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137 Comments

  1. 1

    LW

    You nailed it with spontaneity. I also miss cheese desperately. Oddly, I don’t really miss anything gluteny – just cheese. One day I hope my guts will let me have dairy again :(

    Reply
    1. 1.1

      Sybil Nassau

      All Cabot cheeses (an many others) are not only gluten free but lactose free as well– AND, unless you have a dairy or lactose problem, you should be able to eat most cheeses- they are not inherently a problem. Usually, once the villi heal, many people can eat dairy once again.

      Reply
  2. 2

    zz

    How about spontaneity, spontaneity, and spontaneity? It really is the root of what I miss these days. So much of my life, whether traveling, eating out, or socializing revolved around off the cuff moments. Everything now has to be meticulously planned. And, my reward for that all that planning was getting horribly glutened last Friday night. Why even bother? It’s starting to suck the life out of me and I’m only two months into this crazy, new life.

    Reply
    1. 2.1

      Thankful for Whole Foods

      Zz…hang in there! You can do it! Never give up! (Thought I would post 3 cheers for you and anyone that is frustrated right now!)

      Reply
      1. 2.1.1

        zz

        Thanks for the pep talk, TFWF. It was very sweet of you. I’ve just got to keep telling myself that failure is not an option.

        Reply
    2. 2.2

      Melanie

      It gets better. I got diagnosed in 2010. I’ve figured out *exactly* which local restaurants I can safely dine at…and which websites I can trust for analysis. Haven’t been glutened in almost a year. It does get old keeping one’s guard up. :/

      Reply
    3. 2.3

      Sybil Nassau

      All Cabot cheeses (an many others) are not only gluten free but lactose free as well– AND, unless you have a dairy or lactose problem, you should be able to eat most cheeses- they are not inherently a problem. Usually, once the villi heal, many people can eat dairy once again.

      Reply
      1. 2.3.1

        Khugs

        Reminder: “Most cheeses” – except blue cheese! (Grrr…) I was so bummed when I first heard the “blue” (aka mold) was likely grown on a grain (more specifically, wheat)

        Reply
        1. 2.3.1.1

          Sybil Nassau

          Guess you didn’t get the notice: you CAN have bleu cheese IF is made in the USA. France is the only place where it is grown on wheat. But not here. So as long as the package says USA– it’s ok.

          Reply
  3. 3

    Cari

    Spontaneity, shopping without reading labels, and anxiety-free eating, especially at gatherings.

    Reply
  4. 4

    Tonja

    I miss going to Asian buffet and mostly crab rangoons.

    Reply
  5. 5

    Laura

    I miss being able to just grab something to eat and not have to worry about it; grabbing a snack out of the cupboard without having to make it myself first.

    I miss grocery shopping without having to read every single label for ingredients.

    I miss pastries and junky frozen pizza. That stuff makes the best cold-pizza-breakfast!

    Thanks for the rant – it’s hard to always try to be positive and try so hard not to think about it all the time and let it affect your mood. Sometimes it feels good to just whine and complain about it!

    Reply
  6. 6

    Christin

    Yes yes yes! Same here. EATING ANYWHERE I DAMN PLEASE is definitely #1. I used to get overwhelmed and a little annoyed by having SO many options on a menu and now I so miss that. And just the thousands of restaurant options as well. And my Celiac came on abruptly and severely so it was a huge blow to all of a sudden have to change years of never really having to worry about what I ate. Some occasional indigestion was all to being quite ill almost overnight. I’ll never forget the level of depression I was in for a good two years. I had crying fits daily for a good year. Grieving my once healthy body and spontaneous lifestyle.

    I also severely miss a juicy burger on a soft spongey pub bun AND fried maple bar!!

    Ok I’m going to go have a crying for now! 😭😭😭

    Reply
    1. 6.1
  7. 7

    Tia

    Agree with everything above but mostly these:

    custard filled donuts with the chocolate icing on top. yum!

    real pizza.

    and eating out (w/o having to worry), whether at an event, dinner with friends or travelling!

    Reply
  8. 8

    Beth

    1. Being able to eat in any restaurant or at someone’s home.
    2. Pizza.
    3. Peanut butter and jelly sandwich on real bread that doesn’t crumble when you touch it, isn’t full of holes, or doesn’t taste like wet paper towels.

    My husband asked me recently “What do you want for dinner?” I said, “My grandmother’s macaroni and cheese.” Which, of course, I can’t have because she has passed away, and I can’t eat the cheese, cream, or the macaroni anyway. It would be easier if there were a direct correlation between not eating those and feeling great, but I don’t eat them and still don’t feel great, so it doesn’t really make sense, but I guess this disease doesn’t.

    Reply
  9. 9

    Deb

    I miss: 1) not having to read every word of every package for everything I buy; 2) not having to explain why I am not eating at the work function/wedding/wake, etc.; 3) peanut butter filled donuts.

    Reply
  10. 10

    Brenn

    I agree with everything — spontaneity is gone. I once went to a baby shower luncheon and ate olives. Just olives. The rest of the guests enjoyed crab cakes, coconut shrimp, mini sandwiches and a delicious-looking Italian cream cake. Did I mention I JUST HAD OLIVES. :/

    Sorry, I digress.

    Let’s all take a moment to remember an old friend that I can’t associate with anymore — A warm Krispy Kreme.

    Reply
  11. 11

    Amie

    Twizzlers, Twizzlers and Twizzlers

    Reply
    1. 11.1

      Laura

      I know it’s not the same thing, but “gluten free on a shoestring” has a recipe for those! I haven’t tried it yet, but it’s on my to-try list.

      Reply
    2. 11.2

      Sybil Nassau

      All Cabot cheeses (an many others) are not only gluten free but lactose free as well– AND, unless you have a dairy or lactose problem, you should be able to eat most cheeses- they are not inherently a problem. Usually, once the villi heal, many people can eat dairy once again.

      Reply
    3. 11.3

      Sybil Nassau

      Not all Twizzlers are bad check the label- strawberry are purportedly ok

      Reply
    4. 11.4

      Sybil Nassau

      Not all Twizzlers are bad check the label- strawberry are purportedly ok
      Info on bleu cheese is mis leading. The stuff from France is almost always is grown on wheat. HOWEVER, American-made bleu cheese is NOT, and is gluten-free- so check labels.
      Several common themes here, but I will leave it up to Dude to figure out that one! Turns out we all miss the same thing! Besides Pizza and Chinese food, I miss stuff like fried clams or fried scallops- living on the CT shoreline, there is no one making it–except Woodman’s in Essex MA. a 3 hour trip from here. We do have lots of lobster rolls and, until very recently, not a decent roll but that has changed with the opening of a fantastic gf bakery.!!!

      Reply
      1. 11.4.1

        Libys

        Did you know that all Cabot cheeses are gluten free AND lactose free?

        Reply
        1. 11.4.1.1

          Sybil Nassau

          See my comment at 11.2 above- not ALL Cabot cheeses are lactose free but all ARE gluten free. Check the labels as the fat-free, low-fat cheese are not lactose free. The higher the fat content of a dairy product, the less lactose.

