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38 Comments

  1. 1

    John

    I fear that the faddism surrounding gluten free leads people to believe that anyone eating gluten free is a food faddist. It’s hard to defeat such a conclusion, since it’s probably correct 85% of the time, but very wrong the rest of the time.

    I sense sometimes when I order gluten free that folks think I’m just being silly.

    Reply
    1. 1.1

      Gluten Dude

      You can’t see me, but I’m nodding my head.

      Reply
  2. 2

    Sarah G

    This mom did an excellent job!

    The fad diet jokes are definitely not helping matters. People are very rude and make fun of things they don’t understand. I try not to say gluten free anymore. I just tell people I have to bring my own food because I have an autoimmune disease that requires a special diet and leave it at that. If they inquire more I just say something about not being able to have wheat, barley, and rye. Gluten is a trigger word for many people, for the life of me I can’t figure out why.

    Reply
    1. 2.1

      Gluten Dude

      “Gluten is a trigger word”. So true. And so sad it’s come to that.

      Reply
      1. 2.1.1

        Ellen

        Frighteningly, I’ve discovered it’s a trigger word for doctors too. I saw a highly-regarded neurology specialist at the UCSF Medical Center earlier this year. I was trying to explain about a flare-up of neuropathic pain and other symptoms I’d been having. I wondered aloud if, perhaps, there might have been some inadvertent gluten exposure (an increase in neuropathic pain is one of my gluten-ingesting symptoms. I was medically diagnosed with celiac in 2002.) As soon as the g-word escaped my lips, I knew I’d made a mistake mentioning it. The sneer appeared. I was quickly cut off and everything else I said quickly dismissed. This doctor had previously seemed attentive, but it was as if I’d suddenly branded myself in neon as a neurotic time waster.

        Reply
        1. 2.1.1.1

          Betsy in Michigan

          So ridiculous! I always tell doctors that they rock when they respect and believe me (usually after an encounter with another medical professional that makes me fell like maybe I’m looney).

          Reply
    2. 2.2

      Jane

      Love “Gluten is a trigger word!” So sad that we have to think up tricks just to avoid something that could kill us. But, you cannot open a package of peanuts on a plane. I rest my case.

      Reply
      1. 2.2.1

        Sammy

        This is totally not true. It depends on the airline. I live in constant fear when we fly that he will have a reaction because delta still serves peanuts! My son has peanut tree nut allergies which are also “invisible” and life threatening. No need to throw another person under the bus.

        Reply
        1. 2.2.1.1

          Linda Lervold

          That is so true about the peanuts, I was shocked! I thought they didn’t serve them anymore but they do and my grandson is deathly allergic, so figure!! My husband is celiac and I too am more than annoyed at the jokes and looks you get when you mention the word, it is simply not taken seriously and I resent that. It is a seriously disease and people seem to think it is some kind of a joke!! Do not understand it. Two of my grandchildren also suffer from it, I feel for them and what lies ahead. I hope that more understanding in the years to come!!

          Reply
  3. 3

    Karen

    I agree, the Mom rocked it! As a fellow mom of a child with celiac, we plan & plan and are as prepared as we can be but in situations like the volleyball tournament, you have to balance advocating and “making a scene”, especially when your child is nearby. Each situation is different and you make a split second decision on what to do. I too would have gone in planning to hold firm to the cooler but you never know…. I also agree that the gluten free diet trend is not helping matters. On the contrary, I have become a walking- talking celiac fact sheet & I fear that I am beginning to annoy some. But stories like these & the constant barrage of incomplete or even erroneous news articles that get forwarded and commented on all over the internet, fire me up and give me more motivation to educate anyone and everyone that will listen! Sorry this mom had such a bad encounter. Thanks to this mom for doing the additional research. I am going to get myself a copy of the ADA , just in case…..

    Reply
    1. 3.1

      thetxlady

      I find an icy stare THROUGH the person, along with the words, ” i may be these rude things you are saying, but i know you are violating federal law right now. I can call my attorney, & the police to explain the ada to you, or you can let me eat my salad quietly. Choice is yours.”

      Reply
      1. 3.1.2

        GF_Daddy

        Double YES!

        Reply
  4. 4

    Jane

    I totally agree with all of the above comments. And kudos to the mom! She rocks! We live in bizarre times to say the least. And this is difficult to see now, but the teenage girl will remember this forever and know that her mom always had her best interest in mind. An incident much like this (but not related to celaic) created a bond with my teenage stepson and me that stands to this day — 25 years later! Mom rocks; Gluten Dude rocks! Keep up the great work!

