homemade vinaigrette all of which were gluten-free and delicious.  So while I didn’t leave hungry, it was a blow to my spirit.

Less than 24-hours later I encountered another difficult eating situation.  I had a work lunch at 12:45pm.  Now most work lunches aren’t a problem.  As long as a restaurant is somewhat upscale I can usually find something and it tends to be great for the most part. Well, the location hadn’t been selected until an hour beforehand so by the time I got to look at the menu it was too late – a soup and sandwich place, again my heart sank. The focus of the restaurant was bread and luscious gluten-filled soups.  I didn’t have time to reach anyone to ask for a change of venue or to grab something to eat in advance.  When I got to the restaurant it was so crowded inside it was tough to move and there were throngs of people waiting for a table.  Our third guest arrived late so there really wasn’t enough time for us to change restaurants so I had to sit and watch as they ate the most amazing French onion soup I have ever seen/smelled.  I usually don’t have that much of a problem sitting at a table while other people eat, but I had already been so demoralized by the previous evening that this was just too much.  I fought back tears and tried to silence a rumbling stomach as we talked business.

I had a great dinner later that evening, shared with a roommate from college.  It helped me feel better after the dreadful lunch experience.

In general I am a really positive person, but sometimes it really just sucks to be gluten-free.  What has been your most frustrating dining experience since going gluten-free?

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Samantha said,

December 7, 2008 @ 5:43 am

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?

Teri said,

December 7, 2008 @ 1:35 pm

Thank you for saying this!! Yes, it does! And I’ve had numerous occurences where I’m out and about and run out of food and can’t find a thing to eat except a lettuce leave with oil and vinegar. Yes! Sometimes it does just suck. I think it’s good to acknowledge that. Thank you for saying what we’re all thinking! (It’s not like this all the time, obviously…but sometimes).

Katya said,

December 7, 2008 @ 1:46 pm

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.

Shirley said,

December 7, 2008 @ 3:46 pm

I know exactly what you are saying. I would have been heartbroken about not being able to eat those ribs. It would have been so easy for them to be GF, like when you’d had them before.

My most recent bad dining experience was eating at my mother-in-law’s for Thanksgiving. As soon as we sat down, she announced that she had bought a special bread for me to eat, one that is for gluten intolerant people. You probably guessed already what it was … spelt bread. So I hat to tell her how sweet that was to think of me, but spelt is still wheat and not safe even though … before I could finish my statement, she cut me off and said in a whiny voice, “Well, I triiiiieeed.” That’s what irritates me … when the whole issue is turned against me like the other person is the victim. I don’t ask for special consideration or accommodations at my MIL’s. I usually just eat what I determine to be safe and take things I know I can eat safely and all will enjoy. Ironically, I ended up getting sick anyway as apparently there was a glaze on the ham that contained wheat. There was more discouraging food-related “stuff” that happened there as well, but I won’t get into it.

Two days later, I attended a family baby shower (again husband’s family). There was nothing I could eat, nothing. The event wasn’t about me, of course, but with men and women being there and tons of food for everyone else to eat, it was very discouraging. I have always been far more considerate in taking care of people I knew had food intolerances or even preferences, long before I went GF.

Usually I do so great, so these incidents are not the norm, but they are upsetting at the time. Serving GF food doesn’t have to be hard.

Susan said,

December 11, 2008 @ 3:24 am

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.

Karen said,

December 11, 2008 @ 4:09 am

The hardest part for me is that my own mother doesn’t get it. She still insists that “a little bit won’t hurt you”. She gets very offended when I don’t eat at her house, so I just don’t go.

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

December 22, 2008 @ 4:38 am

[...] 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 [...]

Jennifer said,

December 22, 2008 @ 11:10 am

I’ve been learning that all those things I thought I would never have again are being created somewhere and I just need to be patient and I will find them. For example, Twinkies. The gluten-free bakery in Phoenix, AZ has a version- http://www.glutenfreecreations.com They call them Winkies.

Holly said,

December 31, 2008 @ 6:53 pm

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.

Heatha said,

January 6, 2009 @ 1:55 am

I can eat gluten but my husband can’t. Whenever we can at work and family functions, we make sure to bring something that everyone can enjoy and that is safe for him to eat (or he just brings his own provisions). The most frustrating experiences are when people continue to insist on making him eat something even after he carefully explains that it will make him quite sick. It is the same people, who repeatedly make a big, embarrassing fuss and go on and on about “how bad they feel”. (As Shirley said above, making themselves the victim, like he does it just to annoy, not to take care of his health.) In the meantime, they take absolutely no effort to effectively educate themselves about what gluten free food are available. The scenario repeats at the next function. This has been going on for years. I just wish these people would either take it seriously enough to actually get it straight (and listen to and retain what we tell them) or just let it go if they don’t want to put in the effort. You do have to be deliberate and selective, but incorporating GF items into a menu is not rocket science.