          Reply
      2. 11.4.2

        libys

        Did you know that all Chabot cheeses are gluten free AND lactose free?

        Reply
  12. 12

    CollegeCeliacs

    1) bagels 2) deli rolls 3) French bread ….can you tell I miss bread? Spontaneity is a GREAT one, planning everything out gets tiring after a while *sigh*

    Reply
  13. 13

    Diane

    Extra sour sour dough French bread from San Francisco, donuts, real pizza crusts.

    Reply
  14. 14

    Jenna

    1) Since I was diagnosed at 7 years old, I don’t really know any different, but when I was a college student and now as a “real” adult living on my own, I really struggle with grocery shopping. Sometimes you just want to be able to pick anything off the damn shelf. Anything you want. And you cant.

    2) Local Food truck festivals and just wanting to indulge

    3) Not feeling like a burden when traveling with friends who try to be spontaneous, and have to deal with me planning out our every meal.

    Reply
    1. 14.1

      Alysa

      Yes! Food Truck Festivals. That would be nice.

      Reply
    2. 14.2

      Sophie

      The whole not feeling like a burden thing would be nice. Half the time I go out to eat with friends and just don’t eat at all. Once I was at someone’s house later than expected and dinner was a nightmare… I didn’t want to eat but obviously that wasn’t an option. Other than that and spontaneity, I don’t miss much because I was diagnosed so early.

      Reply
  15. 15

    Linda

    Good southern biscuits, especially Biscuitville. Spontaneity is definitely huge but I am a planner by nature so I always plan ahead. Would love to shop without having to read labels. The older I get, the smaller the prints gets.

    Reply
  16. 16

    Debby

    1) “eating out anywhere I damn please” – yes, Dude, this makes me crazed and for me is by far the worst! 2) the inability to eat lovely food during international travel and having to take the damned celiac cards (though I am glad they are available) with me and announce to the world each time I eat that I have celiac 3) bread – GF bread is really not worth it and to quote Linda above “good southern biscuits.” Oh how I miss them!

    Reply
  17. 17

    Rachel

    Craft beer, potluck meals, and the easiness of my previous lifestyle. 😫

    Reply
  18. 18

    Rhiannon

    After 12 years, not much phases me anymore. Other people sometimes become uncomfortable and pity me, but it really isn’t a big deal. What does bother me, 1) ignorant people 2) inconsiderate people 3) people that make me feel like I’m an inconvenience or a burden. For the most part, I just stay away from those people and I’m fine, but some of them are family, so that’s the tough part. Although there is a great deal of ‘icky’ stuff surrounding gluten free, I am also thankful for the options I do have today as compared to 12 years ago. I constantly have to remind myself of the positives, especially when there can be so many negatives. :)

    Reply
  19. 19

    Sara

    DEFINITELY miss:

    1. Being a foodie (I mean, I live and Chicago and cutting off food trucks was the WORST).
    2. Being anxiety free on road trips.
    3. Deep dish pizza (lactose intolerance keeps me from even the good GF ones).

    Reply
  20. 20

    Jennifer

    I’ve made peace with it as well, but since you asked…

    1) I miss the adventure of new restaurants without worry especially when on vacation. It was exciting to try new things and eat food that was different from what you were used to. I never gave a thought to anything but enjoyment before. I also miss not having to interrogate my waiters and waitresses. I don’t try to be difficult and sometimes I still feel like a complete bother when ordering.

    2)I miss good pizza. And crappy good pizza. I was a pizza addict before. Pizza Hut or Italian restaurant…I love pizza. GF crust is still lacking in most cases. I’m sure there is fabulous GF pizza somewhere, but not where I live.

    3)Biscuits and gravy. Light, flaky, buttery biscuits with a southern white gravy or with butter or butter and jam. Yum. I have found a reasonably tasting GF biscuit, but it is more like a hockey puck in texture :(

    Well, it was nice to walk down memory lane. I still have my “I wish” moments, but they are few and far between now.

    Reply
  21. 21

    Jennifer

    1. Guiness
    2. Real Pizza
    3. A Real Grinder, hard crispy bread and all :-)

    And of course being able to eat whatever I chose, or eat wherever I wanted without worry that they would have something on the menu that was safe.

    Reply
  22. 22

    Shannon

    1 Being Spontaneous

    2 Real Pizza!!

    3 Eating out going to parties without worrying !!

    Thank you Dude I feel better knowing we have the tribe you have helped so much 💋

    Reply
  23. 23

    Rachel who rocks

    1. DELIVERY. I hate cooking, y’all, and delivery was my friend. Thursday night was pizza night. Order tacos in with the boyfriend? Or maybe order some delish thai food with my bestie? Yes, please. Since I can’t look the order taker in the eye and detail exactly what I need to happen for my food to be safe, delivery is no longer a viable option.

    2. Baking. I loved baking. I even made my own bagels! I was the queen of brownies. Christmas cookies were my jam. Now it’s all almond meal and garbanzo bean flour and, let’s be real, it’s not the same. I don’t miss eating the foods I used to bake, surprisingly, but I miss baking and sharing them with friends.

    3. Privacy. I can think of little else more boring than talking about food. Seriously. But now, I have to talk about food ALL THE DAMN TIME. Want to eat in a restaurant? Oh, let me tell this perfect stranger about my very personal autoimmune disease. Getting glutened at work because the shared kitchen space is a war zone? Yes, I very much wanted to talk to HR about an accommodation. And my boss really needs to know that my brain goes foggy and depression roars into life if I ingest even a crumb. I don’t want to TALK about it anymore, and I don’t want to SHARE information anymore. I just want to BE.

    Reply
    1. 23.1

      Laura

      I have never really done delivery, but your other 2 points are bang-on for me. I used to be the queen of baking, too, and after Celiac hit just over 2 years ago, I had a really hard time with basically re-learning how to bake. Recently, I also have to be dairy free among other things, and baking is almost out of the question now :( It really sucks, is kind of depressing. Baking was/is my way to be creative, show people I love them by sharing my creations, and relieve stress from my day. Also just a fun hobby to do on Saturdays. I’m thinking of turning to candy and chocolate making instead. I’ve never done it before, but I know I can eat sugar and cocoa! hahahaha

      Oh, and the privacy thing – totally! My boss’ kids have Celiac, so she gets it, but it’s still not fun when I get reprimanded at work for not really ever doing a good job because my body/brain are still messed up :( I’m job-hunting now for an easier job, which is kind of disheartening. But, at least I won’t be as depressed and anxious about work, right?

      Reply
    2. 23.2

      Melanie

      Preach. It’s all so veryvery boring.

      Reply
    3. 23.3
  24. 24

    Lou

    Real ale from my lovely local pubs (post diagnosis a craft brewery has opened about 200 m from my door, makes me cry a little on the inside every time I cycle past….), street food, ease of travel and food……..

    We have great gf pizza nearby – anyone visiting Edinburgh, try Mamma’s Pizza. Superb. Better than I remember the gluten ones being!

    Reply
  25. 25

    Gretchen

    Just 3? First, Chinese food that I didn’t make myself. Second, Pizza (recurring theme there). Third, traveling without the stress. So sick of salads when I go to a great restaurant.