    Reply
  5. 5

    Trudy

    Cheers Volleyball Mom!! Thank you for sharing this. I worry every time I take my 8 year old with celiac to a movie, a baseball game, laser tag party, etc about bringing in outside food. I hate having to have a confrontation, the embarrassment to my kid even when I am calm, and my fear that if I am refused I will go ballistic. I have been stopped but have not had any issues yet after I explain celiac- although 9 out of 10 times they respond “oh, he has an allergy, ok.” I gave up explaining that an auto immune disease is not an allergy. I think telling them that he will projectile vomit within minutes of ingesting gluten helps. I am going to start carrying the relevant provisions of the ADA with me as backup, hoping I won’t need to use them.

    Reply
  6. 6

    Michele

    Wow, this mom ROCKED! My daughter is about to enter public 4k, and I’m dreading it. I’ve spent many hours thinking about her future in sports and other activities, and how to handle situations just like this. I’m so happy to have such and awesome example to (unashamedly) copy. I’m also in the military and will be gone for most of her first year at public school. I know that my husband is more than capable of protecting and asserting her needs, but the ‘Mamabear’ in me is terrified.

    Reply
  7. 7

    Alanna

    Last week I was invited to the rehearsal dinner for a friend who deliberately found a restaurant for us to eat that had celiac safe gluten-free option (YAY!). That did not stop other invitees from making jokes about the fact that the restaurant had gluten-free options on the facebook page for the event. The jokes do hurt. They make my life harder. If these same people make jokes at the actual event, I no longer give one crap about not making a scene.

    Reply
  8. 8

    Laura

    I usually tell all staff/chef/waitresses when taking my daughter to a restaurant or place that hasn’t got gf food available- “she’s coeliac and will vomit/diarrhoea if she has a tiny crumb of gluten so we’ve brought her own food in” which usually defuses them before they gear up to tell us off. When my back is turned my daughter will shouty crying at people “you are not allowed to poison me with gluten!” when someone gets pushy about gluten being ok, which works as she’s 7, whereas an older child wouldn’t do that.
    Wise jobs-worths with an arrogant attitudes towards being right usually make me think they know very little, so I figure they aren’t engaged in the idea of learning anything new… My way of handling it is to think it’s best just to shrug off their attitude and get on with what you need to do to keep your child safe (eating gluten free indoors in this case).
    So sorry this happened to you, people can be jerks xxx

    Reply
  9. 9

    Matt

    I really like that line…

    “Managing celiac disease is like climbing a mountain – one foot in front of the other, learning from the last step, but always forging ahead. ”

    Being different and “high maintenance” is a challenge for sure, but I think in the long run it transforms us into stronger advocates not only for our health, but for other things in our life that we are passionate about.

    As for the lady with the condescending attitude, I know the type…we will all have a moment in our life where we will be humbled and need the grace of others. It’s a shame people have to experience that before extending compassion to others.

    Reply
  10. 10

    Marie

    This post triggered a horrible memory of an experience when I was newly diagnosed with celiac 6 1/2 years ago. I took my classes to a highly renowned science museum and because I was going to be there all day I packed a lunch with a brown rice wrap sandwich and a banana. My assistant teacher and I went into the small café to have lunch in between our field trips and she ordered a full lunch and I ordered a coke but also asked if they had anything gluten free I could order. They acted like I was speaking a foreign language. So we took our food (and my drink) to a table and started to eat. There were probably 15 tables in the café and only five of them were filled – and all with families from my school. Within five minutes a woman came over and told me I had to leave – that I was not allowed to bring outside food into the café. I explained that I had celiac and the café did not offer anything gluten free and I had to stay all day and couldn’t go that long without eating. She said I still needed to leave. I pointed out they had all these free tables and that she was kicking me out in front of my students. Didn’t matter. I was horrified, embarrassed – the school families were super upset. I followed up with a letter to the museum and brought up the ADA – which they initially didn’t respond to – so I wrote again and said I wanted a response and wanted to know how they were going to change this – either allow people with dietary restrictions to bring in food or provide food for purchase. There response was they were going to “investigate” the matter. I didn’t go back there for a field trip for 3 years because it was such a negative experience and this time combined classes so I wouldn’t have to deal with their insensitivity. I did peek into their café and still no gluten free options.

    Reply
  11. 11

    Beth R.

    On top of Celiac Disease, I’m not absorbing fat either (fun times at chez R), and have to adhere to a vegan diet. My SIL’s husband called me a weirdo over the weekend. Loved that.

    Reply
  12. 12

    Eileen Chmielewski

    I also carry a doctors letter with our diagnosis. I had it laminated and have it with me when we travel. It really helps. ADA plus that and I’ve gotten into everywhere. The ONLY exception are places that do gluten free. I try not to bring in food when they do it well (Disney, Hershey Park etc.) I want to support them in their efforts to help us.

    I have gotten in to COUNTRIES with that letter and only doing prepackaged items that are not fruit etc.

