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37 Comments

  1. 1

    Kathy W.

    It’s not a joke. It’s our life. And, I can count on one hand the number of times a server actually got it and told me I’d be ok, and I believed them.

    Reply
  2. 2

    Jennifer

    So well said!!! I may have to keep a copy with me and leave it as a “tip” if ever needed (hoping I will not). Thanks for sharing.

    Reply
  3. 3

    Rose

    As a fellow celiac I can relate to this.

    I’m a bartender. Besides making drinks, I serve food to guests seated at the bar and also pick up tables in the nearby seating area as I’m able. I get excited when someone comes in with (a) dietary restriction(s), whether it’s celiac disease, an allergy or some specialized diet. I know I’m that rare server who’s actually knowledgable and dedicated to getting their food right.

    Servers like the one that letter was written to have no business working in the food service industry. They’re miserable to have as a server and miserable for other servers to work with, because of their constant complaining and reluctance to work. It’s literally their job to advise customers about the menu and communicate their desires and needs to the kitchen. Besides the ethical aspect, I don’t know why anyone would take a job doing this for tips and then mock the people who determine their income.

    I feel that there should be mandatory training for food service professionals on food allergies and dietary restrictions, for safety’s sake, but for some reason there’s not.

    Reply
    1. 3.1

      Jess

      Best. Comment. Ever! Maybe you should teach classes online for a serving certificate. It could change everything…

      Reply
      1. 3.1.1

        Rose

        That would be awesome! I also work in the medical field (EMT) so I have some formal training regarding food allergies. I would love if other food service workers were interested in letting me share some knowledge for the safety of our guests.

        Reply
    2. 3.2

      Cindy

      Where do you work? I’ll be there.

      Reply
    3. 3.3

      Victoria

      Beautiful.

      Reply
  4. 4

    Thankful for Whole Foods

    Wow! That is an amazing piece of writing. I would like to say thank you to the author. It helps so much to know that I am not alone in feeling fear, isolation, grief, and disappointment because of celiac. Thank you Dude for posting that.

    Reply
  5. 5

    Paula-momof8

    UGH..I could cry reading this. These are worst things about having celiacs- is the fear we live with daily, and the isolation. We should not be mocked for something we did not choose and have no control over. Would someone mock a diabetic or a child with a peanut allergy? This needs no other response because we ALL have felt this way at one time or another. It is not a joke ..it is our life! I am currently recovering from being glutened by our local Mcdonald’s. I foolishly stopped in to grab a quick dinner on the go. I wasn’t going to be home for a long while. I am a busy Mom with 8 kids. I had not had the opportunity to eat all day long. Thinking, since I had been able to get a burger no bun from other locations and be safe before that it would be that way this time with this location. I was wrong. It has been two weeks and I am still suffering from it. It is obvious to me that someone simply grabbed an already made burger and discarded the bun before they gave it to me. The last time I ate out prior to this was months ago when my husband and I had spent a wonderful week alone together for our anniversary. I didn’t get sick the whole week BECAUSE we rented a condo that had a full kitchen and we prepared all of our own meals. It was the most relaxing vacation I have had since I found out I have celiac disease 5 years ago. However, on the morning we were leaving to come back, home my luck had run out. We were up bright and early, packed up and on the road before we had a chance to make breakfast. 2 hours in to our 5 our drive, we decided to stop at Denny’s for breakfast. I carefully explained to the waitress my needs. She acted like she understood. She even talked to the cook and the manager and came back to tell me that all is well with my order. Not only did it take forever to get my food, but I had to send it back because they fried my potatoes in the deep fryer. Which they promised they would not do but make them on the griddle for me instead.When I got my ‘new plate of food’ another 30 minutes later. I ate about half and started feeling extremely ill. I could tell I had been hit by gluten and had to rush out of the restaurant leaving my husband alone at the table . We still had a 3 hour drive ahead of us. All I could think about was “Oh God please just let me get home before I start throwing up..Please don’t let me start throwing up in the car!!” I came home from a week away where I should’ve been rested and refreshed ..Instead I spent the next week being sick and trying to recover. I am almost to the point that I feel it is no longer worth it to eat out again..EVER. If that means going without food even if my husband is eating out.. I’d rather not eat at all and just watch him eat than to risk getting sick. Or perhaps stopping at a grocery store first to get my own food. I’d prefer that. I don’t like it but I think it is just the way it has to be for me. Which will further isolate me and make my husband feel like he can’t ever go out with his wife..but oh well what can I do. I can’t keep being so sick that I am out of commission for weeks on end or barely functioning because of one meal eaten out. it is not worth the risk to me anymore.