    Reply
  26. 26

    Stephanie

    Eating out now requires more research than I did for my Master’s Thesis.

    I miss spontaneity the most.

    But, I am much healthier now.

    Thanks Gluten Dude, for all you do for us!!

    Reply
  27. 27

    Lacey

    1) Krispy Creme Donuts — Oh how I miss you

    2) Auntie Anne’s soft pretzles… just the smell of them is enough to make me made now. I want to gobble them all up.

    2) Planning a vacation and not being anxious the entirety of all the months leading up to it, wondering if I’m even going to feel up to going on the vacation and having fun and having to spend hours online researching local restaurants to see if there are any even worth trying to risk it, and hating how much of a burden I’m going to feel like on the rest of the people going with me (even though they don’t treat me like a burden and are wonderful about making sure I feel safe… I still feel like a burden. The damper on the party — let’s go eat here! can you eat there?? No……)

    Reply
  28. 28

    Kathie J

    1. SPONTANEITY everywhere…restaurants, dinner at friends houses, stopping in for a drink and a snack at the local bar
    2. BEER … micro breweries were just starting when I went GF (then DF and sugar free…corn and soy too…not even sure I could have a GF beer?)… Yuengling was my last known favorite…would love to go to a Brewfest and actually TASTE the beer and not be a DD
    3. TOSS UP BETWEEN TAKE OUT PIZZA AND CHINESE FOOD AND ICE CREAM OUT

    Reply
  29. 29

    Holly

    1-For sure, spontaneity. And not worrying about it all the time.
    2-Fried chicken. I know I can make it at home (we do! And my husband is really good at frying perch as well!). I know it’s not good for you, but we always liked picking some up for a picnic on the boat. I really miss being able to just go and pick up snacks/lunch/dinner wherever we ended up on our boat ride.
    3-Beer. Not craft beer (I hate breweries) but good old fashioned cheap beer…Coors Light or Bud Light at the end of a hot day of work.

    Reply
  30. 30

    Katrina

    Not having to explain why I can’t have what has been lovingly made for me…

    Cheese

    Not having to plan EVERYTHING…

    Thanks Gluten Dude, for all that you do!

    Reply
  31. 31

    maggielynne

    Spontaneity, definitely! But I love that I was the one to connect the dots over 28 years from my first symptom to being diagnosed at 63 years of age. My family history alone should have alerted one of the doctors I have seen over the years. I also love the challenge of finding the ultimate replacement for my favorite foods… of course many that I have to make myself rather than finding them at a bakery or restaurant. The latest being the best chewy chocolate chip cookie recipe from My Gluten-Free Kitchen…. changing it by using Mama’s almond four blend and part European butter!

    Reply
  32. 32

    Sio

    1) Going out and getting craft beer from the tap.
    2) NY pizza and bagels
    3) Being able to go anywhere and just order what I want without having to question everything..

    Reply
  33. 33

    FEW

    Hard to narrow this down to just three, but while just anxiety free eating out and travel would be at the top, I’m going to list three very specific items that I miss a lot:

    1. A Chick-fil-A chicken sandwich
    2. Olive Garden Breadsticks
    3. A moist, chewy cinnamon roll like Cinnabon

    Reply
  34. 34

    Hap

    1) TIME – all the hours/months/years I’ve lost in this 6 year odyssey so far:

    (a) figuring out everything involved with CD, DH, 3 types of cancer, etc. to stay as healthy as possible – just this morning emails with explanations and test / ct scan results to 2 physicians regarding my walnut sized salivary stone and debilitating left ear pain – CD the autoimmune gift that keeps on giving; and,

    (b) preparing each and every meal to stay as healthy as possible – except for meals Sweet Wife prepares for me when she’s here – after I had to stop eating out; and,

    2) spontaneity – eating out anywhere anytime any morsel I want to eat or drink – ice cold with ice chips craft beer comes immediately to mind (with a side order of restaurant bought pizzas, big juicy medium rare steaks, shrimp po-boys, and/or fried oysters, oh my I better stop before I pass out) – since the gf versions are not available in my jurisdiction and “The Revenoors” frown upon illegally importing my own through the postal system.

    3) GOLF with my buddies of 35 years while my body continues to heal from the above mentioned issues – they knew I was sick when I had to stop playing golf – oh yes I really miss those sights sounds and activities; and,

    4) oh sorry, only 3, I could go on but it might sound like whining…

    On the other hand, I’m grateful for GDude and all of his kind assistance durng this odyssey and still being vertical and ventilated on the green side of the grass!

    Reply
    1. 34.1

      LighthouseCeliac

      Hello Hap!!!
      Been thinking of you and all of your kind words a few years back!! You helped me through a very dark time coping with the anxiety of this all. You have gone through so much more than most of us combined. Thanks for being so caring, your advise has meant so much!!

      Reply
  35. 35

    Melanie

    Yup. It’s not the gluten-y deliciousness I miss most (though I *do* miss that!) It’s dining without fear. Spontaneity for sure. (SO tired of researching restaurants when we are traveling.) Dining at potlucks (I pre-eat of bring my own cooler–even if folks have made stuff that’s GF it gets cross-contaminated), and not having to quiz restaruant wait-staff within an inch of their lives.

    So, yeah. Those.

    Reply
  36. 36

    TXGal

    1) Shiner Bock beer (if you are from Texas, you know the saying: “There’s nothin’ finer than an ice cold Shiner!”
    2) Cinnamon rolls (especially the super bad for you cinnabon)
    3) The affordability and spontaneity of just whipping up my own (insert baked good here.) Now baked goods have to be planned in advance both for ingredients and how much money I can spend… Alternative flours are a lot more expensive than the organic whole wheat I used to bake with!

    I agree with everyone here who has mentioned being able to go out to eat. I haven’t been out to eat in months… You start to feel isolated because so much in our world revolves around food, and it is difficult when you have a food allergy or intolerance to something that most people consider a “fad diet.”

    Btw, thanks Gluten Dude… I emailed you a while back and I was on the fence about being tested… I finally bit the bullet and was officially diagnosed with celiac about a month ago, which I already figured I had, but just having the confirmation was sort of a load off of my mind.

    Reply
  37. 37

    Debbie

    I miss donuts, McDonald’s french fries, and spontaneity.

    Reply
  38. 38

    PAB

    Office treats
    Privacy (Always having to explain and re-explain)
    Beer

    Reply
  39. 39

    Treena

    Its very hard to narrow down to just three but hmmmm….
    1) You nailed it when you said “Eating out wherever I please”. That is probably the toughest one for me.
    2) Spontaneity and sharing definitely go hand in hand.
    3) Real baked spaghetti with cheese – no matter how hard I have tried to match the real spaghetti and real cheese it is just not the same. Its been 21 years since my diagnosis and I still miss it.

    On the one hand I may miss the above but I sure the heck do not miss being sick all the time. Most of my family and friends are pretty strict to make sure the gluten and lactose stay far away from me because they have seen first hand what I go or have gone through and for that I am extremely blessed!!