    Reply
    1. 12.1

      Cheryl

      Sadly, I can rarely ever eat at even these places. The Celiac went undiagnosed for so long there is too much damage to my stomach to digest anything much.

      Reply
  13. 13

    Ken

    I’m going to a LI Ducks game tonight, and I was informed there is no outside food allowed. I spoke to the concessions director from Centerplate and he took an advance order for my brother and I (which was helpful, but WHO wants to do that at a ballgame?!), and assured me everything is made to order and prepared separately. Hoping it works out, since I took a bit of a hit on Wednesday and it knocked me foggy and weak-limbed yesterday.

    Reply
  14. 14

    Cheryl

    This is called discrimination. It is vile, evil and totally wrong. We Celiac’s have to be willing to make noise, be a bother, and make life inconvenient for these wonderfully ignorant people while we educate them. That is always my key – they are ignorant. I am here to relieve them with superior education.

    When I approach such a situation, I offer to pay any amount as long as they accommodate my deadly illness 100%. I tell them that I have Celiac disease. I nearly died from it. Then I explain that the foods in my possession are the ONLY MEDICAL TREATMENT available.

    When they offer to “make me anything”, I GLADLY accept. Then I start to explain and explain and explain.
    I explain the consequences of trusting another human being with my medical treatment –
    NOT FOOD
    NOT MEALS
    BUT MEDICAL TREATMENT.
    I never refer to it as “gluten free diet”.
    – NOT. EVER. –
    I always call it medical treatment for a deadly illness.
    And I tell them there part of such a contract is to take full responsibility for any health issues that I might suffer as a result of them attempting to take over my MEDICAL TREATMENT for the day. (I could tell them about the $45,000 hospital bill.) Then I ask for the name of their lawyer so I can confirm that they will take this liability.

    I do this in ever increasing levels of volume while smiling like a total fool at everyone around as if this is fun!
    And I HOLD UP ANY LINE IN WHICH I AM ACCOSTED! And I do mean ACCOSTED!
    I consider it an assault to be forced to violate my HIPPA rights to privacy just to enter an amusement park, ball field, or anywhere else where normal are allowed to eat.

    To be honest, I only had to get to this point once. He offered to go get me plates for my food at this point just so I would be quiet, allow the line to move along and put my food in the metal detector.

    Being told that I can leave the facility, property or anything else to eat my own foods will automatically find me opening my wallet with the information from the ADA about Celiac being a disability WHILE I compare this to refusing to allow someone in because they need a wheelchair, or offer them a separate counter because of their race, or perhaps demand that a woman remove her burka before entering whatever comes to mind in the moment. Then I take out my phone and offer to call the number so the federal government can explain fully.

    We have to be willing to make noise, be disruptive and expect morons to need to be educated because they believe the news and truly stupid headlines.

    Laughing at me leaves me totally non pulsed. This is a passive aggressive form of assault. If need be, I can talk over them much louder. And I have no problems asking for someone higher up. And I refuse to move out of the line while we ALL WAIT.

    Honestly, what can they do, call the cops. I would ask the officer to carefully document the facts and get his name and badge number to call in a suit against these morons.

    This plan keeps me calm while idiots are choosing for themselves to continue to discriminate or to find a decent review of their service on social media. I don’t expect to ever have to actually use the extreme measures. Really once I offer to pay any amount as long as they adhere PERFECTLY to my MEDICIAL TREATMENT, I have deflated them sufficiently well that I know I will win the day.

    I even went to the special bar at a professional ball game with my own food, napkins, and purchased a soda. I laid it all out very nicely. When the guard came over, I did exactly this. The guard made some silly comment to “win” while walking away. I ate in peace.

    Reply
  15. 15

    Kirsten

    Thank you. Thank you to that Mom for sharing her story with you. Thanks to you, Gluten Dude, for sharing her story with us. I learned so much from her interaction with this man. She handled the situation as best she could in the moment. (We can all hope that we’ll do the same!) Then, she empowered herself from that point forward and took action. Her kids are very lucky to have her as their advocate. She is setting a great example for them.

    Oh…and thank you for planting the Snoopy, Come Home theme song in my head… “Snoo-ooo-oopy, Snoo-ooo-oopy, Come Home, Snoopy. Come Home. (Come Home. Come Home.)”

    Reply
    1. 15.1

      Gluten Dude

      Yes!!

