A Letter from a Non-Celiac. Wow. Just…Wow.

non-celiac support
helping celiacs

Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.

Today’s 30 for 30 blog post is for: The entire celiac community.

It’s been a great first week of helping my fellow celiacs. I’d like to end the week on an up-note. And this is a serious up-note.

I know we (or maybe I should say I) complain about the lack of support and understanding from the general population about celiac. I’ve gotten email after email after email from celiacs who are put through the ringers by those who aren’t educated about our disease.

But do you know there is a whole community of non-celiacs out there who have our back? Who understand? Who respect the trials and tribulations we go through?

Check out the email I received recently.

If this doesn’t put a smile on your face, you must be seriously botoxed out.

Dear Gluten Dude,

This is technically not a rant, but a message I want to share with you and all your fellow celiacs. I know you’re busy and have lots of battles to fight and people to educate, so I thank you for taking the time to read my letter. Here it is:

Dear Celiacs,

I understand.

I am not a celiac myself, but a dear friend of mine is, so I have spent countless hours researching the topic, adjusting and perfecting my recipes, looking for safe cosmetics that would make a nice birthday present, reading ingredients lists, and reaching out to manufacturers to get information.

And I am not alone. We are committed, and we are many. We are your partners, your friends, your sisters, your brothers, your mothers, your fathers, your sons, your daughters, your aunts, your uncles, your grandparents, your colleagues, your acquaintances, or even complete strangers.

We do our best to spread the word and educate others, so that if they ever come across a celiac, they will treat them with respect and understanding.

We perfect our gluten-free recipes even when we’re not cooking for you, so that we can offer you safe, delicious food when you come over. We take action when we find mislabeled products, misleading menus, and inaccurate information.

We care.

So if there ever comes a time when you’re feeling desperate, frustrated, misunderstood, all alone in the world, or just plain angry (and with celiac on your plate, how could it not?), think of this letter. Think of us. We are with you always, and we understand.

V.

On behalf of the entire celiac community, thank you V. Your words have touched my heart, breathed life into my tired body, and gave me a great reminder of why I advocate so strongly.

I’m pretty speechless…and how often does THAT happen?!

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29 thoughts on “A Letter from a Non-Celiac. Wow. Just…Wow.”

  1. It has been such a long, difficult week. I needed to read this. It brought tears of relief to my face. Thank you V.

  2. That made me get a little misty-eyed!! So wonderful to have a friend like that!! I am blessed to have a friend like that – she’s an amazing baker and now & then surprises me with some delicious GF treat she’s made just for me. I love that support. Another friend recently called out a co-worker who continually orders GF at restaurants, then gulps down the bread basket. My friend told this co-worker to STOP ordering GF if she wasn’t going to eat the entire meal GF b/c it just makes it harder for people who are REALLY GF!! I was pretty proud of my little friend. πŸ™‚

  3. I have a friend like. I just wish she didn’t live on the opposite coast from me. There are people like that out there. For that, I am grateful.

  4. What a beautifully written letter! Yes, I am so thankful to have people like that in my life as well. My husband is the first one who comes to mind. What would I do without his help and support and especially his DELICIOUS homemade brownies?!! πŸ™‚ Thank you Gluten Dude for sharing this. πŸ™‚

  5. Thanks for sharing! I, too, am fortunate to have good friends that go to great lengths to make sure that I not only have safe food to eat when I am with them, but to have special food that will make me feel included in whatever is going on. Sometimes I am literally moved to tears when I see the accommodations that my friends have willingly and HAPPILY made for me. After being faced with the skepticism of some, it is so wonderful to feel the support of my true friends. So a big THANK YOU to all of the people out there who are supportive and understanding proponents of this battle!!!!

  6. My 9 yr old was diagnosed with celiac disease about 1 1/2 yrs ago. I cannot say enough how blessed & supported we have been by those around us! Our own family, our close friends have really responded to our daughters food needs. Last summer we visited family in Italy and they couldn’t do enough for her – she ate very well!!! The home of her best friend even has a gluten free spot for her stocked w/safe foods! When I read some of the stories on here I’m so sad for those who do not have a strong support system. It also makes me know even more just how blessed we have been!

  7. Amen! I am not afflicted by celiac or NCGS but my husband and daughter are. I keep no gluten in the house, even for myself, because I don’t want my husband to have the reminders of what he can’t have and I don’t want my daughter accidentally eating something she shouldn’t. (She’s 4.)
    It just hurts me to the soul when I hear stories on this blog of people without supportive families or spouses to help them on their gluten-free journeys.
    I am researcher-in-chief, advocator general and kitchenmaster in my household and it’s my top priority to keep them healthy. How could you not be that for the people you love most in the world?
    We are so thankful for amazing family and friends who go out of their way to learn about the lifestyle and support us in it.