    Reply
  40. 40

    Sharon

    Spontaneity which to me includes eating out without anxiety
    I miss my own homemade sweet fluffy rolls I made for holidays
    Traveling without having to pack my groceries!

    Reply
  41. 41

    Lori - The Twisted Celiac

    I agree, the diagnosis of Celiac has been a blessing. I spent way too many years sick and battling with doctors that it wasn’t just IBS or stress causing this… YES I WAS STRESSED, but that wasn’t causing the severe pain, a career spent in the bathroom, and not being able to plan anything in advance…

    What I miss most…
    1) going out to eat or going to a friends to eat without stress and planning, just being spontaneous.
    2) a REAL pizza… some come close, but I miss the real deal
    3) Breakfast treats, including Donuts, Pop-Tarts, Hawaiian Roll French Toast

    Reply
  42. 42

    Natalie

    The three things I miss are:
    1. A real bagel
    2. Being able to go out to eat anywhere and order anything on the menu.
    3. Social gatherings where I can enjoy myself and not worry about what I am eating and making people crazy about it along the way.

    Reply
    1. 42.1

      Silver Ado

      I heartily agree with those three!!!

      Reply
  43. 43

    Jacqueline

    Hey Dude,
    Congrats on 600 posts!

    I miss the ability to choose whether or not I am vegan….had to start eating fish and chicken because my diet is so limited with all of the food sensitivities. Pizza

    I miss traveling…I don’t eat what I don’t prepare myself and I can’t imagine getting to the airport and having the TSA take away my food. Pizza

    I miss socializing…It all seems to be about alcohol and food…bringing my own has been the norm, but it’s definitely not the same. Pizza

    Reply
    1. 43.1

      LighthouseCeliac

      I travel up to twice a week. TSA is usually very understanding. Be sure your ice packs are frozen. Freeze any liquid food like guacamole or peanut butter, mashed potatoes. Put a note explaining you are severely food intolerant on your carry on and checked bags. Always ask them to change their gloves. If any TSA gives you a hard time ask for a manager, traveling with your own food just requires a few rules. I never eat anything unless I prepare it and make it in my kitchen. I travel just fine and always get a fridge/freezer and microwave brought to a hotel room that doesn’t have them in the room. So move about!! Come to Las Vegas I will cook for you!!

      Reply
      1. 43.1.1

        Jacqueline

        Thanks! What a gracious reply.

        Reply
  44. 44

    Chery

    1) Being allowed to eat what I want without having to explain to family and friends that the things they worked hard to make are either really not GF or simply not something that I’d ever put into my mouth.

    2) Being able to take a medication without fear.

    3) Being able to just live without thinking about and planning how to live with celiac all the time.

    Reply
  45. 45

    Lynn

    1. saltines
    2. eggplant parmesan (with good breading)
    3. convenience of eating out without the fiasco of finding something/someplace safe (even drive thru occasionally)

    Reply
  46. 46

    Boston Jay

    I miss not having to have a segregated kitchen; my family doesn’t keep GF, so contamination is everywhere.
    I miss a lot of fave foods and drinks, and moreso, the spontaneity to enjoy them with friends.

    But most of all I miss my pre-celiac-onset health; there are some things that won’t ever heal, no matter how long I keep GF, and that’s been fifteen years now. I miss the perfect teeth I had before I went fullblown – never even had a cavity, and now at 42 I’ve lost most of my molars to cracking from the inside out; due to celiac-related bone erosion I cannot get implants to replace them either. Never broke a bone pre-celiac either; it’s happened since. Cholesterol is difficult to manage despite a healthy diet, another celiac complication. I’ve developed lupus and Sjogren’s syndrome, two more autoimmune diseases – the known issue of having one autoimmune disease e.g. celiac making you more susceptible to others. Lupus almost killed me with blood clots in the lungs, now I have to be on anticoagulants.

    This is what makes me want to punch the “celiac made my life better!:D” people in the face. Not sorry.

    Reply
  47. 47

    MaryAnn

    Eating out anywhere and any thing at home, on a trip, at functions and parties, and with friends. Celiac isolates you from some of the gatherings, sharing homemade treats or trying new restaurants with friends.

    Always starting the conversation with the waiter/waitress with the words: Celiac glutenfree.

    Bread, rolls, pastries, cakes and especially croissants in Paris.

    Thank you for your blog

    Reply
  48. 48

    Khugs

    Pizza, Pizza, Pizza!

    Haha…only one pizza really. But, this was a big one for me at first because I grew up on pizza. No, seriously. My dad worked in the headquarters of Papa Gino’s when I was a kid. He would bring home amazing pizza from the test kitchens every week. Yum! Not only did I love the pizza itself; but also the idea of trying something new on a medium which I already enjoyed. That’s the crux of it…trying new things…blindly…

    My Real 3:
    1.) Blind Trust (in food, restaurants, chefs, bakers, labels, etc.)
    2.) A body that didn’t fluctuate in weight and composition all the time. (I gained weight after removing gluten and became very sensitive after it was gone with lovely things like odd inflammation, bloating, and skin conditions.)
    3.) Not having to explain my health situation (Particularly, every single time I need to eat something that I haven’t prepared myself. I’m a big fan of nunya but it could make me sick for 5 days.)

    Reply
    1. 48.1

      Jen

      I can completely relate to all yours, but specifically #2. I can’t figure this out. I’ve cut out so much in terms of soy, legumes, dairy, sugar, corn, and am limiting myself on potatoes and rice. The scale just creeps up! Ugh! And the inflammation, oh the inflammation!

      Reply
  49. 49

    Jen

    1) Beer is definitely at the top of my list. Beer tasting is what my boyfriend and I did together. We would jump in the car and find a bar and/or microbrew and taste what they had. It is also something my family is big on, craft beer and discussing beers, etc. I miss the entire culture. I now turn to wine, but it is limited on who else joins me.

    2) Bread/dough. Gluten definitely provided heavenly baked goods and growing up in Germany where Brotchen is the best thing in the world, it kills me that I will never be able to enjoy a great rye sandwich or farmer’s bread, and especially sourdough anything! And pizza is definitely part of that category.

    3) Not being the socially awkward one. I hate that at every gathering, every restaurant pick, every family event; I have to be accommodated, I have to prep, I have to say no thank you even after they worked hard, I have to ask a lot of questions, I have to defend myself (to family), I have to discuss the same topic over-and-over, I have to gently remind, I have to remove myself (annual cookie baking day), I have to try to make others around me comfortable to not feel like a burden, I have to have my own scrubbing utensils at work to wash my dishes, etc.

    Reply
  50. 50

    JD Gray

    1. McDonalds fries. Not good for you but who cares.

    2. Spending $2.00 for a loaf of bread instead of $6.00.

    3. Going to cookouts and eating what everyone else eats!

    Reply
  51. 51

    KatMoss

    For those times when I go back home to Michigan (like next Weds): Pizza Sam’s pizza, double crust/double cheese with extra ham, a side of fries and their homemade bleu cheese dressing all creamy and full of cheesy crumbles. Yum. There is no gf pizza that comes anywhere close to Sam’s pizza.

