Dear Gluten Dude: I Want to be a Chef, but I Have Celiac Disease

dear gluten dude

Celiac can affect you in so many different ways.

It messes with your health.

It messes with your freedom.

It messes with your mind.

But I never considered it messing with your career.

Unless of course your goal is to become a chef.

That adds a serious wrinkle to things.

How do you go to a Culinary Arts program when you know you’ll be surrounded by gluten?

How do you know if things taste right if you can’t eat them without getting violently ill?

This leads me to the following email I received from Rachael. Her daughter Brie is in high school and her dream and passion is to be a chef and own a bakery. She has already committed to going to a Culinary Arts program.

But she was just diagnosed with celiac disease.

This is indeed a tricky situation and she has reached out to me and the school for help. Her email is below.

Here are my questions to you, my faithful readers:

Do you think it’s up to the school to alter their program for those with celiac disease?

Is it fair to the other students if they do?

Is it fair to Brie if they don’t?

What advice would you give to Rachael and Brie?

———————————————————————————

Dear Gluten Dude,

Here is a letter I recently sent to my daughters school. (names have been altered). I was hoping for ideas, suggestions or thoughts on what I should do for her. Thank you! We don’t feel as alone in our experiences since we joined you on Facebook.

Dear Chef —,

Brie is extremely excited to join the —— Culinary Arts family!

I am writing because some surprising health news has been discovered by Brie’s doctors recently. You wouldn’t know it by looking at her and her smiling face but she has been struggling with sickness on and off her entire life. When it came to our attention that there is a cause for the illnesses it threw our whole existence into a sort of tailspin. Although it was a big adjustment, I wouldn’t categorize it as challenging because we do what we have to do and go on. However, the outside world still has had difficulty recognizing her needs, including some friends and family.

This brings me to her plans to attend —— and your very exciting program. Like all accepted, she has worked extremely hard to get involved in this program; as this is her dream and passion.

I am sure you are aware of Celiac Disease; somewhere around 1 out of 130 people have it.

Unfortunately, Brie is now one of them.

You may have dealt with a student with this autoimmune disease before, and things may already be in place in consideration of Celiac at Carver. Then you may be able to provide me with advice regarding this. However, if this is not something you have encountered at ——; I will have some questions.

The first obvious one would be if there is any way to incorporate any gluten free options into the program?

With that in mind, as a Culinary student I realize she must be trained in all aspects of the Culinary Arts, wheat or non-wheat. I don’t expect that you would re-vamp your program by any means.

However, I would like to avoid making her sick. It intensifies her ADHD and attacks her digestive system. This brings me to the reason behind my email; to inform you. I do not feel that this would be the responsibility of the teachers to monitor necessarily. She is in high school; she herself will have to be very disciplined and try and refrain from tasting things she has made with gluten.

We haven’t had that temptation around so far this summer (I threw away everything in my house with gluten and I bought her alternative flour so she can make her favorite banana bread, we only go to restaurants with gluten free options, etc.)

So this environment will be new and challenging for her in terms of living gluten free. I expect like any human she will give in. However, she does know the feelings and the consequences of her actions so she may not. This is going to be the case throughout her life.

Some have said to her to just give up.

“Why go into a program that you have the chance of making yourself sick?”

“High school is hard enough already…”

I’ll tell you, Brie’s positive attitude, determination, her dreams of saving money for Culinary College, traveling to France, and her newest idea of opening a Gluten-Free Bakery make it impossible to throw in the towel.

Her dream and her passion of Culinary Arts shouldn’t be spoiled by her different needs. Growing up “normal” is hard enough. We are not going to give up. If I could afford it I would provide you with four years’ worth of alternative foods, but that is not realistic.

All I can hope for is that what she finds in your program precedes your reputation of caring for the students, keeping the lines of communication open, and investing in the whole student. In other words, I expect that the program would work with her and possibly incorporate her ideas and suggestions of gluten-free options. Or for that matter that any creative idea will be fostered.

Thank you for taking the time to read this lengthy email. Again, any advice or suggestions are welcomed.

Sincerely,
Rachael

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37 thoughts on “Dear Gluten Dude: I Want to be a Chef, but I Have Celiac Disease”

  1. The Gluten Dude

    My advice Rachael would be to do whatever is humanly possible to allow your daughter to follow her dreams and passions. The fact that she has a passion at this young age is pretty special.

    At that age, I had no clue what I wanted to do with my life.

    Hell…sometimes I still don’t. 😉

    If the school won’t make adjustments, find one that does. (I know…much easier said than done.) Maybe there are programs out there that cater specifically to those with celiac disease.

