Cooking was a passion now it gives me anxiety


Hey. So, I can’t go through another night of crying at the dinner table. Two weeks ago I got slammed with a double diagnosis.

1) You have celiac disease avoid gluten and make an appointment with a nutritionist.
2) you have swollen optic nerves caused by psuedo tumor cerebri aka I have too much

cerebrospinal fluid due to being overweight and it’s putting pressure on my optic nerves. For the first week i was amazed to not be running out of meetings to the nearest restroom. I felt so much better and started losing weight immediately so huzzah no big deal right? Fast forward to this week and I’m trying so hard to not lose it at every meal. I hate the way my coworkers look at me while I check the label of every single ingredient at provided meals.

I hate not being able to eat a meal without my phone so I can look up every single ingredient. I hate that my kids don’t understand why I’ve become neurotic about food. I hate that the fact that they want biscuits makes me cry. I hate this! One tiny slip up and I feel like I have the flu coupled with weird allergic reactions. It seems like I have to hold it together for everyone else. I keep saying everything is fine but it isn’t. I’m mad that I don’t know how to make Christmas cookies with my mom this year or cupcakes for my son’s class party. I can’t make my favorite bread. I can’t even cook for myself let alone my family. Even the “safe” recipes I know have gluten hidden in them. My entire life I’ve spent baking. Baking was the first thing I learned to do in the kitchen and now it’s all upside down.

I’ve always loved to cook and it’s always been a bonding experience with my family and now it just gives me anxiety that I can’t express because I don’t want to upset them by being upset. I keep telling myself it’s an opportunity to learn a new style of cooking and baking but it doesn’t make me feel any better or resolve that the idea of cooking dinner just about gives me a panic attack. TL:DR cooking was a passion now it gives me anxiety and I feel like I can’t tell my family I’m freaking out because I don’t want them to worry.

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Heather 4 years 50 Answers 4252 views 0

Answers ( 50 )

  1. It takes time but it gets easier. I think we all have went through the same emotions.

  2. Your feelings are totally valid. I’m pretty sure every celiac has experienced something like it. Let yourself be upset about it for a little bit. Maybe a few hours. Then figure out what you’re gonna do and decide to find that silver lining.

    Speaking from experience it does get easier. It becomes second nature. You’ll learn a lot of ways NOT to make things and eventually learn to love and enjoy cooking again.

    But tonight be upset. Cry a little or a lot. You CAN do this. You WILL do this.

  3. You are going through the normal emotions that come with this disease. When you are ready, I think you should put energy into gluten free baking. There is an art to it and with your background you will be master at it. Really, you will! That being said, take your time adjusting to your new life the way you need to. Good luck!!!

  4. ❤❤❤ I know how you feel.. I just started a low fodmap diet (still waiting on celiac biopsy results) and its hard. I hired a dietician and she is really helping me. Here are some of her recipes. They’re all low fodmap AND gluten free 🙂

  5. Hang in their your not alone. I was diagnosed with intericrinal hypertension in 2009 and about a month ago with celiac. I have had many days where I sit and cry, beacuse I can’t just grab something quick anymore. I’m learning sometimes the tears help, and it’s getting better and becoming the new normal with time.

  6. Give it time, I promise it will get easier!!! My daughter was diagnosed 3 weeks ago, last week I felt like you….exactly everything your going through. Take it one day at a time, I found it easier to spend time at the store for her finding new things to eat. A typical grocery run took me 2.5 hours, I felt crazy! The best thing we did was talk to a real person that has it, locally, they will tell you what’s around and tastes good and what doesnt. During my daughter’s Dexa Bone scan last week, the tech running the test also has Celiac, she was the most helpful by far. Is it possible for you to find someone local? I am a baker for my kids, I am finding so many recipes that taste great when I make them.

  7. One foot in front of the other. You can do this. Totally normal emotions. It’s been 7 years for me. You will learn to bake and cook no problem. Mourn, cry, then pick yourself up. It’s a change, but keep the perspective that it could be so much worse. You will feel so much better and it is so worth it.