    My mom’s REAL Dutch apple pie. Sweet lady keeps trying to perfect the GF crust, but it’s just not the same. And grandma’s recipe for cinnamon rolls.

    Croissants & crescent rolls. Even the Pillsbury ones from a can…

    Reply
    1. 51.1

      Alysa

      Crescent rolls…..Ok, my list is getting longer.

      Reply
  52. 52

    Jay

    GUINNESS (boy do I miss Guinness)
    Philly Soft Pretzels – I used to buy them from the pretzel store straight out of the oven and put hot mustard on them
    Donuts

    I also hate the hour it takes to find a restaurant with decent choices, but that pales in comparison to the Guinness.

    Reply
  53. 53

    Alysa

    Spontaneity, BEER, and the ability to eat at any hole-in-the-wall and try anything off the menu when I travel. That is definitely the thing I miss most.

    Reply
  54. 54

    Melissa Girmscheid

    Yes to eating out anywhere I please. I would add that I miss not worrying about getting sick. And beer. I miss truly good beer. Our gf options are limited in Arizona.

    Reply
  55. 55

    LighthouseCeliac

    I think you nailed it with your 3. So if I had to add to that it would just be the freedom that those things seemed to give without even a simple thought that I should be concerned. I miss being ignorant about my health. Thinking that health was as easy as eating how the food pyramid says and working out regularly. I am really healthy now more so then ever but the idea that any little thing could change that in an instant can be tough. This disease is not about food and treatment it is about finding coping skills that we never imagined. Changing anything for a lifetime can be hard on the brain!!

    Reply
  56. 56

    Kate

    1) Just ordering at a restaurant. No questions, no reading into menus or asking to speak to managers or chefs and no answering the ubiquitous “Can you eat here?” from family and friends. I miss just sitting down, looking at the menu and telling the waiter: “I’ll have the…”
    2) Donuts. Dough-nuts. Doughnuts. Faustnauts. Whatever you call them. Those soft pillows of fried dough covered in SUGAR. Dear God there is nothing Gluten Free that comes close.
    3) A pint of Guinness (sigh)

    Reply
    1. 56.1

      Glorya

      oooh yes! donuts! i forgot… oo man being able to get a coffee and donut at a dunks…completely miss that

      Reply
  57. 57

    Glorya

    1) going out for Chinese food at the nurmerous places around my apartment and not giving a care what i can eat
    2) thick soft crusted pizza oooo yea!
    3) not having to always think about what i am eating, what i will be eating for the day and when, keeping snacks handy because during baseball season i can’t just eat at the shack during a double header

    Reply
  58. 58

    Kit

    Pot lucks/dinner at friends, croissants and the oft mentioned spontaneity!

    Reply
  59. 59

    operagirl

    My mom’s spaghetti and meatballs, spontaneity, and eating anything I please at parties. (What I don’t miss – feeling rotten and not knowing why!)

    Reply
  60. 60

    AnnaM

    I certainly miss the things mentioned by Dude. In addition, I miss (1) playing with Play-Doh with my nieces, (2) not having to hold my breath while grocery shopping (the gf section is located directly next to the wheat flour in some of my local grocery stores), and (3) not checking a suitcase full of safe foods when traveling abroad (although it does make traveling home with new belongings easier!) I’m going to add a fourth item to my list – I miss listening to the radio while I’m driving without feeling the need to scream when a commercial describes in excruciating detail how delicious a new fast food product is. I was diagnosed in Jan of 2015 and still get some rage when I hear about new foods I will never be able to taste.

    Reply
  61. 61

    Tara

    I miss feeling safe with food… in every way. Going out to a restaurant, parties, eating at friends places, letting family cook for me… now I’m too worried about cross contamination, and what ingredients they use.

    Best example, my grandmother’s 80th recently. Stayed at a hotel, spoke to the manager about dietary requirements for myself, my sister (gluten, dairy, coconut & gestational diabetes), and my 2 cousins (gluten, diabetic), and was assured ever thing would be fine (his wife is dairy, soy, & sugar). A minute after eating didn’t feel so well & spent the rest of the party in the bathroom :( what a way to end a great party catching up with family.

    Reply
  62. 62

    Rochelle

    1. I miss deep dish pizza.
    2. I miss going out to eat and not worrying about getting sick
    3. I love camping and we road trip alot and somehow my food always gets cross contaminated or ruined by something so I miss going places like camping and not starving to death.

    Reply
  63. 63

    JB

    1. I miss my freedom. There is NO real freedom with celiac. You are a prisoner with this dreaded disease; taking chances at friends and family’s houses–parties…knowing full well, I’ll get cross contaminated– no doubt — if I try their “gluten-free” food.
    2. I miss taking all that glutenous food, whatever I wanted, for granted. I want to take it for granted. Those days are done, as well as OTC meds for colds, etc. Gluten filled. I could go on and on and on.
    3. I miss the old me, fun-loving, spontaneous.

    Reply
  64. 64

    Wendy T.

    1) I miss other people making the decisions on where we can go out to eat.
    2) I miss traveling without making special arrangements/packing food
    3) I miss office event meals where I don’t have to bring my own lunch while everyone else eats a free gourmet lunch. (…and yes, allowing me to bring my own food and/or leave site is considered “reasonable accommodation” according to ADA. They don’t have to provide me with a meal. )

    Reply
  65. 65

    Shauna

    1. Chinese food. 2. Eating out without thinking. 3. Shopping without having to pack a snack.

    Reply
  66. 66

    Lyn

    I try to always be positive but there are things I silently keep to myself–but since you asked…
    1) Always having to explain myself when not eating at home and feeling like people just really don’t want to hear it.
    2) Not being able to eat what everyone else is eating and feeling like I stick out like a sore thumb.
    3) Not being able to travel without always worrying about what I’m going to eat and if I’m traveling overseas, it’s 10 times worse.
    And since you asked…
    4) Feeling like my family, who really do try to be supportive, are REALLY tired of having to revolve around me at restaurants and family gatherings. (Probably more exaggerated in my own mind than it really is but it still makes me feel bad.)

    Reply
  67. 67

    Sarah

    No celiac diagnosis but believe I have a wheat allergy at least.

    1. Krispy Kreme doughnuts.
    2. Bakery sheet cake with buttercream icing, especially the corner pieces.
    3. Being able to eat freely and try new things without having to worry about ingredients, preparation, handling, etc.

    Reply
  68. 68

    Anna

    This summer marks 15 years of living gluten free, and I’ve now spent more than half my life gluten free! I truly would never trade my health to eat gluten again, but I do miss:
    (1) Blending in – Although I try to be subtle about my diet, I hate having to speak up when I’m out and always having to explain myself and life with celiac disease.
    (2) Traveling – I’ve always had extreme wanderlust, and celiac disease hasn’t held me back from traveling. However, meals are an important part of experiencing other cultures, and I wish I could more easily partake in that aspect of travel.
    (3) Simplicity – I miss the ease of Friday night pizza delivery, not having to research every new restaurant or new product I try, and not having to pack a handful of snacks before I leave the house “just in case” I can’t find anything GF while I’m out.
    (4) I know you only asked for 3, but I also miss soft pretzels and little Debbie oatmeal cream pies (yes, total junk food!).