Susan Mason said,

January 9, 2009 @ 4:35 pm

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.

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March 9, 2009 @ 5:24 am

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Christy said,

March 26, 2009 @ 7:01 pm

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…

Karen said,

March 31, 2009 @ 8:15 pm

My son and I are both GF and I get more frustrated for him than anything. He’s 4 years old and it is so hard for me to have him go to a friend’s house to play. I have one “friend” who understands it all and I just bring dinner or snacks with him. The last time he was there she told me they were having hot dogs so I brought my son’s cooked etc so she wouldn’t worry about it. When she made the hot dogs for the other kids she made them into Octopus hot dogs. so there’s my son eating his plain boring hot dog while her kids and my daughter are eating a really cool looking octopus! UGHHHH! He handles it great and I probably get more defensive than I need to but WHY on earth would anyone do that to a 4 year old!!!!

paula said,

April 27, 2009 @ 3:50 am

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

Donna said,

June 4, 2009 @ 8:52 pm

I’m just starting to accept my gluten=free fate. I have been good with my diet and now that I feel better-I’m getting bitter. I’m happy that I can heal without surgery or a prescription with possible side effects..but the planning for meals leads to dwelling on whats missing is a killer.

My husband, family and friends have all been understanding ((my friends made an entire gluten-free dinner party for me and it was amazing) and do everything they can to make it better. I can’t complain there. I’m just in mourning for my old diet and favorite foods.

A bright spot- one of my favorite places to go is GF- Rosa Mexicano. If you like Mexican run-don;t walk. I don’t have to watch what I eat or worry if there will be something for me..they are the best!

dotslady said,

June 29, 2009 @ 12:27 pm

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!)

Andrea said,

June 30, 2009 @ 9:19 pm

I had three birthday parties to attend the same week I found out I was gluten free. Which was last week. Everyone was raving about the cake that I made for my son and I couldn’t eat a bite. Then at the next pizza party, I sat quietly eating my rice dish. For the next party at my mom’s house, her boyfriend made homemade pizzas. I found a bakery in a nearby suburb and bought a GF pizza crust. I also bought a sauce I could eat. I got to the party and realized I had forgot my special crust. I was able to eat the cut-up veggies with some iceburg lettuce. My mom didn’t have a salad dressing I could eat or vinegar. So I had my salad with olive oil and pepper and everyone sat around my with their homemade pizzas and then birthday cake. Then they all said how horrible it is for me to be gluten free and how I can’t eat the good stuff. As if I need them to tell me that. I have wanted to cry for this whole first week of my gluten free life. I haven’t yet, only because I am excited that I am already noticing the positve effects on my health.

Jacqueline said,

July 5, 2009 @ 4:21 pm

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!

Lynn said,

July 26, 2009 @ 8:53 pm

Worse for me was a non eating event that some one brought in hot soft pretzles. I found myself going into a panic attack which was visiable to those around me. Worse was when I almost decked an 80year old for pushing cake at me. My extreme reaction is unsetteling

Sheila Nelson said,

August 12, 2009 @ 8:44 am

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.

Hannah Green said,

August 17, 2009 @ 10:43 am

I have been diagnosed as a coeliac since I was 3 so I havent really missed to much since I am not used to eating any other way. Saying that i discovered this morning that the antibiotics i have been put on for a week contain gluten!! Apparently for this particular infection only the gluten filled ones will work so i have no choice but to suffer the consequences… Really the thing i find annoying to miss is birthday/ wedding cake at peoples parties.

However i have just completed a 6 month trip travelling around the world (india, nepal, thailand, cambodia, malaysia, singapore, new zealand, fiji and the states) and pretty much managed to be gluten free the whole way with only one or two slip up. Figure if i can manage that i can stop feeling grumpy about a little piece of cake.

ps would really really really recommend going to new zealand for your next holiday it is literally coeliac heaven! Every single bar/ restaurant and cafe keeps gluten free bread in stock and also has gluten free menus!x I had my first ever panini there ! Very nice!

Joanna said,

November 19, 2009 @ 7:27 pm

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!

