BrysonBrynne-41

Tell Me You’re Proud

I’ve been debating whether or not to write this post for a while now. I guess I decided to go for it, even though I’m not 100% convinced it’s a good idea as I sit here typing.

A little over a week ago, I experienced my first mental breakdown concerning my gluten-free lifestyle. It was very surprising to me, because I didn’t even get emotional the day I was diagnosed with celiac disease. I’m not sure why or how, but the reality of my disease hit me like a ton of bricks. I started crying, and then I cried myself straight to sleep.

My husband was right by my side, and I truly empathize with him. This wasn’t exactly the ideal situation for him – having a wife with ‘special’ dietary needs. But he does his best to support me in ways he knows how.

I try very hard to not let celiac disease control my life. In fact, I attempt to make it fun (thus the blog). But the truth is, it is not always as easy as I make it look.

I often think that if I make my lifestyle look fun and easy to others that it will be just that for me. For the most part, it works! However, there are a lot of times that are neither fun nor easy.

I don’t want to go into too much detail about why being gluten-free is tough. But I will say, it’s not the eating gluten-free part that is hard for me.

It’s all the people around me that are living regular lives. Those that try to be super accommodating make me feel guilty, and those that don’t remember or care make me angry.

You can’t win.

I told my husband that I think I just need to feel more appreciated. Though I normally don’t let anyone (including myself) recognize that being gluten-free is emotionally draining, it is. It would make me feel better knowing that my loved ones appreciate the work that I put in each day.

My loved ones are already super supportive in so many ways. They do everything from making gluten-free options for me to choosing gluten-free restaurants to eat at when we are together.

But sometimes, I just need a little affirmation. Every once in a while, I’d like to hear, “Brynne, you’re very strong. You do a great job managing your gluten-free lifestyle. I’m proud of you.”

I wrote this post, not because I wanted to throw a pity party, but because I hope it will help those who are reading it.

If you are gluten-free, let me just say that I am proud of you. I know it can be hard, but you are doing a great job!

If you know someone who has celiac disease or gluten-intolerance, I encourage you to give him or her this type of support.

You have no idea what a positive impact your simple words could have on them.

84 thoughts on “Tell Me You’re Proud

  1. Dani Sage

    Love this! I totally get how you feel, I wrote a very similar post on my blog a few months ago, but mine had a much more angry voice, lol. I don’t think people understand how difficult it is, I try to tell myself that I’m better off and eat healthier now, but I struggle with feeling so different and having things that I loved before, like going out to eat, become a chore that only puts me in a bad mood.

  2. Amber

    Brynne, this post could not be any more true and hit home for me, especially “if I make it seem fun and easy” and how you started a blog for it. It CAN be difficult and sometimes is tiring how much you have to constantly think about food or how often you feel alone because OF food. (Birthday parties, dessert or snack time among friends or gasp, when you go somewhere not expecting to eat and they serve food and you are left to drink water). I am with you about being angry, but at those who make being GF a trend or something to “try out” because I feel like it takes say from how serious the condition Ctually is. It almost belittles our disease, making it seem “cool and trendy” but it’s not. I run my own blog, feel free to contact me via the tab on there if you ever need to chat, from one gf girl to another <3

    1. Anne

      I have been gluten free since 1975. ( I was diagnosed after a small bowel biopsy and had been feeling really ill during my college years.) Believe me it is not easy, and the food items have come a long way in type and flavor since then. Yes I have cheated on the diet, especially when it is the holidays and when out with people but have tried in many years now to stay gluten free 90% of the time when I am away from home and 100% when I am home. It really gets to me the people who try this diet just to be trendy. In fact it makes me angry because believe me all of us who have to follow the diet would love for there to be a magic pill, liquid etc that we could take before meals and be able to enjoy all the foods which we cannot.. So I too had to vent when I saw this website, and hope someday there will be some medical break thru that we can eat what we use to before being diagnosed.

  3. Meg

    Thanks so much for posting! I am recently diagnosed with Celiac disease and have been struggling with it all. I almost feel like I’m in a mourning period. Knowing I’m not alone helps. Being gluten free (and it’s only been two weeks for me) has been rough, especially with the holidays. But I am adapting and adjusting and hopefully feeling better soon.