    Reply
  69. 69

    Sybil Nassau

    In my family of 3 daughters, I am gluten sensitive, one daughter and her husband are vegans, another has a shellfish allergy, a third has issues from by-pass surgery, and my granddaughter is highly sensitive to corn. We manage to accommodate everyone very nicely at a local restaurant that caters to allergen-friendly-, vegan and vegetarian tastes with only fresh ingredients, free range chickens, organic eggs, grass fed beef, wild caught fish etc, and everyone leaves happy and well fed for breakfast, lunch or dinner. We pay a little more, but it is so worth it -doesn’t pay to cook at home. Dedicated fryers too. There is also one local burger place we also enjoy.. Yes, we are fortunate!

    Reply
  70. 70

    Lisa

    Congrats Dude! Your stick-to-it-iveness is impressive! Thanks for doing what you do.

    What do I miss?
    I miss being bowel-secure – as in not having to worry if I get minutely glutened, something embarassing would happen a few hours later; as it unfortunately has.
    I wish I was not a pain in the rear regarding food and restaurant choices to those I live with, love, or work with – though I’m fortunate that they’re all supportive or at least neutral.
    And… obviously, I miss gluten food. Most recently… I miss dark, crusty rye bread.

    Reply
  71. 71

    Julie

    Naan bread, rainbow rolls, and thick crust pizza!

    Reply
  72. 72

    Sue

    I miss the spontaneity, as you said, the mouthfuls of eating from bagels and donuts, and the free time I used to have before I started making all my own food. But the one plus? Being healthier!

    Reply
  73. 73

    Sandi

    After 20+ years of living gluten-free, I honestly do not recall what most “normal” food tasted like, so it is definitely not the flavour of food that I miss. I make a really good pizza, (biased!) so I also don’t miss that. Seems that we feel pretty much the same way that you do, Dude –
    1. Convenience
    2. Having to refuse anyone who offers me something new to try, since I don’t want to have to interrogate them about the ingredients – knowing that 9/10 I will not be able to eat it anyway.
    3. Having to ALWAYS check ahead with hotels, restaurants, airlines, etc to ensure that they offer gluten-free options.

    Reply
  74. 74

    Tuesday

    I miss bot being the odd one out everywhere I go, I miss not having people get mad at me because I got sick because they were not careful enough, and I miss not being a nuisance everywhere I go.

    Reply
  75. 75

    Tiera

    I’m not the one that’s gluten free at my house, it’s our 9 year old but I think I can answer for him….

    He misses pizza (someone really needs to come up with a good gf pizza!)

    He misses being able to go and get ice cream with his sister or friends

    He misses being “normal” and able to just do what everyone else can do. He eats separately from everyone at school because he kept getting sick. Thankfully there is a girl in his class that eats gluten free (not Celiac but it makes her pretty sick) that is one of his best friends and they eat together in the teacher’s dining area now.

    We all went pretty much gluten free at home (though we do have hamburger/hot dog buns on occasion when we do cookouts but they’re kept in the garage!) and the thing I miss the most….flour tortillas! I still haven’t found anything quite like a good flour tortilla.

    Reply
  76. 76

    Britt

    I was diagnosed last October. I miss not having to check everything. And REAL pizza. And Norwegian milk chocolate. Norwegian shops and restaurants have a long way to go when it comes to gluten free options. I’m wondering how staying in the US this summer will be for me. I hope you guys have more options than here.

    Reply
    1. 76.1

      Heather

      Depends a lot on where you are going! Some areas are amazing and some, not so much.

      Reply
  77. 77

    GFMama

    I miss lots of things now that I’m a Celiac (almost 15yrs) but I resent even more. I resent that family can’t seem to be bothered to make or buy something that’s GF but they go on and on about how they love making special treats for the other grandkids (non-Celiac). The family events that I don’t want to attend because it’s just too hard when it’s all about food.
    I resent seeing my kids sad faces as they realize just how easy regular kids have it. How non-Celiac families can buy anything in a grocery store just because it catches their eye.
    Most of all I resent that I feel left out or limited in jobs because of the travel and food events. I’m tired of having to explain my medical hell to everyone and then listening to their snide comments.
    Because I can’t leave this in a down tone…I’m constantly amazed at the things that make our life unique. When we travel it’s all about the cool treats found at the destination grocery stores and the restaurants that are accommodating and helpful. We do more physical activities as a family then many others. That makes us closer and stronger as a family and for that I am very grateful!

    Reply
  78. 78

    Bubba26

    1. Croissant
    2. Boston Cream donuts
    3. Pizza

    This is a bit weird but I actually have dreams about eating croissants. After eating one I either wake up in a panic thinking “What have I done!!!” or I wake up really excited thinking thinking “I’m cured!!!” and then reality slowly sets in as my brain starts to wake up a bit more and I realize it was just dream. I have a pretty good sense of humour so I’m able to laugh about it but in a way it’s kinda sad that this is my life.

    Reply
  79. 79

    Cookie's Mom

    Not being pissed off every time some ignorant fearful person with a keyboard takes to the internet to bully a person who can’t consume gluten.

    Not feeling like I’ve been punched in the stomach every time my son misses out on something because of his diagnosis, or because he is made fun of for something that is utterly beyond his control.

    Going wherever I want whenever I want with my child if I want, and eating whatever is put in front of the two of us, without thinking about whether or not it will kill us.

    Reply
  80. 80

    Anne

    1. Freedom
    2. Choice
    3. Spontaneity

    Reply
  81. 81

    Joan Masters

    1. Zingerman’s bread, especially the Jewish rye for Rubens. Three Bakers has a decent rye style (ryeless rye as I like to call it), but it isn’t Zingermans.
    2. Having to look closely at every pan I use in the kitchen for nicks and crud that could be gluten, and not being able to use my wooden spoons and cutting boards.
    3. Finding something at the store that is probably GF but you just aren’t sure about it, so you put it back.

    Reply
    1. 81.1

      Sybil Nassau

      Check freezer cases for something called BFree breads, made in Ireland and imported. The Deli bread is as close to Jewish rye as anything I have found. An entire loaf, thinly sliced, comes in each package for approx $5. The bread is round, the slices oval in shape with slightly sour taste, smell and texture of rye bread. It does contain psyllium but no dairy and keeps well in freezer- they also make a white sandwich bread. WOODEN BOARDS AND SPOONS: if you like using those that much, buy new ones- or get bamboo if you can find it- better than wood any day. PRODUCTS: there is an 800 number on al packages- use it – when in doubt, CALL!

      Reply
      1. 81.1.1

        Joan Masters

        I appreciate your helpfulness, but I think you are missing the intent of the post, which is to complain and say what we miss. Not to fix problems. I miss these things, end of story.