  8. OMG that made me almost cry! Thank you so much V!! One really kind and understanding person like her can wipe ten rude people from my mind. I just spent two weeks in Florida with my non-celiac daughter and son-in-law. I never got glutenated and they let me take over their kitchen when I wanted, bought GF foods, researched restaurants, and ultimately would do “whatever Mama wants to do” at mealtime. V, I can tell you your friend is so lucky to have you and I am sure she appreciates everything. Good karma will come back to you!

  9. V,

    I also join GD and our fellow Celiacs to thank you so much for taking your time to write! You and our dear friends like you are sincerely appreciated by us!

    V and GDude remind me of the following definition of “friends” – I would give credit to whoever wrote this but I don’t know your name – you would probably be my friend,

  10. There ARE lots of great people in the world! If not, I think a lot of us wouldn’t still be here. I had been so ill for so long when I was finally diagnosed that I wouldn’t have survived without the support of my family and friends. At 95 lbs. I couldn’t even get out of bed let alone learn how to shop and cook for myself again; they literally saved my life! Now that I am healthier I’m passing it on by helping out newly diagnosed family members and friends adjust their lifestyles too. It takes a village…

  11. Nancy in central Washington State

    Wow…someone is very lucky to have that person in their life. Not all of us are so lucky though. I know I’m not the only one who has been ostracized and isolated by sometimes well-meaning friends and family. Just last fall, my mother told me I was no longer welcome at her house because she “didn’t want to be responsible if I got sick eating something” at her house. Since my mother is matriarch of the family, the rest of my siblings and such have followed suit. Yes, this is the same woman who was told by her oncologist that Celiac disease isn’t hereditary (she has ITP) and refuses to get even the genetic test to see if she was the one who donated that wonderful gene. My father also is refusing to get tested and his reason is that the “bad blood” couldn’t possibly have come from his side of the family. So, those of you who have someone like the letter writer in your circle or family, cherish them and know that not all of us are that lucky in life. Oh and on a positive note, my 31 year old son has been showing signs of CD so he went to a new doctor and lo and behold, that doctor has CD herself and is very eager to get him tested and tested the RIGHT way.

  12. That really touched me cause I have my son who is always making gluten free goodies for me to test out. He uses safe practices and dedicated equipment. I have never gotten sick from what he makes. It is on a par of gourmet food. We all have folks who are in our corner and WE do appreciate you from the bottom of our hearts.

  13. The first letter made me cry and all of the comments that followed are indicative of the positive changes in our world. More and more families/friends are being supportive and understanding, I have been NCGS for the last ten years. My middle daughter (age 50) suddenly moved in with me nearly a year ago She is a trained chef, a great cook, has severe shell-fish allergies herself and has been as helpful and supportive as she could be. It hasn’t been easy. I do occasionally get glutened as I feel she is entitled to her cereal, bread and pasta- made in separate pots, separate colanders; every meal we share is prepared gf like tonight’s turkey scallopini. When I make a shrimp or scallop meal for myself, she stays out of the kitchen and I clean up everything before she sets foot into it. We made it work. We even grocery shop together! The point is, it takes effort and cooperation – it can be done. When my girls realized I was serious about this way of life and was doing it for my health, there was never a problem. And they know I never cheat. Ever.So they take it seriously too. Thanks, Dude, a great idea for the blog! Let’s all stay positive!

  14. I actually do have friends like that. I am very blessed. A few weeks ago my son’s college roommate was here and we were going to play a board game. My son’s roommate got up and washed his hands because he had eaten a sandwich and didn’t want to gluten the game pieces. How cool is that?

  15. I’ve been grateful to have very supportive family and friends over the years. It means a lot. But, V you go above and beyond, and you’re such a great example. Thanks so much for your letter. It really made my day. And thanks GD for sharing it.

  16. I am fortunate to have a (voluntarily) GF husband (I know, he’s the best!) who can read a label like a pro! πŸ™‚
    and several friends who took the time to learn about CD, gluten, cross contamination and they learned to read labels and how to cook safely for me. As my chef friend says, “it’s not rocket science and you’re my BFF, why wouldn’t I learn what to do?”

    yeah, I love her to pieces.

    Thank you for writing this letter, V.

    You’re the epitome of compassion. This confirms what I already know:
    There are more kind people in the world than there are asshats.
    YAAAY!!
    πŸ™‚

    (Sadly, the asshats usually get more attention.)

  17. Thank you V.! I know I really appreciate it. Just this morning, I called my sister-in-law to make plans for Easter. We were discussing the menu and what everyone will bring. She always tries to make sure that most of what is served is gluten-free (even though I tell her not to worry about it) and I had to ask if she could eat what I was bringing since she is on blood-thinner (she can have gluten but no vitamin K, which is in a lot of foods also). We joked that no one else better become sensitive to anything else or we won’t have much to eat! It makes it so much easier when we have a loving support group.