    Reply
    1. 5.1

      Jess

      Do you and your husband like Thai food? They use rice noodles and pretty much anything except the fryer is gluten free. Try the Pad Thai. Yum! My husband and I only eat out at a few places that we know are safe. I hope you both find some good places aND are able to still have dining dates. :)

      Reply
      1. 5.1.1

        Paula-momof8

        I have never had Thai. Don’t they use soy sauce in Thai food? Soy sauce usually has wheat in it.

        Reply
        1. 5.1.1.1

          Dick L.

          Thai is usually safe. But there are a few things with a Chinese background that do use soy and should be avoided unless the place actually knows about– and has– gluten free soy sauce. There are also a couple of dishes that use oyster sauce, which can be but usually isn’t gluten free, that can be a problem. (If you can find it, Lee Kum Kee Panda Brand Green Label “Oyster Flavored Sauce” is gluten free, and has no MSG or fat as well.) I’ve had a number of good GF Thai meals since I had to go GF, but I’ve been bitten by the oyster sauce problem, too. As usual, you have to know the potential problems and determine what is likely to be okay and what is likely to be a problem. And then determine how likely it is that the staff of the restaurant understand and will try to keep you safe.

          Fortunately many Thai places are small family-run operations and want to do right by you. Last winter in Hawaii on a winter break (I live in cold country) I found a fairly new Thai place, and checked it out before eating there. It seemed like a candidate, and since we were renting a condo and doing most of our own cooking, I had GF soy sauce, which I took along when we went to eat there. They used it and I didn’t have problems.

          Reply
          1. 5.1.1.1.1

            Robin

            Regarding Thai Food: Thai food that is made fresh is generally gluten free, but there are a lot of restaurants that use the prepared sauces instead of making their own and a lot of them are NOT safe. Be careful and ask questions! It’s the same with Indian restaurants–the fresh sauces and curries generally don’t have gluten, but the prepared ones potentially do.
            It’s hard, but I limit any restaurant activity to about once or twice a month at trusted places (and I research the heck out of them online before I go). I avoid McDonald’s and other fast food places completely–I learned the hard way. I keep a gluten free protein bar or other snacks like nuts with me as I have been stuck where there is just nothing I can eat.

            Reply
    2. 5.2

      LighthouseCeliac

      I had a bad experience at California Kitchen right after finding out about my diagnosis. I called them and wrote the GIG several times. The restaurant was very sorry but the GIG simply wanted to defend themselves and the restaurant. The owner/manager asked what they could do and I said simply tell people that their cross contamination issues might not be strict enough for gluten intolerance issues (Celiac). They do that now. I have not eaten out since, that was Thanksgiving of 2013. I travel every week some long stays and some short. We always make our food to bring. My husband has no issue with it. Our food is fabulous, I am safe and not afraid to travel now. Sure you miss it but it just goes on the list of things I miss is all. We always say “no suffering here” and it is so true. Some can eat out and others can’t, it is just different ways of coping is all.
      Find what works for you and you will feel better physically and mentally.

      Reply
  6. 6

    Ang

    I could not have said this any better… I feel like she was talking through me… finally someone said everything I think…

    Reply
  7. 7

    Lisa

    What a heartfelt and beautifully written letter voicing the exact thoughts I feel. Thank you for sharing, GD.

    Reply
  8. 8

    linsylu

    Yes! What a strong, yet graceful letter.

    Reply
  9. 9

    Jacqueline

    Well said! (and Tweeted) All food servers should be trained, but that won’t guarantee that they will actually care. I’ve stopped eating away from home. It just isn’t worth it to me.

    Reply
  10. 10

    Jeanne

    Thank you, thank you.

    Reply
  11. 11

    Laura

    Great post! There is something to be said about varying reactions to gluten poisoning. For me, within 20 minutes of ingestion, the explosive diarrhea begins. Then approximately every ten minutes thereafter the bowel continues to dump for a period of 4 and 1/2 hours during which sphincter spasms start. It is surprising how much food the colon holds at any one time and how foul undigested food smells. While placing my order, I requested that the server be certain that my no bread or roll touched my plate. Then I stated; “After all the restaurant probably won’t want to clean up after me in the event I am exposed to wheat”. The server looked at me and stated; “Don’t worry, the staff has been instructed to be very careful with allergens. I do not want you to be sick and besides the job of bathroom cleaning is on my assignment list today”.

    Reply
    1. 11.1

      Christine Heynen

      Laura,

      I echo your sentiments exactly, especially the part about the fact that the restaurant staff won’t be around to help us deal with the consequences of their mistakes. In fact, whenever I have a wait staff member make a mistake with my food, I often tell them, “you won’t be around to help me in the bathroom after I eat the food that I told you that I can’t, so let’s not even go there”. I can count on one hand the number of restaurant staff that have brushed off my specific GF requests and brought me contaminated food/wheat-based food (if my memory serves correctly, I’ve had this happen only twice–touch wood). In fact, the last time I went with my brother and my best high school friend to a restaurant, our server was AWESOME. He took my GF needs very seriously and the food was amazing (huge portions and tasted very good). I left a generous tip and because of this, I am definitely going back to that restaurant (if not for Father’s Day, I will definitely ask to go to this restaurant for my birthday).