    I always tell the Dudettes “every problem has a solution”.

    I wish you all the success in the world in finding your solution.

  2. The CIA (Culinary Institute of America) opened a gluten-free training facility and have courses they offer for students. It is definitely possible and worth asking. She can take special precautions in her schools class – gloves and a mask to minimize exposure during the breads component. ASKING the school to assist is a great first start. You can wave the ADA flag if you have to, but I do believe the school needs to comply and make a safe and adequate space for core classes, I am not sure if it applies to vocational.

    1. I talked to their instructors in San Antonio, and I would never trust someone trained there to cook safely. 🙁

  3. She should follow her passion – she would be an amazing chef for all people with food allergies – not just gluten. Having one makes you recognize what people go through with the others.

    Mask and gloves for the gluten component of the practical classes may just be enough for her – she can’t taste what they have made, but I can see her and her celiac being a great teaching resource for the entire class if used properly by the instructors.

    The allowances they would have to make for her (and there will be some) would be offset by the fact that she would be a teaching resource helping others realize the seriousness of food allergies period, so her presence would be an asset.

    A lot of this depends on how creative and involved the staff at the school would be in this – and if that school does not want to go along with it, find another. There will be one out there.

  4. Hopefully the school will do everything they can to keep her safe AND at the same time use her enrollment as TEACHABLE MOMENTS for other students. This is a tremendous opportunity for the girl to teach the school and the school in turn to teach all students not just how to cook gluten free and to accommodate future patrons of their establishments, but also to teach inclusivity and tolerance of others.

    I wish this girl luck and strength to advocate for herself over her time at that school.

    I would really hope this mother follows up and keeps us informed of how the school handles the situation. I’m really curious about this.

  5. I would say that, unfortunately, she should refrain from cooking or being around ANY gluten containing food being prepared…inhaling flour or even coming into contact with residue on counter tops can cause many people problems…

    That said, gluten free foods are becoming more well known and in my area (Orange County, CA) I know of at least one entirely GF bakery. The woman who runs it has a son with gluten related problems and is very very careful about keeping gluten out. So it definitely *IS* possible to run a GF based food business, she should not give up hope. =)

  6. Denise SanFilippo

    Hi Gluten Dude and Rachael,

    I know a little bit about this topic. I am a chef with Celiac Disease.

    My one son is on a gf/cf diet for his Autism. My husband and other son are gluten free for their ADHD.

    I went to culinary school prior to knowing about my Celiac disease. I ate everything I made and school. All the while, not knowing the thing I love doing, baking, was getting me very sick. After finishing school, I went on to work at a caterer and then a bakery as their lead pastry chef. So when the doctors told me I had Celiac Disease, you could image, I was stunned and thought my career was over.

    Fast forward: I have healed my body and my family’s bodies from the inside – out. I have dedicated all of my work toward educating and working in the gluten free community. I teach restaurants, food suppliers, school educators etc. about gluten free and cross contamination. I have had the honor to work as the culinary manager for the gluten and allergen free expos , worked for Beth Hillson(Living Without’s food editor), American Celiac Disease Alliance, helped open, consulted opening gluten free bakeries, worked along side some of the most talented chefs, “that happen to be gluten free”(Beth Hillson, Robert Landolphi, Carol Fenster, Lee Tobin, Joel Schaeffer, Laura Russell, Kyra Busshiach the list goes on), consult and lectured for conferences ranging from Autism, holistic mothers, restaurant associations, high school culinary students and at Williams Sonoma as one of their culinary experts.

    In a nutshell, it was one of the best things that has happened in my life. For myself, my family and the many people I have helped along the way. When I started my journey I never imaged this is where I would be. I am grateful everyday to be a part of this wonderful, giving gluten-free community.

    My advice is for your daughter to BE the change. What amazing experience for all your daughter’s classmate (the future chefs) to get a hands on experience with food intolerances and learning how to serve people safely. To learn about cross contact, recipe adaptation and hidden ingredients. Every paper she writes, menu she creates, mock restaurant she forms; she is teaching not only herself but her fellow students, educators and future classes. The students will not only learn about serving people with Celiac, but people who have a gluten sensitivity, gluten intolerance, Autism, ADHD, food allergies, Infertility issues, Cancer, Crohn’s, triathletes, people following a Paleo or SCD diets or specialty diets for other health reasons.

    If the culinary school won’t listen and adapt to her needs, find a different school who gets it.

    You should be proud of your daughter for wanting to be the change and how many people she will positively effect in her community and her life.

    Please let me know if you need any suggestions re: safe practices for her school.

    Wish you all the very best!