  4. Denise

    Thank you for expressing what I feel. This is my third year of being diagnosed and have really felt it. Not only do I have Celiac disease big have intolerances that result in basically the same symptoms as if I ate gluten. So, for me it means no gluten, dairy, corn, soy, or coconut and I limit sugar because I have negative symptoms from consuming too much. That makes it next to impossible to eat out safely. I do not have a Blog, but have thought about it. Thanks again for recognizing me, us that live with this disease.

  5. Mary M in GA

    Hi Brynne — I got diagnosed with Celiac in January 2013, and this post truly resonates with me. Once I learned how to eat, the eating part is relatively easy. But my friends that make comments, not out of a mean spirit, but of pure ignorance to how harmful even a small amount of gluten can be to me is very challenging. It’s tiresome to always talk about what I can and can’t eat and that while cross-contamination sounds ridiculous to the “average” person, it’s important to me to keep me healthy. I’m proud of learning to be GF and seeing the impact on my improving health this year, and I’m proud of you too! ๐Ÿ™‚

  6. Jessica

    This is a great post. I’m not #gf, but my 8-year-old is. I often cry, get angry or am just weary on his behalf and yet I know that I’ll never really get it. Not his real experience. What I hate is people who seem to think its easy because I guess I make it seem so.

  7. Tami Perry

    I could have written that post a few times myself. I’m lucky in the fact that I have an amazing support system with not just family but friends as well. They do what they can to have options for me even at my church. My husband and a few friends are always telling me they don’t think they could do it and that they are amazed that I haven’t purposefully slipped. But even with that kind of support there are still mental breakdowns. Mine is usually over Chinese food or flour tortillas. LoL

      1. Linda

        I have to make a quick response on Chinese food. Many Chinese restaurants do use soy that is not gluten free. So, you can ask them to make your chicken and broccoli or whatever in a white sauce. Double-check, but so far every one I’ve ever asked does this, they use cornstarch for their white sauce and they will gladly cook it in a clean pan separate from everything else. I’ve been gluten free for over 18 years now and for the most part, I can tell when something was not gf. I have never had a problem a Chinese restaurant when doing this. Hope this helps.

        As far as the blog entry goes, I struggled so much at the beginning. I’m not exactly sure when it happened, but it got better. Even back when gluten free food was disgusting and unheard of, I tried to stay gf, but would inevitably mess up. I don’t know when it actually happened, but somewhere along the line, maybe 5 years into it… not sure, I realized the temptation to eat gluten was gone. Yes, gone. I had somehow turned my thoughts completely around to where I actually looked at gluten as a poison. This was not a conscious choice, it just happened. There isn’t any food that will tempt me to eat gluten. I don’t ever cheat. It doesn’t bother me anymore to carefully eat the salad bar at Pizza Hut while everyone is enjoying pizza. It doesn’t bother me to go to a meeting where only doughnuts are served. It’s just become a part of life. It wasn’t always easy. I remember crying when my husband would ask if I could eat the salad bar while they ate pizza smelling it the whole time. I felt like no one really understood how difficult this was for me. I used to make cinnamon rolls for my family all the time. That was so hard to learn to make things like that myself and not be able to eat them. I just made a double batch of them last week for Christmas and another batch today. I have some brown bananas that I might make into muffins tomorrow, but no big deal either way.

        I say all this because I want you all to know… it gets better. It gets easier, especially now that there’s so much awareness of it and so many gf products. You will get into a grove. You will figure it out. You need to realize that there are alternatives that aren’t super expensive or hard. You learn to tweak things to your taste. You can totally do this. Persevere. Don’t give up. The more you learn about the gluten free flours, the more relaxed you can be. At some point you will accept this diet and be thankful that all you have to do because of Celiac Disease is change what you eat instead of having to take medication the rest of your life with side effects. Maybe those first years, I caved because I really hadn’t felt the full impact of how sick I got. I think I just got to a point that I wanted to not be sick more than I wanted the wrong food and the way I looked at gluten completely changed.