        1. You clearly have never had a Ruben on Zingerman’s Jewish rye! Three Bakers makes a substitute, as I stated, but it is not Zingerman’s.
        2. I said I missed my cutting boards, such as the sandwich board my dad made for me, the beveled breadboard my husband made in 7th grade, the wonderful walnut cheese board made locally, I won’t even get into the spoons. I know I can get new ones, but they aren’t mine. And I live in a shared kitchen and won’t trust that someone won’t gluten them.
        3. I know I can call and do, but calling when you are trying to get supplies and be on your way isn’t an answer. Remember, we are stating what we miss, not how to do work arounds.

        Reply
        1. 81.1.1.1

          Sybil Nassau

          Zingerman’s rye must be really special as we do no have it CT to my knowledge and the one I mentioned- BFree comes as close to a Jewish rye as anything I have had, including 3 Bakers. You mentioned cutting boards ad wooden spoons- not treasured heirlooms you refer to now. I am wondering if there is any way to make those safe- spraying with a bleach solution maybe? And I do miss the same things everyone else does: pizza, spontaneity, going out with friends and not wondering about the food- the isolation gets to me.

          Reply
  82. 82

    Jeanne

    1. Spontaneity and ability to just easily eat with friends; difficulty during travel, as I love to travel but now need to be able to explain everything to all the wonderful people who want to feed or eat with me.
    2. Cheese, as, like many of us, this d**n disease also made me terribly lactose intolerant.
    3. Eating special food made by loved ones. (birthday cakes and Christmas cookies being the hardest)

    Thanks for asking!

    Reply
    1. 82.1

      Sybil Nassau

      HEY EVERYONE– HARD CHEESES WITH A HIGH FAT CONTENT DO NOT CONTAIN LACTOSE! Cabot(brand) cheddar cheeses are all lactose free- check the labels. Keep in mind the higher the fat content the less lactose– so real whipped cream, high fat ice cream, butter, are usually ok for most individuals with lactose problems. Sorry if no one has told you this before–and for many people, once the villi have healed, they can again enjoy regular dairy products.

      Reply
    2. 82.2

      Sybil Nassau

      HEY EVERYONE– HARD CHEESES WITH A HIGH FAT CONTENT DO NOT CONTAIN LACTOSE! Cabot(brand) cheddar cheeses are all lactose free- check the labels. Keep in mind the higher the fat content the less lactose– so real whipped cream, high fat ice cream, butter, are usually ok for most individuals with lactose problems. Sorry if no one has told you this before–and for many people, once the villi have healed, they can again enjoy regular dairy products. Some Chinese restaurants will, upon request, prepare a gf meal with no soy, no allergens(I personally know of 2 in our area), speak to the owner or manager. For pizza, Freschetta frozen gf pizza is not bad at all- and very good with our own added toppings. Or learn to make your own.

      Reply
    3. 82.3

      Brian

      I completely agree with #1 – ditto here. I went on a cruise last month. You could imagine how painful that was. It was a minefield, but … I got through it. They really don’t understand gluten-free preparation for people with celiac disease. In fact, the looks I get when I mention celiac diseases are entertaining. You’d think I just told them I dropped in from Mars.

      Reply
      1. 82.3.1

        Sybil Nassau

        There are several cruise lines that do offer excellent gf menus– you need to do your homework and research- Viking River Cruises, Norwegian and Princess are 3- I have heard from very sensitive celiacs who managed beautifully and were not charged extra for superb food. (I have not gone myself but many others have.

        Reply
  83. 83

    Greg

    Yes, freedom to stop anywhere and pick up something to eat instead of having to cook AGAIN. Like my old regular chinese take-out. I make a great pizza and brew my own beer so I have those but can’t GO OUT to have them. Sigh

    Reply
  84. 84

    Brian

    My top 3 in order – 1) Beer, 2) Beer, and 3) wait for it . . . BEER !! Damn, I miss a good beer. When I was first diagnosed 3 years ago, and I saw the list of things I couldn’t eat (or drink) anymore, beer was the tough one for me. Followed by any gluteny-rich dessert. I’m not particluarly a foodie, per se – so, Beer was the big one. The GF beers don’t even come close. Any of them.

    Reply
  85. 85

    Deb

    I miss not worrying, I miss not planning everything, I miss not being able to enjoy meals with friends and family without a thought about what could be lurking in the food. I miss that feeling of home being a sanctuary. My husband of 32 years refuses to eat gluten free and, sorry to say, unless I get divorced, I risk cross contamination every day. I don’t miss foods or drinks. I miss my ability to live free of conscious thought about what I am going to freaking eat.

    Reply
  86. 86

    Sasha

    First, I have to thank Gluten Dude for all that he does for this community! You have been so helpful to me over the last few months.

    Before I was diagnosed I had gluten at virtually every meal. It was a steep learning curve!

    There are many things I miss. I really miss not being able to eat out normally. I miss real bread, French, Italian, all of it! Also pizza! Other things include: not feeling awkward whenever eating at someone else’s house, cookie dough ice cream, occasionally Chinese takeout and having conversations with people about food.

    That being said, I am so thankful I don’t feel awful every single day. I am a more empathetic person towards medical conditions now! I will never take my health for granted again :)

    Reply
  87. 87

    Sasha

    First, I have to thank Gluten Dude for all that he does for this community! You have been so helpful to me over the last few months.

    Before I was diagnosed I had gluten at virtually every meal. It was a steep learning curve!

    Top 3:
    There are many things I miss. I really miss not being able to eat out normally. I miss real bread, French, Italian, all of it! Also pizza!

    Rest:
    Other things include: not feeling awkward whenever eating at someone else’s house, cookie dough ice cream, occasionally Chinese takeout and having conversations with people about food.

    That being said, I am so thankful I don’t feel awful every single day. I am a more empathetic person towards medical conditions now! I will never take my health for granted again :)

    Reply
  88. 88

    Christine

    1) Not having to constantly explain this disease – I have to go to a wedding and I’m so nervous that everyone will ask me why I’m not eating! And people ask me even if they’ve seen me not eat before – as if something has changed! 2) Spontaneous eating – being agreeable to other people’s choices and not having to google the place on my way there to make sure there’s something I can eat 3) Bagels, those are my recent thought lately.

    Reply
    1. 88.1

      Sybil Nassau

      I am, in fact, going to a wedding this coming Sunday and a simple call to the caterer (and a request to the bride/groom on my acceptance), revealed a gf meal will be available for me. There will also be plenty to choose from at the cocktail party beforehand so much so I will probably take my meal to go. (I was told the meal was filet mignon, that served “naked” is no problem.) The clue is to ask questions and be prepared- when in doubt bring protein bars with you and/or eat a salad with protein beforehand. Do NOT expect a meal you can eat without checking first, and most caterers today are ready and willing to provide alternatives with so many food allergies if notified in advance. Very few gf bakeries are willing to go to the time and trouble to create a proper gf bagel (boiling, steaming, baking). One place is Jennifer’s Way in Manhattan- although not sure if she (Jennifer Esposito) is shipping again. A second place, Still Delicious, in southern CT is not YET shipping but the bagels are fantastic and very close to the real thing. There are probably others scattered through out the country.