  18. Thank you, gluten dude! For this post and for everything you do! Reading your blog has become part of my morning routine πŸ™‚

    Although it is a daily struggle and sometimes I feel like Jennifer Esposito talking to Dr Drew when trying to explain this backwards disease and why I cannot have any more gluten free appetizers when somebody just broke the french baguette right over it, I am grateful for my dear husband who will not only pariently endure my ongoing health issues (8 months into diagnosis and on a fairly whole foods, grainfree diet, struggling with thyroid issues, too) but is my biggest advocate and partner in crime.

    This week my mom in Germany told me that both of my parents attended a workshop for gluten free baking! We are going to visit soon and since I will no longer be able to have any of my dad’s famous homemade rye bread or mom’s cake, they are getting educated on how to make this a delicious and safe welcome for me anyway. I was completely taken by surprise and feel immensely blessed. I will always try to keep that in mind now whenever this disease tries to alienate me at social gatherings: It’s ok, the people I love most DO care and are trying their best to understand! πŸ™‚

  19. Oh, I so loved this letter! My work community has been like that to me. Potlucks with a wh0le section for me, my birthday party last year all GF. My friends working and whispering and looking up recipes just for me. You feel very loved ! Even getting a little glutened with their attempts on occasion is tempered with knowing how hard they tried!

    1. Sue…you are so very lucky to have such great friends and coworkers! I, unfortunately, do not have that same luck! My coworkers could give two SH*TS whether or not I am included in our gatherings!!!!!!!! It is really heart wrenching–even after all these years! It makes me tear up each and every single time that I HAVE to sit through the “birthday party” and have nothing while everyone else is having a grand old time! The ONLY people that give two craps about me and my CD is my son and my husband. Even my own family does not provide for me when they invite me to one of their gatherings!!! As I said above….you are very lucky!!!!! πŸ™‚

      1. Donna,

        I feel for you because I go through the same thing. I’ve been gluten-free since my diagnosis in October 2012, yet no one in my husband’s family even bothers to accommodate my dietary needs at any of their gatherings. I always bring my own food because otherwise I’d starve. Dinners at my SIL’s house are torture at dessert time because she puts out dozens of wonderful treats that I can’t have. Meanwhile, my 14-year-old daughter looks up gluten-free recipes for me and reads labels like a pro. Before we went on vacation last year she took it upon herself to research restaurants in the area with gluten-free menus. My husband recently read every label on every box of Easter candy at the store looking for something safe for me. They make a difficult journey just a bit easier.

  20. Dear V,
    Thank you so much for sharing this with us! I have found it hard to believe that there are people out there that don’t have CD that really DO care–and this is speaking from many years of experience!!!!!!!!!! Reading this has meant the world to me and perhaps…just perhaps…my very weak belief in humanity has been strengthened just a bit!!!!!! Thank you again V!!!!!

  21. Two of my daughter’s friends from high school received duplicate pots and pans when they married. Rather than return one set, they left it in the box and put my name on it, so they use those pans when we are dining together. They are always on the lookout for new and interesting gluten free things to try, and they really make my life better.

    Amazing how well some folks react, and how poorly others do.

    I am truly grateful for these young people, and will be happy to call them friends for life.

  22. Easter Sunday Anonymous

    Thanks for this. In my first year of dealing with this. I’m spending Easter away from my family because of being g-free. I didn’t want the hassle of bringing my own food or the stress of asking how everything’s prepared. I should have hosted it myself, but I didn’t think of that until it was too late. It’s lonely. I’ve tried explaining it to them, but they don’t understand or don’t want to understand. This is on the same level as going on a diet or whatever other misconceptions I’ve tried to refute with them. I hope next year is better. Because honestly, the holiday is about the food, not about the company. (I see my family all the time, so no matter.)

      1. Hey easter!
        Welcome to the family. πŸ™‚

        Yes, it is always easier just to host, IMHO, but you should also go out for the holiday to see people, too. Try not to isolate yourself
        just because of someone else’s bad attitude about your medically necessary dietary needs. They will just have to get over it.
        Bringing your own food becomes easier in time, too. We all have several lovely insulated bags that go with every outfit and ensemble.
        πŸ™‚

        Just a thought, but maybe some literature on celiac– or NCGS whatever applies– might help them understand better why you are GF?

        Hang in there.

  23. Comrade Svilova

    My girlfriend’s mom told me she had found a gf restaurant where I could eat. I was doubtful at first, because it wasn’t a dedicated restaurant; but when I looked over the research she had done, it seemed that the restaurant kept things separate, was extremely careful, and very knowledgeable about celiac. I decided to give it a try. It was amazing, and I so appreciated that she had gone to the trouble of finding this place! I just mentioned to the waiter that I have celiac, and they immediately placed an order for gf bread for me, were very clear about the bread that was *not* safe and kept it on the other side of the table, and made sure the bussers and runners knew who at the table was gf. Three meals there, over the weekend, and I’m feeling fantastic! (Mon Ami Gabi in Las Vegas) After many times of me declining to eat at restaurants that didn’t have any understanding of cross contamination (I’d go for the company but not eat), my girlfriend’s mom has really learned what I need and did the extra leg-work to find a place for me. So nice!

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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