        There are so many quick and easy substitutes. Take advantage of them. I have a pizza crust that I can make up in 15 minutes and have my own pizza. I’ve learned that baking powder and xanthan gum are my best friends in the kitchen. An extra teaspoon or Tablespoon of baking powder will turn pancakes, waffles, quick breads, muffins and such into wonderfully moist treats. I don’t have much money, so I don’t buy hardly any pre-made gf food. If I eat bread, I’ll make it myself (bleh). It turns out fine, but I really don’t enjoy baking, but don’t have a choice. My husband will buy me some loaves of gf bread every now and again. I’ve just let bread go and don’t eat much of it. I finally found a recipe for a pie crust that you can actually roll out and hold in your hand. So for the first time in 18 years, I had an apple pie for Thanksgiving. I haven’t made a double crust pie until now. Yay!

        It’s late and I didn’t mean to write a book here, but if you want some of my recipes, I’ll be glad to share them (I have the best pineapple cheesecake recipe that has no crust and doesn’t need one.) I’d add them now, but it’s after midnight. Be encouraged. If you’ve gone 2 weeks or 2 years gluten free then, yes, you should be proud of your accomplishments. It’s not easy to adjust to. There are sacrifices you have to make. BUT… it does get easier. Trust me. ๐Ÿ˜‰

          1. Linda

            Sure Mary Ellen! I was given a wonderful gf cook book called 1.000 Gluten-Free Recipes by Carol Fenster about 2 years ago. It’s based on sorghum flour for the most part which has worked really well. I didn’t find her double pie crust until this past summer. Now, I’ve found her online. I love her cookbook because it’s not just recipes but lots of tips and help for working with gluten free flours. Here’s the link to her pie crust. Follow it to the tee and it will come out perfect. She gives important tips on the first web page, but then type pie crust in the little search box on the left side to get to the actually recipe.

            If I just want a quick bottom pie crust for quiche or pumpkin pie or something without the top crust, I just use the basic pie crust from Better Homes and Gardens (the red and white checked) cookbook and substitute gf flours and always add some xanthan gum.

            You mix 1 and 1/4 cups of gf flour (any combo works) with a 1/4 tsp of salt. Cut in 1/3 cup of shortening till pieces are the size of small peas. Sprinkle 1 Tbls of water over part of the mixture and gently toss with a fork. Repeat until all is moistened (about 3 to 4 Tbls). Form dough into a ball, and since it’s gf, you have to kind of press it around into the pie plate with your fingers. It works pretty well for a quick crust.

            But for the double crust by Carol Fenster, here’s the link. Enjoy!
            http://www.carolfenstercooks.com/index.php/2013/06/making-glutenfree-bread-pie-bobs-red-mill-cooking-school/

      2. Tami Perry

        Giving up gluten filled pasta and bread were probably the easiest things for because I never really at that much of it anyway. Being the cook and grocer shopper of our household makes it a little easier. I refuse to cook 2 separate meals. My thought was to do this eating change with the least challenge was to make my kitchen as gluten free as possible. So 90% of what is cooked in my house is gluten free, the other 10 is stuff I never ate anyway. I love to bake and for the first 2 winters being gluten free I didn’t bake anything but this year I dove in head first and I must say the results where great. Everyone loved my cookies and breads and didn’t even know they were gluten free. I have found lately most of my meltdowns happen when I’m hungry and haven’t been grocer shopping.

  8. Alison Frend

    Hi. This is the first time I’m reading this. I was diagnosed a year ago. And without a doubt, been the toughest year ever.
    No-one in my family has it and only know of some people who have it, but not close to them. So the only people I have is on websites/pages. I struggle big style. And I’m hungry all the time. And I only seem to be hungry to food that’s not good for me. I get no satisfaction from fruit. I need crisps/chocolate. My dietitians are no good and quite frankly aren’t around to prize the food out of my hand. Eating out is a night are and feel I need to explain my condition to everyone around me, including family who I feel aren’t as supportive as they should be

    1. Brynne Post author

      Having to explain over and over is the worst! Make sure you subscribe to my blog, so that you get recipe ideas sent straight to your email. I hope they can help.