      Reply
      1. 88.1.1

        Sybil Nassau

        As things turned out, I was provided with a simple piece of grilled fish that was delicious. (the fish was being cooked first and the filets would take too long), no veggies, no salad, no fork! I was very grateful to be supplied with something and heading home at 9 pm on a Sunday evening with a fish dinner in my lap was certainly better than nothing. The staff told me the Brooklyn Botanical Gardens now prepares all catered meals gluten-free as it is much easier for everyone and no one knows the difference. ??? That did not apply to most of the hors d’oeuvres, the rolls or the dessert! so… huh?

        Reply
  89. 89

    Dick L.

    >>…1) spontaneity, 2) real pizza and 3) eating out anywhere I damn please<<

    That pretty well sums it up for me, too. I'd probably put eating out without regard to how "safe" the food and drink would be for me first. Real pizza (and good yeast breads in general) would be the other candidate for what I miss most. Spontaneity probably covers the rest, although for me I might emphasize not having my condition affect my interactions with others. (Who wants to be "different"? I'd really hate to be a teen or college student with celiac.)

    I'm in the process of addressing the pizza and bread problem, which is a work in progress with some (or maybe quite a bit of) progress yet to be made. But I've got pizza crust, pita, and bread that keeps me satisfied, even though it's not as good as what I was making or buying pre-diagnosis. I miss not having to eat second-class stuff. (And most commercial gluten free pizza I've had isn't even close to second class.)

    The eating out problem is a major one for me. I'm sort of a foodie, and like a wide variety of things, including Chinese, Thai, all sorts of Indian, French, Italian, Greek, Turkish, and on and on. And my wife and I like to travel on relatively (or very) small vessels on the water, and it's always a crap shoot as to whether the galley can handle GF as well as their sales people claim they can. But I've been on five cruises since I had to go GF, and not one has glutened me. I think.

    The most recent one was a Mississippi river cruise on the American Queen (NOLA to Memphis), and I've been sick for the past week since getting back. I think it's a cold, but it may have been aggravated by some cross contamination. Staff in the dining room were good about telling me what was safe, even to point of going back to kitchen to verify things with the chef. (Who ever heard of baked beans that had flour in them?) At one buffet, I checked on the shrimp and grits, and was initially told they were okay. But one of the staff went to the kitchen to check and found out they had gluten in them. (They recovered reasonably well– they came out in a while with a plate of shrimp on rice. That was a nice touch, but it shouldn't have been necessary.)

    I've had good food and service on the Wind Star lines "Wind Surf" and on an Irish barge, the Shannon Princess. (Really good food on the latter!)

    Reply
  90. 90

    Khugs

    Cookouts hosted by other people…where I can nosh at will. Two cookouts in three days reminded me how difficult they are now… :(

    Reply
    1. 90.1

      Sybil Nassau

      Offer to bring a dish or two you CAN eat and serve yourself first! Works every time. Ask politely what is being served. Bring your own hamburger or hot dog roll and ask that your burger be cooked on piece of foil (poke holes in it)- IF you know the hostess well enough to inquire, that is. If it’s a stranger? Eat first then go and offer to bring a salad or a dessert.

      Reply
  91. 91

    Alyssa

    I’m with you on the spontaneity! Number two: Not just REAL pizza, but late night drunchies pizza. Making yourself a midnight tipsy snack just isn’t the same as ordering a damn pizza.

    Number three is a toss-up between churros and Thin Mints.

    Never mind. Going with my gut here (pun intended) … Number three is definitely churros.

    Reply
  92. 92

    Gina

    I miss being able to go out and try new foods/restaurants with my husband, and even getting ice cream with my kids. I also miss not having to be anxious about food, and just enjoying it.

    Reply
  93. 93

    Betsy

    I miss eating out with my hubby without getting anxious.
    I do miss french bread
    I miss not having to worry about having a bathroom nearby every where we go-just in case!!

    Reply
  94. 94

    Amanda

    I was a major junk food junkie and consumed copious amounts of all things gluten for my whole life until I received my diagnosis (at age 30, 2 1/2 years ago). Sometimes I miss those things, but that pales in comparison to how I miss feeling free and safe in the world. I just read your post on not feeling afraid, but I’m not sure how to accomplish that…. I have 3 small children, and although we operate a gluten-free household, they consume gluten while out and about, in restaurants, school, church snacks, grandparents, etc. And I feel like it always finds its way to me. Despite obsessive and unending diligence, I have been ‘glutened’ approximately once per week for the past 3-4 months. I’m in despair over it and am living a life totally in fear. If only this diagnosis meant that I could give up a food group and that would be the end of the problem. Like giving up alcohol, or tobacco, or sugar. But giving up the offending protein is only step one of the battle. It seems to me that a life of fear (and failure) is going to be a lifelong sentence :( And the loss of freedom and safety is what I miss far more than I could ever miss any food. Even donuts. Mmmm.

    Reply
    1. 94.1

      LighthouseCeliac

      Well written and stated. This is how most of us feel most of the time. Everyone told me that it does get better, I tried to believe them even in the darkest times. I still am not sure if it does but one thing I do know, we get better at dealing with it. King man Probiotics and Leader brand anti-D over the counter, they are my constant companions. Jennifer’s Way bakery, Nuts.com gluten free products, Against the Grain pizza and Pita bread, StevesPaleoGoods, Applegate, Organic Valley, Goop products, Lundberg rice, Ancient Grains, Paleo Bread, Almond Breeze milk, Paleo Cereals, Coconut Secrets everything, Numi teas, Once Upon A Time Peanut Butter, Acure Products, Mary’s Gluten Free chicken,AND GROUNDBREAKER BEER!!! Drink some of that beer and things seem better somehow!!Thanks Gluten Dude for suggesting the beer!!! Wash your hands often with gf soap. Wash door handles and bathrooms down with rubbing alcohol often. It’s all in how we cope with it. We have a stinky disease but you will get better and get better at it. Never beat yourself up if you feel bad. Just write your thoughts here and we will all understand and help with whatever we have to share!! Hang in there!!

      Reply
      1. 94.1.1

        Sybil Nassau

        I have to add something really simple: wash your hands often- not to the point of being OCD, but frequently, especially upon arriving home or before eating. Try to stay with certified gluten-free products. When dining out, ask the right questions in a quiet, polite tone of voice without sounding shrill or making demands- it is even better if you can talk to a manager first before sitting down at a table. Try to go a little earlier for the best service. Please don’t live in fear, do the best you can. stay positive, don’t whine about what you can’t have – — be grateful for what you CAN have- which is a heck of a lot more than we had 10 years ago!

        Reply
  95. 95

    LighthouseCeliac

    Oh and I read that 10-15% of us can’t handle oats,even gf ones. I am definitely one of those, I was shocked that so many are too. That is why I love Paleo products so I don’t have to worry about that. I do fine with corn on the cob but not corn products. I eat very few grains, but I do try every once in awhile to fit some back in, but never oats, I totally gave that up!! We all are so different because of the level of healing (or lack of) that we are experiencing.

    Reply
  96. 96

    LighthouseCeliac

    Also Jane Anderson writes very useful information for us on very well.com

    Reply
  97. 97

    Alittleupsetbutihavericecakes

    Chicken and Dumplings from Cracker Barrel, Corn Dogs, and fried anything.

    Reply

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