      Reply
  12. 12

    Cheryl

    Great letter. Next time, get outta your seat, walk over to people behaving badly like this, and calmly explain this to them. Then find the manager and explain it as well. I’ve been doing this more than 20 years. I stand up and explain to people who don’t get it AND I find management and the owners. If one wants to be in the food service industry, then one must understand that ignoring, making fun, disregarding, and any other ignorance is totally unacceptable. You make money off people purchasing and eating food then you must understand that anything less than polite behavior towards people with genetic disorders is WRONG.

    Reply
  13. 13

    Dejah

    Mocking anyone for any reason just means your server was an asshole. That you got the brunt of his/her assholiness only means you were in the wrong place at the right time.

    You can get mad.
    You can get even.
    You can complain.
    You can educate.
    You can’t stop people from being assholes.

    (Invisible disability, here. Lots of experience.)

    Reply
  14. 14

    Karen

    Loved your letter. I’m going to use it to give to relatives and friends so they will understand why I don’t go out to eat and am very strict with cross contamination at home. Thank you so much for putting my feelings into words.

    Reply
  15. 15

    Hap

    Beautiful and well stated letter!!! Please continue your most graceful advocacy and uninformed people will listen and learn!

    I just returned home today from the hospital after my most recent (and hopefully last) surgery yesterday. I’m now up to gluten caused (3 types of cancer, 5 retina surgeries and yesterday the removal of a walnut sized tumor under my jaw/tongue through my neck) along with all of the other CD, DH and other abdominal issues and procedures of the last few years.

    I’m commenting today because I was so pleasantly surprised how understanding and either knowledgable or willing to listen everyone was during this hospital stay. I didn’t make it to my room until mid afternoon after not having eaten anything since the prior day and was brought a banana and tea because that was all the gluten free food available, which is what I expected. However, I was pleasantly almost shockingly surprised that Dinner was some better although only thing I could eat was fruit because I couldn’t trust the prep of the meat and vegetables but they tried very hard and at least the food was / should have been naturally GF. Breakfast this morning was completely GF and I ate all (but the Trix cereal which ingredients appeared GF but I don’t eat cereal or packaged foods).

    I do grow weary of explaining every single time I eat away from home why I’m free of gluten. Every single Hospital person (surgeon, anesthesiologist, nurses, staff – a lot of explaining) asked “how allergic” and I explained “3 types of cancer, 5 retina surgeries & this tumor I’m here to have removed along with the gland containing the tumor” so they all took my circumstances very seriously, which I appreciated greatly. I do feel for my gluten free compatriots who don’t have my history (and my Mom’s 3 separate events of Stage 4 lymphoma which was healed last time by no gluten) to help the uninformed & nonbelievers understand. We should be able to say CD or gluten intolerant and that be enough.

    The main reason I commented today when I should be sleeping is to encourage our graceful and thoughtful emailer and our own Gluten Dude that your advocacy efforts are constantly working especially in professional arenas. Our hospital cafeteria now obviously has a dietician on staff who understands the ins and outs of gluten free, which I shall publicly applaud their efforts and go by to personally thank the cafeteria mgt – when I can talk again next week. This is same hospital at which three years ago I had to convince my Mom’s oncologist to stop her chemo while we instituted a strict gf diet as a last resort to heal her Stage 4 lymphoma because the chemo was killing her & I was fairly certain after my research that doing so would heal her, which it did & she’s still alive today, like me, solely because we don’t eat gluten anymore!

    Please continue the informed advocacy my gf friends – y’all never cease to inspire me!! I’m going back to sleep now.

    Reply
    1. 15.1

      LighthouseCeliac

      Hap!! My goodness!! Get well!!! My thoughts and prayers are all yours!!!

      Reply
      1. 15.1.1

        Hap

        Thanks so much Lighthouse! I saw your reply to me, I think, a few weeks ago … Sorry I haven’t had time to reply sooner. It’s so good to hear from you and know that you’re so much better!!!

        I’m hoping that after getting this last surgery yesterday, my autoimmune system, which my Dentist nicknamed “The Beast,” will finally relax & calm down. I had a titanium post installed in my jaw in Feb and this 3″ hole in my neck by my microvascular surgeon to remove the tumor up inside my jaw yesterday all without pain meds or any antibiotics, which is partially why I recover so quickly. Everyone says “But you look so healthy!”, which is why I agree with the Dude so much that if someone wants to eat free of gluten, no one should question such food decisions. Not eating gluten obviously keeps us Celiac People healthy so it sure can’t hurt healthy people – it’s just a matter of good nutritional choices. When I can exercise again, I’ll really be healthy “lookinger”!