  9. Cathy Snowball

    I love your post. My 7 yr old daughter was diagnosed this spring and we thought she was taking it all in stride. She also “hit the wall” a few weeks ago. She doesn’t want to eat out with other people if they are eating gluten food choices. It is hard to see her struggle. I am going to share your letter with her. She is a brave kid and we know this isn’t an easy thing to deal with.

  10. Janelle Garden

    This is perfect. I know, I feel the same way about wanting to hear family and friends say they’re proud of me. When I’m really struggling and feeling awful til 2 AM and sometimes am told that I should’ve been more careful, it’s so frustrating. It’s like, yeah, you try to not get a trace of gluten!

  11. Melanie

    This so hit home with me…thank for writing it. I was diagnosed with celiac 2 weeks before my wedding…10 years ago. It was supposed to be wedding bliss, and all I did was struggle with a whole new gf life style. Even 10 years later I still have tough days. However, with an amazing, supportive husband, I can get through anything!

      1. Brynne Post author

        I was diagnosed two weeks before the last swim meet of my college athletic career! Sounds like we both had fabulous timing with our diagnosis. I’m proud of you too ๐Ÿ™‚

  12. Moira Ann Harker

    Thank you for writing such wonderful words. I had a little Coeliac meltdown in November when work started to bring in doughnuts and cake on Fridays. I felt a little left out and unappreciated as this was the managements form of praise. I tried to go out on the employee’s Christmas party and because I wanted to join in I made bad choices and made myself ill. I just wanted desperately to be part of the cool crowd, just not realising that I have always been there. People did care but there understanding was a little wavy that one little grain, a pin head of gluten makes me ill.
    Feeling better now though but I think that there will be more Coeliac breakdowns
    Peace to all

    1. Brynne Post author

      I find myself being less careful at times just to fit in. I’m trying to be very careful to avoid situations where I do that. We need to stick together!

  13. Sara Smith

    Hi all, I feel your pain too. I have been gluten free for thirty years. Although options are incredibly improved- all i could eat then were rice cakes- people still don’t get it. A place i have worked for twelve years while GF still does not consider me when planning a potluck. They even commented to me on how great it was when “everyone” was served a free thanksgiving dinner. My comment, imagine how it feels for everyone to get to eat it but you and to get offered just mashed potatoes. So develop a thick skin, cause people really don’t get it. The only thing more aggravating than having no options is having your only option being eaten by someone who wonders what it like. Now at big potlucks I ask for those to be put separate or at the end of the line. But I have to say that it is getting so much better, and many groups really really try. I went to a restaurant last night that had their menu all marked with items that were or could be gluten free. Years ago I went in that place and they had no idea what to do. And the meals I have had to totally send back…I used to have to warn people I would send it back if I couldn’t eat it. So it is better, even though it seems terrible now. And believe me, I do not miss feeling sick. So even though it is still hard…it does seem better now and is getting even better every day.

  14. Jayme Denson

    I have been glutin free since October 2011. It’s not easy but have lots of support and I feel and look so much better that it makes it easier. The other thing is that my oldest daughter realized she too had it and it changed her life, maybe more than mine as it affected her moods, maybe all her life. It does run in families and I see the beginnings with my other younger children. It is so worth it, I do make it a game, how normal I can make my life with it. Hang in there!

  15. Crystalin Muniz

    Thanks you so much for writing this. Being Gluten free is one of the hardest things I’ve ever done. It’s been 2 years since diagnosis and it still a struggle. My younger sister is very supportive and tries so hard to make it easier for me. Other family member including my husband are not so much. They still offer things to me that I cannot have and think nothing of it. If it was not for my sister I think I would have already lost my mind.
    So again thank you and I too am very proud of you. ๐Ÿ™‚