  8. I’ve been gluten free for almost 5 years now. It gets easier. We are so lucky there is so much more awareness now and so many gluten free options available. You can make biscuits. They even have a gluten free Bisquick. Barilla makes an awesome Gluten Free pasta ( my gluten eating family can’t tell the difference) I just made some Betty Crocker Gluten Free brownies today? I try to eat clean most of the time because it’s healthier but there are GF options out there when you want an occasional treat.

  9. Hang in there a little longer. Take it one day at a time. Hard boiled eggs, no gluten there. Grilled chicken, no gluten. Green beans. Spinach. Don’t be afraid to eat the same thing for a little while while your mind is processing all this new information. You need to give yourself a little time to take this all in. It’s overwhelming. It’s a lot. But you can do it and you will, just not over night. It’s going to be ok. Breathe. You’ll learn, eventually, how to make your favorite Christmas cookies and some new healthier ones. You’ll have family bonding time again in the kitchen, it’ll just be gluten free. You’ll get there, you’re just overwhelmed at the moment. It’s alright to feel this way and it’s alright to cry. It’s even alright to feel scared! But know in your heart that it’s going to be ok because it is. You’re not alone. Breathe. It’s alright.

  10. I had psudo tumor in high school it’s miserable! Unfortunately i had no clue about my celiacs disease until 4 years ago. You’ll feel better before you know it! I was having spinal taps weekly sometimes more. I can completely relate!

  11. Thank you all for the support. It didn’t occur to me until reading it that I haven’t given myself the chance to mourn or process any of this.

  12. Honey hang in there,I was a basket case in the beginning. That was 4 yrs. ago & just like we all started to cook when we were younger it’s like that. There are lots of recipes on Pinterest. Everyone is here for you,we are all in it together.

  13. Newly diagnosed for a month and I’ve been very open about it and have tried to educate people in my life…. start cooking and posting pictures with #glutenfree and people will start to ask questions….. and they for the most part understand. I’ve had some people look at me like I’m “being dramatic” but I’ve been clear…. it’s autoimmune and my intestines are pretty damaged. What I’ve found in some cases is co workers’ curiosities are causing them to run out and get tested.

    Today my co worker sent me pics of GF products she found at Costco!

    We can do this. We can make these changes. We don’t have an alternative so let’s just push forward.

    I’m the decision maker in my family too and they do look to me for direction to so…. I grabbed a hold of that and things have to be my way. ? and you know our way is always the BEST way

  14. So sorry for your double diagnosis. ? My daughter has a similar situation with Celiac and SUNCT at age 33. Just cropped up this past year with headaches and hives too. It’s been very very hard but it does get easier. There is a women in our town who went to culinary school to become a pastry chef and was diagnosed with celiac at the time of her graduation!! Life is tough at times but you can get through this one day at a time. There will be grieving of the losses and changes to be made. But I promise you can get the hang of this as time goes by. It is very overwhelming at first. Go slow if you can. I will be praying for you. Make yourself a chocolate cake or brownies using Bobs Red Mill mixes. You will start to feel better as you begin to find substitutions for your favorite foods. I think it was brave for you to identify how you are feeling and get it out. You can always do that here and get support from those who understand. I hope you start to get on top of this real soon. ????❤️❤️

  15. Praying for you!

  16. This phase too shall pass. Soon you’ll all have all the hidden gluten sources learned, and you’ll be an old pro. And please tell your family how you’re feeling. You might be pleasantly surprised at their understanding and support. Also, kids are much more understanding than you might think. I teach group piano, and when I bring up my diagnosis, I’m always pleasantly surprised to find out that all the kids already know exactly what celiac is and actually recommend products for me to try. Kids are really amazingly understanding people.