        Reply
        1. 15.1.1.1

          LighthouseCeliac

          You make me laugh!! You have such a positive spirit!! Thanks for showing us all that no matter what…we can still live and smile!!!

          Reply
  16. 16

    Kayla

    Amen I feel the exact same way and sometimes feel so alone in this. And this article really helped on a bad Celiac day like today so thank you from the bottom of my heart

    Reply
  17. 17

    Liat

    OMG it’s a gluten allergy, not cancer! So, you have to read a menu or packaging on food. People are allergic to heaps of things nuts, dairy, certain food colourings, sugars etc and they all have to deal with this. There are much worse things in the world. I’m sorry the waitress made fun of you or said some things she shouldn’t have. That wasn’t the right thing to do, but this letter is just a little extreme.

    Reply
    1. 17.1

      Gluten Dude

      OMG..celiac is not a gluten allergy so you have no idea what you’re talking about.

      Reply
    2. 17.2

      Dick L.

      // So, you have to read a menu or packaging on food.//

      Reading a menu may or may not be useful. It depends on whether a place is catering to the “gluten free because I think it’s healthy” or the “gluten free because I get sick if I consume any gluten” diner. Sometimes the menu is clear on that, more often it’s not. Yes, it’s not cancer. And I’m grateful for that. But _I_ would like to know if the food I’m ordering is celiac-safe or not. Others would like to know if it’s safe for people who react to the slightest trace of gluten, even though they have not been diagnosed with celiac disease. Sorry, but it’s not as simple as just “reading the menu”.

      Some people with serious gluten problems may tell a server that they are “allergic” to gluten, because people in general often understand that allergies (like peanut allergy) can be serious. And some people who have problems with gluten may actually have an allergy to it. For those of us with celiac disease, it’s not an allergy, but rather an autoimmune disorder which is triggered by gluten. In my case, an occasional dose of gluten won’t require an epipen, but will just make me sick for two or three days. Others may get very sick for a week or even several weeks and may have problems that hang on for months. The reaction of people with celiac disease to gluten is pretty variable. But it’s NOT an allergy.

      I’m not trying to demean those who eat “gluten free because [they] think it’s healthy”. There’s reason to believe that gluten is not healthy for many or most people. But there are others of us for whom it’s avoid gluten or get sick. (How sick depends on the person– I’m “lucky”, it only causes me problems for a few days.)

      Reply
    3. 17.3

      Hap

      Yes Liat, unfortunately, it can be cancer and I just got my 3rd scar (this time a pretty 3″ one in my neck with a tube drain and a hole in my ear drum) last week to prove it. For us affected souls, gluten equals auto immune induced inflammation and that inflammation can turn right on into cancer. I avoid gluten like the plague but it’s taken 3.5 years for me to recover from prior damage before I knew and ongoing damage while I ferreted out all of the various sources of gluten in my food and meds. I think now after 6 years since my first cancer scar and 3 1/2 years of understanding how gluten is the culprit, I may finally have had my last tumor removed. It’s amazing how much my auto immune system called down within 24 hrs after this last surgery and now 10 days later how much better I feel – I can hope at the very least.

      Regardless of ignorant people like the waitress and Liat and their uninformed comments, please stay diligent if you need to refrain from ingesting gluten (Celiac or just intolerant), your health may improve as a result. Now after 9 Drs and surgeons, 2 nurse practitioners and 6 years of Med bills, I sure wish I had known gluten was the culprit years ago…

      Reply
  18. 18

    Tammy R

    I am recently diagnosed Celiac, still learning all that is good and bad for me. It has been very confusing. I did find a few things I recognized to prepare dinner and it taste just fine. Then I see articles that I may be harming my family cooking GF. So does this mean I will never have a meal with my family? Are there levels to how intolerant my body is. Do all doctors give the diagnosis so vaguely?

    Reply
  19. 19

    Kye

    This is just intolerance which is a common practice for humans. It’s a deeper issue than our disease and should be treated as an attack against logical, decent people rather than just you personally. When thought of on that scale, I find comments against celiac disease easier to handle on a personal level.

    Reply
  20. 20

    K

    Thank you so much for writing this, as it is exactly what I feel/felt everyday. So Thank you from the bottom of my heart, for saying what I feel everyday and cannot say out loud all the time.

    Reply
  21. 21

    Some Person

    I avoid this problem by staying out of restaurants. I can’t afford the outrageous prices anywhere, not to mention that eating in the presence of large groups of people leaves me with a bellyache.

    Reply

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