  16. Leanne

    I can relate to this, I was diagnosed coeliac just over 7 years ago and I still have my rough days. Had a few bad ones lately with Christmas dinners we have been to the have been a fixed price meal where I have had to complain about the lack of options for GF especially as I am paying the same amount as everyone else! The worst of these have been pre-dinner drinks and food, where there is absolutely nothing to eat, and don’t get me started on dessert where everyone is eating a fantastic looking cake etc and I have been served fruit salad – again I am paying the same, it would be nice to have more options especially as these events have had months notice that gf meals will need to be provided.
    I am very lucky that I have great friends and workplace who strive to ensure there are options for me and I truly appreciate them, on the opposite end of the spectrum are my family who I think have the mindset that it is all too hard and if they ignore it will go away – I even get asked to take me own food to family get togethers. When they come to my house everything served is gf except the bread. One day perhaps another family member will be diagnosed (not a nice think to wish for) and they may change.
    Hang in there, we all have good and bad days and just have to hope that the good number more than the bad…

    1. Linda

      Leanne, I completely understand. I’ve been there. I just wanted to add that when we have Christmas or Thanksgiving or Easter dinners, I don’t expect them to cook gluten free. It’s expensive to buy and if they only use the flour once or twice a year that’s too much extra. I have a kitchen full of gf flours and all. I gladly make my own gf stuffing while my mil makes the regular stuff. I gladly offer to cook the turkey and make the gravy gf. I made 2 pumpkin pies and 2 apple pies this Thanksgiving, one of each being gluten free. When we go to my mil’s house, she tells me what she making and then I just bring some side dishes that are gf and “normal” like potato skins, or whatever. I feel bad about your work, but hang in there. Gluten free awareness is growing by leaps and bounds. I’ve asked ahead of time who’s catering and called and talked to them about my diet and see if they can do anything. They usually just hold out some meat and don’t add any sauces or stuffing on it and keep it plain for me. The dessert will be like you said, mainly fruit. But that’s okay. It’s all part of this gf life we now live. Slip a candy bar in your purse to eat on the way home or something. ๐Ÿ˜‰ You are doing wonderful and keep it up! I don’t get upset anymore when I can’t eat something. I just laugh and ask them if they’re trying to kill me or something. Eventually people try to buy some things for me to have at meetings and stuff and I don’t feel one bit guilty. Enjoy it! Hope things get better for you!

  17. Christina

    The hardest part Is that nobody can truly understand what is like to have to be gluten-free. My husband & family have been very supportive, but I still struggle from time to time, just like you. It’s hard having to explain over and over again what gluten is and the products I can’t eat. The holidays are the hardest because I feel guilty for special dishes being made because of my dietary restrictions and the ones that aren’t are so tempting to eat. The one thing that gives me comfort is that I have my good health back. I feel good and look good and that makes me strong. I struggled with bloating, joint pain, headaches, GI issues and countless other symptoms for years. I thought I was going crazy and was very depressed because of it. I have been strictly gluten-free for over a year and everyone sees a huge difference in the way I look and act, including me. I wish I could eat gluten, but I can’t and I have to accept it. When I see other people eating gluten I don’t get upset because I know each of us has struggle we’re fighting hard to win. I’m proud of myself for never giving up when doctors couldn’t figure it out. I’m proud of myself for not only gaining knowledge about my new lifestyle, but for sharing it with others. I’m proud that we live in a time where gluten-free is an option at many grocery stores and restaurants. I’m proud of people like you who share their thoughts & feelings and help others in the process ๐Ÿ™‚

  18. Jenny

    Brynne,

    I completely understand with everything that you are going through – my 9 year old daughter was diagnosed with celiacs a year ago. While she is still young and has taken it in stride, I know how difficult it is for her. As her mother I think I find it just as difficult watching her “suffer” adapting to her new lifestyle. However in her case it was an instant change in making her feel better so I know the challenges our family faces are all for the best. Brynne, just know that you are never alone and I can’t imagine anyone not being proud of you.