Tiffany said,

December 29, 2009 @ 5:25 pm

Like you Catherine, I usually have a very positive outlook about my gf lifestyle. I only had anemia as a symptom so going gf was quite a shock in the beginning. When my energy level skyrocketed after a few weeks, that was enough to keep me faithful to the diet. We eat out often, mostly avoiding the boring chains with gf menus and I’ve only been glutened three times in almost four years. Still, there are times when I see the drive through pizza joint next to my mainstream grocery store and I wish I could just pull up and order a gf pizza there like others can order a gluten one. It’s the inconvenience that gets to me at times.

We don’t have kids and I honestly don’t understand how people that do can manage this lifestyle without pulling their hair out. I love doing research to find out about new products and places to eat but most people don’t have the time for that. I too have eaten better quality and tasting food than when I ate gluten and for that I’m really grateful. There is a woman in my home town that was dx’d with Celiac in the 70′s. She ate a LOT of Fritos corn chips….there was no Everybody Eats, Joan’s Bagels or Udi’s. At least we’ve come a long way since then!

Jessica said,

February 1, 2010 @ 6:52 pm

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.

Jan said,

February 15, 2010 @ 12:13 am

Yes, sometimes being gluten free is difficult, but isn’t it so much better than being sick? My son & I are both gluten intolerant, diagnosed almost 4 years ago now, and you just have to plan ahead and bring food everywhere! It is not worth my health to depend on other people to “get it”. It’s taken a long time for us to completely understand the gluten free diet, how can we expect somebody to do it properly just once in a while?

Ginger said,

February 16, 2010 @ 5:36 pm

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!

Nicole said,

February 24, 2010 @ 7:16 am

I have what is called latent celiac. My blood test was positive and my biopsy was negative. After years of being told that I just have IBS, I decided that I should go gluten-free. I know that it is going to be a struggle but I see is as an opportunity. I went to culinary school and am going to school in the fall for chemistry so I’m hoping to be able to help people who are more sensitive to gluten than I am. My symptoms are fairly mild compared to other people and I know that I can get away with some gluten (such as in sauce or dressing) but I want to try to follow my diet as best as possible. I’ll be experimenting with my own recipes as well because hey, we all love to eat!

My first recipe will be pizza (my family has a pizza shop so I’ve grown up eating really good pizza). Next, I am going to try gluten-free Twinkies. I’ll be sure to post my recipes if they work out.

Louise Bryant said,

March 7, 2010 @ 2:27 am

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.

Jennilee said,

May 21, 2010 @ 4:20 pm

Well I make it twice as hard on people because because I have been a vegetarian since 2001 and just recently (as in a few months ago) went off of gluten. I would have my dissapointing moments as a vegetarian, like at a church leadership meeting they provided subs…I was like, ‘ok guess I am having chips’. Now I do feel bad because my friends want to go out and they always make me decide because I have the most food restrictions.
I didn’t use to be as careful about avoiding gluten until I got really sick recently. I forgot that soy sauce has gluten in it and I ate a lot of chinese food. It was the worst experience to day, and it lasted almost 48hrs. Now that I am taking GF really seriously, I do find it frustrating that I have to research ever place I go, and even brands of food. But I am still thankful that I can find stuff even through it’s harder.

It Changes Everything | Stay Gluten Free said,

June 4, 2010 @ 6:42 pm

[...] 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 [...]

Shelley said,

June 10, 2010 @ 8:36 pm

Hi!

Great post! Kinnikinnick has an article on their blog about food and non-food products which have gluten “hidden” within them – like soy sauce and sun screen! Some good food for thought… http://blog.kinnikinnick.com/. Thanks, Shelley | Kinnikinnick Foods

Carin said,

July 5, 2010 @ 5:15 pm

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!)

Nancy said,

July 6, 2010 @ 11:56 pm

I started bringing things to my Mom’s house so she could see what things I could eat. She is better now, and she seems more patient and consults me for the holidays. You may have to try that, like bring a potato dish or make a salad with quinoa ( I oven roast the vegies and then make a homemade olive oil and vingar dressing to toss with the quinoa and veggies.)i have also had my parents over for gluten free meals, and we talk about the foods I can eat more often.

Courtney said,

July 16, 2010 @ 6:54 pm

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.

Jo said,

July 20, 2010 @ 5:14 pm

I had a very bad experience with a GF mother and son who attended an informal playgroup many years ago. The mother became angry any time someone passed out a treat, and never took part in food planning for the parties but expected everyone to just know they should only bring gluten-free foods. Now my 7 year old is GF, and I have her bring a lunch bag of food for her to eat wherever she goes (birthday parties, sleepovers, playdates). I just tell people she “comes with her own food” because I don’t want to be difficult like that mother, AND I don’t want her to end up sick. My dad is GF, and when he comes over, he appreciates any efforts I make with meals to be GF, but absolutely doesn’t expect anything. If we are eating something he can’t have, he just finds his own food nicely, and it is great. I think this attitude is important! I’m sorry if people are weird about the diet- try to turn it around.