    Denise SanFilippo
    twitter – @managinggfree

    1. What an inspiring post! It makes me want to be a chef and I have problems cooking instant rice.

      With Celiac Disease occuring in at least 1:133 and gluten sensitivity estimated at 1:16 it is timely for culinary institutes to create a niche for gluten-free chefs . At the rate gluten intolerances and sensitivities are being diagnosed it may soon be a major portion of the patrons they serve.

      Thanks for giving such great insight!

  7. I feel for Brie. I’m in the process of changing careers now due gluten exposure with my previous occupation, but I’m finally being forced to pursue my passion because of it. I don’t think I would have otherwise. So it’s sort of been the opposite for me.

    Here are some Chicago-based folks who are involved in professional gluten-free cooking that might be able to give advice via email:

    – Da Luciano’s (in River Grove if googling) chef went to culinary school and now is the mastermind of a lot their GF dishes and baked goods. Sometimes he’ll even make a GF version of something that isn’t on the menu just to see if he can. Four of the family members who own and run the restaurant have celiac so he’ll make dishes for them that they never got to try since they were diagnosed as kids. If you called, the family members are super nice and would probably be willing to put you in touch with him to talk through ideas or suggestions for the school.

    – Chris Koetke is the head of a culinary school here in Chicago and has done GF dishes on his TV show (Let’s Dish). His email address is available on his bio through the schools webpage. Maybe he might respond with some helpful advice?

    I wish Brie all the best in pursuing her passion. Where there’s a will, there’s a way!

      1. The Gluten Dude

        Thank you Jen for your input. Interesting that gluten free made you follow your passion. Sometimes things have a way of just working out.

        1. Also, meant to mention that Da Luciano maintains two separate kitchens—GF and regular. The chef and family might have some really good ideas for Brie and her school of choice for set-up, configuration and process.

          1. We have an Outback (the only one) in Roswell, GA that put in over $275,000 into making a separate kitchen for gluten free!!!! It is great my daughter can get her favorite…boneless chicken wings and fries. They even had Rudi’s gluten free bread. They can make just about EVERY item on their menu GF, down to GF beer battered shrimp!!!! You couldn’t even tell the difference between the blooming onion!!!!!! I wish more restaurants could do that!!!! I believe the owner’s wife is Celiac and the Manager’s are as well…

  8. With the real world education they’ll receive, Brie’s classmates will be leagues ahead of their non-food allergy-knowledgeable peers. The need for chefs who can deal with food allergies is only growing. If the school can’t see her as an asset to their program, she should find one that does, and not look back.

  9. I appreciate all of your support and much welcomed advice!

    Update:

    I spoke to Brie’s teacher and she is willing to keep the lines of communication open and seems willing to help.

    The teacher suggests that it is a small class size, and that they really look out for each other and become like a family.
    She said for the first few months they will be working on saftey and knife skills etc. So it probably will not be a concern for a while.
    She also mentioned that If I wanted I could purchase a seperate food processor for her at school.

    Brie attended a Chefs camp this past week and Chef Diane made alterations for Brie. Even having the students make Gluten free desserts. She suprised Brie: Brie said “I cant eat that” Chef said: “yes you can” because she had swapped out the flour for a gluten free option and none of the students even noticed the difference!

    Anyway, I am unsure about the road ahead, but I will update you mid year on how it is going.

    Thanks again!
    It is so great to have you all out there!

  10. I forgot, while a small thing, It is another small consideration I never thought of before. At the Chefs camp Brie forgot to wear gloves while washing the dishes. So far no obvious ill effect other then she has been exausted, but she also has been in camp all day.

  11. I feel for Brie and the struggles she is, has and will endure. I went to Le Cordon Bleu -Portland for Baking and Patisserie just a few months after finding out my best friend had Celiac. Because of it, I was on the look out and found/talked to another student who had it and was doing the degree with that same idea in mind, to open up a gluten free bakery. She made an amazing Gluten free baguette one time!

    But while I was on the look out, I didn’t find my focus until my senior year at a school in Louisiana for management. I had a pastry degree but I was very sick that semester and at the urging of my best friend’s mother, I took the steps I needed to to find out that I had a reaction to wheat and gluten. While not a full blown Celiac, my wheat allergy is rather sensitive and I can’t work in the industry very easily at all.

    Right now, with two degrees, I still can’t find a full time job that allows me to do the things I love. But I haven’t given up hope and listening to Brie’s story has only doubled my resolve. If there’s not a job out there for you, create it. People say that training for normal bakeries won’t lend itself to gluten free baking but knowing basic principles of why things work the way the do has helped me catch up fast with regards to gluten free cooking and baking. It’s a hard road but it’s far from impossible and I wish Brie all the luck in the world.