  17. You are the first person I have ever heard of that also had a pseudo tumor. I have a rare inflammation disorder and struggled with my so called tumor for over 20 years until I have up gluten. I’m one year in. I am grateful. I am grateful I can change my diet and get better. I am grateful I don’t take steriods anymore. They were only a band aid anyways. I can exercise without pain. I can eat tons of food. I just can’t have gluten. I miss bread. I don’t miss being sick and crippled with headaches and joint pain. I look back to what I was and what I am. I am grateful. This is the hard part. It gets easier

  18. Many of us still go through this feeling of panic, saddness, and madness. But we have to be vigilant with our health needs. I hate not able to go to thanksgiving, Christmas ECT. With family because now I am a freak labour getting cross contament. It’s part of my life now. It’s frustration because people do not understand. Family need to adapt for your health you are important to them they need you healthy. Remember it’s a science project in the kitchen. Till I learned to do things I went to green chef and payed for gluten free meals to cook. Which made it fun and I felt like a real chef.

  19. If the first thing you did in the kitchen was learn how to bake it’s just a matter of time until you learn to substitute recipes

  20. Elana Amsterdam she cooks gluten free/paleo my doctor suggested she has a book on cupcakes and baking. hang in there and talk with your family and share how your feeling. It can be overwhelmimg on your own.

  21. Prayers and ((( HUGS )))

  22. Oh my god, I feel you. I wish I could hug you.

  23. Please don’t feel bad for being upset. I cried about a gf grilled cheese today. Neither my SO or myself can have gluten, but I now can’t have dairy either. He wanted a grilled cheese so I made him one and it came out perfect. I had chips and hummus. Baking used to be easy. Now it’s hard and I have to relearn everything and it’s frustrating as hell!! (and GF flours can be expensive!)

    These groups are very supportive and a huge help. The struggle is real and it will take time, but it will get better!

  24. I am SO sorry!!!! That’s so awful. I can relate to having a lot of medical issues all at once and people get pissy with you for it. There are options out there for gluten free pastries that you mentioned and all kinds of goodies!! May I message you? I can give you specific resources when it comes to celiac that will help tremendously.

  25. I think that we all probably felt the way you do at some point. I tried to be strong for weeks after my dx and I did ok. Then one day it just hit me, I have to do this for the rest of my life. so I allowed myself one day to have a pity party and feel sorry for myself, then I picked my self up by my boot straps and went to work.. I still hate it, I still get mad, I still cry but I move on… Its the only choice! It does get easier, you just can’t live in your pity! You will proably become a favorite cook once you figure it all out!

  26. I had the same thing Psuedo and had major migraines. They sent me to the hospital removed 16cc of spinal fluid and haven’t had a major migraine in 5 years. Hope it gets better

  27. Heather I have pseudo tumor cerebri too. I have had it since 2002 and have had many lumbar punctures to release the spinal fluid and pressure. I lost a lot of weight and I will tell you I still have it. Don’t let them tell you it’s because you are overweight. I am also on diamox 500mg twice a day. Hang in there lady.

  28. Have you had your appointment with your nutritionist yet? She should be supporting you through this.

  29. I also have pseudo tumor cerebri, which is pretty much under control with diamox 3 times a day. They also told me that it’s because I’m overweight, but I’ve recently learned it may have had something to do with the Mirena IUD I had previously had. My daughter also has celiac and I know some friends and family don’t get it, but it’s been 2 years and we’re doing good. Try going on the Against the Grain Facebook page, she posts a lot of good recipes there. Hang in there and good luck!

  30. I have been there starting to get a little bit better just have to relearn everything we ever knew and people don’t get what the big deal is. I even had a friends boyfriend say he doesnt believe in celiac I wanted to punch him in the face lol I didn’t which I am proud of I found vent get mad and let it go is only thing I can do but feels good to know I am not alone keep your head up we will get through this one day at a time

  31. I feel ya. It takes years I think to get used to something like this. So your feelings are normal. You will go thru all stages of loss. At least I did. But don’t stop cooking and baking. In fact, you can be doing more of it with raw materials so you don’t have to worry about poisoning yourself. Just start using the types of food you can eat. Look into Cassava Root Flour. It’s is very similar to the taste of regular flour. Tonight I made gravy with it! The paleo & AIP diets. Best of luck. This is a new journey. If I can do it… i know anyone can. I HATED cooking