Mar said,

September 13, 2010 @ 11:24 pm

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”.

Joanne Cataldo said,

September 18, 2010 @ 6:05 pm

The best thing about living gf for these last ten years, after not being sick ALL THE TIME, is that I’ve become a really good cook…forced to learn to replicate many foods I love but can only eat if I make myself…the worst is eating out..being GF has really sucked all the joy out of the restaurant experience..now, instead of looking forward to a new culinary adventure, I just hope to make it through without suffering any consequences later! Travel can be difficult as well…Celiacs are probably the only people who lose weight on vacation! I have to say things have gotten remarkably better over the last few years. I never thought I would be able to order a beer and pizza again never mind at a local restaurant (Stone Hearth Pizza – Needham, MA)…and my last couple of trips were a lot easier than I had expected, especially Dublin, Ireland….It is tiresome always having to check labels, always having to ask questions the answer you don’t usually want to hear, the only reason I don’t “cheat” is that unlike diabetes or other chronic diseases you pay the price of eating gluten immediately and it is never ever worth it.

Rebecca Vanderloosen said,

September 27, 2010 @ 1:31 pm

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.

Gina C said,

September 27, 2010 @ 9:31 pm

Well I wish I could eat eggs for breakfast like I use to before I doubled over in pain. I wish I could eat whole grain bread without running to the bathroom after hours of bloating and pain. I wish I could eat a salad with cheese with regular dressing. I wish I could eat butter. I wish I could eat raw apples or pears. I wish I could eat popcorn or oatmeal. I wish I could eat pasta or meatballs with breadcrumbs. My list keeps getting longer………….. Eating out is a journey in who will abide by my restrictions and who will send me to the bathroom in an hour. Frankly, after suffering for years and having it progress to the point of not leaving my house. I now feel GREAT compared to what I use to feel. I still get that way but then I re-evaluate what I ate and of course don’t eat that again or go to that restaurant. I try to eat only cooked veggies, plain meat/fish and certain fruits.
I just wish that they would make sugar/fat-free gluten free products. :-)

Tania said,

January 15, 2011 @ 8:29 am

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)!!

Kristian Hayward said,

February 9, 2011 @ 1:43 am

Great post! I’m 15 years old, and was diagnosed with Celiacs on MLK day this year. It has been really hard, especially having to explain to ALL of my friends what it is, etc. I’m glad to know that crying about this is normal, because it’s been pretty hard fighting back tears. I was at a friends house for a party, we were playing a video game, and they served pizza, pasta, salad, and brownies. It was very hard for me to fight my tears, but I managed to do so. Even in the classroom, we finished a test and as a reward our teacher brought us doughnuts. Everyone was excited and asked me why I didn’t take one, as I usually would. It’s nice to hear other people’s situations. Thanks a bunch guys.

Nathalie said,

February 19, 2011 @ 7:53 pm

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! :)

Martha Richards said,

April 22, 2011 @ 11:25 pm

wow, I stopped looking at GF blogs until tonight when I was looking for GF beer recipes. I hate the word S*ck, but the title fit how I was feeling but not expressing. Anyway, oh, the pain, I try to think how lucky I am (DX 2007 and was really sick), but sometimes I wander off on to the times I could have a micro brew, a fish sandwich and fries, and I want to cry. Then, I think of how good quinoa is, and I still want to cry, ha, ha. Actually,Quinoa is great, but, really, most people who see you eating this at work think you are crazy. I guess that is what makes it harder, as you have to hide it, or just try not to be noticed while others are eating this great stuff. For those who have lots of trouble, check out SCD diet, specific Carbohydrate diet, it is also known as cave man diet, it helps in the beginning stages to heal your gut.I actually crave the stuff now. Teenage lady, my heart goes out to you, but it is OK, you will figure it out, be stronger for it, and others who have this will be drawn to you. And for all, it really could be a lot worse. But then, there is that Twinkie that I never really wanted until now. Only kidding, kind of.

Julie said,

June 9, 2011 @ 9:49 pm

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!

Keely Guide said,

December 1, 2011 @ 6:02 pm

Thank you for this post. I could really relate. Sometimes food just looks so good, it makes me want to cry when I can’t eat it. And, sadly, I live in a place where gluten-free offerings are a rarity. As in, non-existent. When I ask if something is gluten-free, people look at me like “What the heck is gluten?” Maybe I should move to New York. Sometimes a girl just wants to eat out.

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