      Reply
  16. 16

    deb

    People are people. We can’t go around hating everyone because they are ignorant and don’t understand our illness. If we did, we’d have very few companions in this life and we would rarely leave our homes trying to keep from going insane in the face of all that ignorance. We were born with/developed a disease. We can use it to help others who were born with/developed it too, and we can help people who don’t have it to have more empathy or compassion towards people who aren’t just like themselves. That is why WE have it. Because not only can WE handle it, WE can also use it to help others. Often, people say, “why me?” I think we are given exactly what we need and what we can handle to accomplish some kind of good in this world. This Mom did just that. Without threats. Without yelling at anyone. The Director admitted being ignorant and apologized. He is human. All ended very well. Keep helping. Keep teaching. And be glad for the opportunity to do it :)

    Reply
    1. 16.2

      Matt

      I couldn’t agree more and couldn’t of expressed it as well. Endure with grace and teach with humility.

      Reply
  17. 17

    Lea

    I have had the best response when I have phoned venues ahead to discuss their policies and work out a procedure for how to bring my food in. Should it be necessary? I don’t think so. But if I have the contact person’s name who can facilitate entry there usually isn’t drama.

    Reply
  18. 18

    Greg

    No outside food allowed is EXTORTION. I thought THAT was illegal.

    Reply
  19. 19

    Margo

    I agree that this mom rocked it! Part of her reaction had to be from simply being stunned that someone could be so cruel! I understand that most people don’t know about Celiac and Gluten Free, but in this world where people have to be very aware about what they say so they don’t step on other people’s toes, this is beyond ignorant. Common decency should tell a person that just because you don’t understand something doesn’t give you the right to laugh at it or be cruel. It feels like every day I have to explain to someone why I can’t eat the shared goodies in the break room, even if they are gluten free, or why I can’t have even a little bit of gluten. This past weekend I was visiting a church away from my home and there were snacks put out for people to enjoy. Several of the older ladies tried to get me to eat something, to which I politely declined without going into why. One woman asked me more pointed questions and when I told her that I am gluten free her next question was if I have Celiac Disease. We sat down and had a great conversation! She doesn’t have it nor does anyone in her family, but she is big on education, nutrition and has done her research on this. It was a refreshing change!! Keep up the great work, “Mom”! You’re doing an awesome job as advocate for your kids!!

    Reply
  20. 20

    Cheryl Gainer

    I am so glad a referee came by later and let you bring in GF food. What an awful experience! I have found these steps work best with children and sports/theater/band, etc., etc.. etc. having “been there, done that” multiple times.

    Talk to all the entities involved a soon as possible. If possible get your band, school, theater, sport officials to notify the Guest Relations Office at the facility that someone with a disability is in the band/sport/theater/etc., and will need some accommodations.

    Then try to speak to the Guest Relations office or manager before hand if at all possible. Upon arrival, let gate or entrance attendant know you have spoken with guest relations. Have their Office of Guest Relations phone number and the name of the person you spoke to about your special needs if you have already talked with the company.

    It also never hurts to have paperwork such as doctor’s letter with diagnosis and orders for strict GF food and medication to back you up along with the U.S. Department of Justice phone number listed in your contacts on your cell phone AND a local television station that LOVES to do those spots about people being treated unjustly.

    I am always very polite, but make it very clear that I want to be heard whether it be by their company’s manager, guest relations office, Department of Justice ADA officials, and/or local media if need be. Most people will choose a manager or guest relations official over the other alternatives. My point is to educate the company/entity that there are people with invisible disabilities and while I don’t think every company/entity should be forced to offer a gluten free diet or any other diet for that matter, they should be willing to make accommodations for those on strict diets they do not offer.

    Reply
  21. 21

    Jan

    I carry a letter from my doctor that explains that I must follow a strict diet and avoid cross-contamination. In the letter the doctor requests that I be allowed to bring my own food. I have never had to use it, but I think it would help people take me seriously if I ever do need to use it.

    Reply
  22. 22

    Dru

    Gluten Dude, this blog has reminded me of a question that arose in my mind after the tentative dismissal of the class action law suit against PF Chang, with reference to the ADA. Although it’s difficult to draw specific conclusions from media reports, it appears that PF Chang’s won its argument that celiac disease does not qualify a person to be treated as disabled, and that her celiac disease constitutes only a minimal limitation on the major life activity of eating – “She can still consume all gluten-free foods. No authority supports plaintiff’s baseless position that she is disabled.” I’ve been waiting for media follow-up on this, but thus far haven’t seen anything. Unless I’m interpreting the report wrong, doesn’t this open up a can of worms for the community of people with celiac disease being able to use the ADA as support such as that won by the students at Lesley University, and for its use by people such as the woman initiating this blog post? I sure would like to see your comments on this.

    Reply
    1. 22.1

      Gluten Dude

      I personally thought the PF Changs lawsuit was trivial…

      Reply
  23. 23

    Nikki

    As a celiac who works event security I make an exception for those with food allergies and I’m starting to educate my coworkers and my company on life with food allergies. It’s been a slow go because we also have to educate the venues we work for. It’s frustrating as heck some days

    Reply

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