  32. I look up paleo recipes using almond flour, was reading a lovely chocolate recipe last night, so I’m thinking of giving that a go, good luck x

  33. Ok. Reality has set in just make a substitution with GF flour when you cook with everything and don’t tell your kids. They won’t notice and it’ll be better for you. Use King Arthur or Namaste flour to cook with. I have 4 kids with celiac disease. I don’t have it but have to be GF because I still breastfeed and she has to be GF. It’s an adjustment but I have to be GF for the rest of my life because my kids are so severe that we can’t bring in gluten into the house at all. When I have snuck gluten 2 times I get the gluten rash and feel crappy too, so I am never going back to it. My kids also have severe food allergies and trigger celiac attacks too.

  34. Yes it’s very hard when you are first DX. I have seventeen autoimmune disorders we know of. It was hardest when I was pregnant and Found out I have a list of many food allergies. Since I was pregnant I had to give up the foods for the unborn child. Unfortunately we hadn’t figured out I had celiac disease yet and I had my second tubal pregnancy. My celiac disease had eaten all the hairs on both of my fallopian tubes. I was devastated. Not only did I hear it’s heartbeat and see it on the monitor, but it had to be removed before it killed me.
    It’s been eleven years since I have been gluten free. I loved to bake. I take regular recipes and substitute all the time. I have a page long of food allergies I developed before we figured out I had celiac disease. Some very severe causing anaphylaxis from just the smell of it. I learned to work around my allergies.
    When I first found out about my food allergies I was so depressed and quit cooking and didn’t want to eat for awhile. It was all my favorite foods.

    I didn’t think it would get better back then. That was 23 years ago. It wasn’t easy. So by time I was DX with celiac disease in 2006, the evening before Thanksgiving I took my dx much better.

  35. There are some desserts that are gf and delicious. Like peanut butter bars or no bake choc / peanut butter and oatmeal cookies (just use gf oats). One time my son came home from middle school and proceeded to make cookies for me that were gf. He had made them in class That day. I will never forget, he said mom I have a surprise for you. Peanut butter, sugar and eggs, no flour. Anytime you go to event take something really good, something you love, so you will not be sad you can’t eat what everyone else does. I converted all my Christmas and Thanksgiving recipes. Everything is gf except desserts. I do make 1 or 2 that are gf. I always make extra of whatever, so I can have planovers.

  36. I don’t have time right now to read all the comments. Sorry if this was already said. Kubler defined grieving from her observations of people with chronic illness diagnosis. We have come to apply it to death. But that was not what she observed and studied. I think if you google grief and grieving, it may help you to understand. It does not make it easy. It just lets you know you are normal

  37. It will get better. You’ll learn new recipes. I also love to cook and have been gluten-free for a few years now. I didn’t like a lot of the GF recipes I found, so I developed healthy recipes of my own. Now I like most of what I eat better than the old stuff with gluten in it!

  38. U can still bake cookies. U can still bake cupcakes. These days theres alot of gf stuff. Just educate yourself and order the things online that u cant get in a store near u. (Pillsbury makes awesome gf cake mixes)

  39. Reading your post I thought, “that was me a few years ago!” It does get better/easier! With practice you’ll soon be an expert and won’t need apps/google very often. Definitely check out “gluten free on a shoe string”, she has adapted many great “classic / comfort food” recipes to gf. And baking is really not that difficult, just sub gf flour mix. It may take you a few tries but you’ll get the hang of it.