  12. My daughter is thinking about becoming a chef, she has Celiac disease and I am trying to support her desires. I have been trying to find culinary schools that have a gluten free program. Does anyone here know of such schools where I can get more information??

    Thanks in advanced

    1. Hey Eric…I do not know of any off-hand, but hopefully you’ll get a response from somebody here. Good luck to her.

      1. Thank you, Hopefully someone will know or at least point me in the right direction. I thought this would be easy. Can you recommend a good book from a chef with Celiac?

  13. Hi everybody!!!

    This is the mid-year update my mom was going to post but I figured it might be cool to take a shot at it.

    School is going amazing!! I love high school and have made lots of friends. My peers in the kitchen are totally understanding and always have my back. Wich is awesome! Sometimes a “Hey do you want this cookie… oh yeah I forgot, Never mind! sorry” comes up once and a while but it makes me laugh because I know my friends are trying there best to remember and that alone is truly awesome.

    In the kitchen im always wearing the XLarge gloves wich is good but because of my celiac and being so petite they always fall of my hands!! Lol. Other than that I stay AWAY from the pastry section of the kitchen, the big bin of flour, and the dishes as much as possible (wich isn’t always a bad thing 😛 ). Im usually the one to make the salads so im a pro at that now, but I have worked on a lot of other things as well.

    Chef (my teacher) has been trying to do her best to remember but is always forgetting wich gets a little annoying every now and then. Sometimes she assigns me to the sponge cake or the eclairs exedra… and I have to say “sorry chef I can’t work on that”. I don’t feel bad saying it because it is MY celiac and I do not feel bad for having it. It’s me and im ok with it. I have come to realize that no matter what I do in life and the actions I take I will always have celiac and I accept it for what it is!! If you spend every day wishing you didn’t have celiac, it becomes more and more difficult to deal with. when asked ” do you ever miss *regular food*” I say “What the heck is regular food”. I usually get a response like ” you know, like stuff with gluten” and I say “NOT FOR A SECOND” because when I ate gluten I felt (I am having trouble trying to find words to explain the nightmare) worse than you could possibly imagine. Every day. Now I feel SO SO SO much better and the food is really not that bad!! Now that more and more people are hearing about it there is more and more to eat (And cook!).

    Now back to school. The kitchen is amazing! I get all bubbly inside when someone (especially Chef) comes up and asks me if something is gluten free because a customer coming to eat at the cafe (Did I mention that we run a cafe at our school?? 😀 ) has Celiac and requested that all the food is gluten free! Its amazing to me how much people that don’t know are so willing to listen to what you say because they know you as “the expert to talk to” in the kitchen about celiac. 🙂

    Thanks for taking time to read this and leaving those AWESOME comments!!! I read each one again and it got me thinking, tomorrow I might do something big soon! I will have to keep you posted. Btw: If you have any questions for me I would be more than happy to answer them the best I can!

    XOXO,
    Brie

    My inspirational quote of the day:
    “You may not control all the events that happen to you, but you can decide not to be reduced by them.”
    ― Maya Angelou

  14. Miss Dee Meanor

    So happy to hear from you, Brie! It is obvious that your attitude rather than your disease defines you. You are an inspiration to us all! Keep us updated on your progress. I think you should be the first Celiac Top Chef!!

    1. Thank you! That really means a lot! And hopefully one day I will have that opportunity to compete for a title like that one.
      -Brie

  15. Alison Allsbrook

    I definitely think she should follow her dreams! I went to Culinary School and a semester before I was to graduate I was diagnosed with Celiac Disease. I was not about to let all my hard work go down the drain. I spoke to my teachers and they were very understanding. Not only that, but I managed to obtain the Culinary Excellence Award that year. I even did my capstone final completely gluten free. I think she would do great in culinary and help bring awareness into the field about allergens and intolerance’s. Best of Luck!!

  16. This blog gives me some possible hope for my son. He was diagnosed with celiac disease, and after a long recovery time, his desire was to take culinary arts. Unfortunately after 3 months into the program he is having to remove himself from the program as he has become quite ill. I have been searching for a gluten free culinary school, but cannot seem to find any info. If anyone knows of any such school, we would be grateful for the info. Thanks so much

  17. I feel like your daughter should have emailed them herself…. I don’t think parents should be in contact with their child’s chefs…. Please don’t be the parent that calls their child’s job because someone was mean to her…. geez. I have ADHD and my mom has nothing to do with my college. I handle that as an adult and by myself.. goodness. Parents let your child be an adult

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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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