  40. Sweetie… please take a deep breath and know every one of us here knows where you are coming from in one aspect or another.
    Speaking for myself, I’m a huge cook and baker and share where you are coming from especially regarding the holidays. When I went from being very ill to changing everything about the way I eat, I too panicked. I also had a huge realization that I have never focused much on myself over the needs and wants of others so I carried that guilt too. Since my change a month ago, I feel great and because of that I don’t care what anyone thinks of me because I’m in charge of how I feel. I have people say they are sad for me etc. My answer is, there are many worse problems I could have so please only feel sorry for my poor choices to hurt myself by not eating foods that work for me not against me.
    Cookbook author and survivor, Danielle Walker has amazing resources and I just ordered one for holiday baking.
    Stay strong, and be proud to show everyone you are taking care of number one! You never know who’s life you will inspire by simply loving yourself

  41. I am currently waiting on my biopsy (24th of Oct). I made the mistake of going gf for a few days just to see how I felt. It was wonderful! I have never felt worse in my life than I currently do after putting gluten back into my body. I know what my biopsy is going to say, so I started digging on Pinterest. There are so many gf meals/deserts/breads that are supposed to be tasty. There are the conversion charts for different flours an all kinds of different things you can do. I have started a board just for GF and as soon as I get my diagnosis, I will be trying them and then printing the ones that work for me. I am ready to be done with the flu like symptoms. Hugs and prayers. ❤

  42. It gets better. You will become an amazing cook!!!

  43. You stay focused on you! You check, double check and triple check if that’s what you want. It’s your health and your body.

  44. Heather, this is hard but you can do it! You are obviously loved by your family. Allow them in a bit at a time, allow them to share what is so hard. Help them learn with you as best you can. They can be a tremendous support, even your kids. Let them love ALL of you. This will take time and you can do it! It is one bite at a time, then chew and swallow – no taking on the whole elephant here! Feel free to contact me, I remember so clearly our first Halloween after my whole family was diagnosed and I was concerned about poisoning my kids with gluten. I remember the struggle to make cookies and feel like I had a normal life. Please message me and I will happily give you suggestions that worked for me and our family that might make this transition a bit easier. I have been gluten free for 14 years now; I remember crying in the grocery store, and being so angry I wanted to throw things. I understand how others at work or church don’t understand and make things harder. What is important for you to know is: YOU CAN DO THIS! I look forward to chatting if you want to. My prayers are with you.

  45. I was like you straight after my diagnosis 10 years ago. We went on a family cruise with about 25 people for my mums 60th birthday and I was watching everyone eat these magnificent meals and I just wanted to cry. It does get easier. You will find new ways to cook. Eating out for me is still an issue as I don’t trust that restaurants who say they have GF meals know about preparing food and not contaminating it but you do get used to watching everyone eat and you sit there and either not eat or bring your own food. I know it feels terrible now but it does get better with time xx

  46. You can do this. Totally normal emotions. It’s been 9 months diagnosed and GF for me. You will learn to bake and cook no problem in time. Let them know how you are feeling. Mourn, cry, then pick yourself up. It’s a change, but you got this! We have to learn to be our own advocates now because most have no clue about this disease. My family can be a pain with this too, but I stick to my guns. You have to take care of #1 now more than ever. Stand strong, you can do this, it will get easier and you will feel better as well. Hang in there 🙂

  47. Heather, please don’t be so hard on yourself! I’m a baker too and have Been Gluten Free for 12 years now. I have several Recipes that I’ve converted to GF. You can definitely bake Chrismas cookies and make cupcakes, only now they will be GF, oh and nobody will be able to tell the difference! I promise!!! Please let me know anytime you need help.

  48. I’m so sorry for you I know how you feel, I once also loved cooking in the kitchen thought it was pretty much all over now I’m eating Gluten Free But just recently a weird thing happy Amy Grandson of all people said to me Grandma you should make videos lol so I started I did one for him, But now he’s in the kitchen helping loving it and it’s our time together and I’m enjoying it more everyday, Your bounce back and we are all here for you Take care

  49. Since going gf I’ve lost my baking mojo – I used to bake amazing cakes and muffins and decorate them.
    Trying to cook gf cakes has defeated me and I’ve given up trying xxx

  50. Try NOT to be upset so much…There are so many products out on the market for us…I have to be gluten-free and have been for 44 years….Just try to stay on the diet and it will become your way of eating….I know at first it is soooo hard but it becomes a regular routine for you…MY BEST WISHES TO YOU……

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