    Jenny

  19. Melissa

    Hello, I am so happy that I came across your page on fb, I was diagnosed with Celiac in 2010 and yes it is an emotional roller coaster. But as I try to find a positive in every negative, this one has been kinda hard as everything happens for a reason. My positive reason came to me December 17 th of 2013. My neighbor lost his wife of 67 years. As I sat feeling so sad for him suddenly being all alone I remembered that he had told me he as well has celiac. I had only talked to him maybe 2 times in the year that I have lived here with my boyfriend. He thought how nice it would be to send him some gluten free food for dinner since I was preparing that for here. In a house of several and I am the only one who is restricted. So I did just that. As I found out he was just sitting down to have a bowl of cereal. It felt so nice to do that for him in his time of need. He lovedmy food and accepted an invite for Christmas dinner as well. Now we send him warm dinners and is so thankful. He lost the love of his life right before Christmas and is restricted by a diet as I am. I found my positive reason. Because I have the same disease as he does I understand the importance of not getting contaminated food. We each cross paths for a reason. Am I glad that I have this. Noway. But I am thankful that I can be there for this very sweet man in his time of need and made a nice dear friend and neighbor. So keep posting and thank you for your voice there are allot of us out there. And I know this road is tough for us all so I am proud of us all. Thank you again. Looking forward to reading more from you.

  20. Libby

    This made me cry, because I so completely agree! I cannot have ANY gluten, so cheating is not an option or I end up hospitalized. It is very hard and every time I bake or cook something yummy, I need to hear that people understand that I put much more time and effort into my dishes than glutenous. Sometimes, it feels like people don’t understand that it isn’t a choice for some of us. I love to find understanding and helpful people! It is getting better, and hopefully people will continue to be more educated! ๐Ÿ™‚

  21. Sarah

    Melissa – What a special story about your elderly neighbor. Very touching.

    I have struggled with giving up gluten due to Crohn’s but after my husband started hearing so much about gluten, he decided to give it a try. His going GF has made an amazing difference to me emotionally, and he feels better!

  22. Chelsea

    I love this post. Especially the part about ‘people try to make accommodations and then you feel guilty’ …that’s my every single day! I have non-celiac’s gluten intolerance, as well as a dairy intolerance. A few weeks ago I told my husband ‘I just wish it was easier. I just wish I could eat like a real person, and not plan every single bite’. ๐Ÿ™‚ thank you for expressing these thoughts!

  23. Candace S.

    Thank you so much for this post!

    I was told 6-8 months ago that I had celiacs via Dermatitis Herpetiformis, after a couple of years of trying to find out if I was Celiac (I have the intestinal stuff too), but I wasn’t testing positive for it. I was getting ready to go to Ireland and I just ignored the results until last week, when I just couldn’t deny it any longer.

    I have so many health issues, and have had for as long as I can remember, that appear to be related to gluten. It is hard, and it frustrating. So although I’m just now going through morning the loss of some of the foods I loved, and learning to navigate my way through eating this way – it is nice to know that other people struggle with the emotional stuff, even after they’ve been doing this for a while. Some of you who blog about it do make it look fun, and doable, and for that I am grateful. However, I like knowing that sometimes it is ok to admit that you’re having a hard time, and that it isn’t always fun or easy.

    So THANK YOU for keeping it real! <3

    1. Brynne Post author

      Sometimes, you just need to say how you feel. I was a little nervous to post something so honest, but I’m glad it is something that so many people can relate to :). Thank you!

  24. mylittlemod

    Love your post. My little girl is almost at the one year mark since diagnosis at age 6. At this age I have to do everything for her. Just recently I have felt a slump. I am tired of checking ingredients, juggling kids parties and lolly bags, other parents looking at me blankly or giving me the ‘are you serious’ look? Everywhere we go we have to ask what is in stuff and often get no real assurance and we have to walk away. This is our first GF Christmas and we have food coming at us from all directions – between class mates, treats from the teachers and shops offering tasters. A friend recently said to me that I run the risk of making my daughter paranoid and anxious regarding food as she reaches her teen years and I should pull back and let her make her own decisions right or wrong! Well meaning I’m sure however until you can walk in a coeliac’s shoes (or care for a little one) I don’t think you can really know how it feels. I am positive that as a family our whole approach to eating is so much better (and I considered us pretty healthy before). We have learned a lot and the best news was to see my daughter’s coeliac antibodies drop from in excess of 300 to 45 within 6 months. Her hair is growing way down her back. It didn’t grow before. Her skin is radiant and her slim little frame is filling out just a little. I couldn’t ask for more to see her look so healthy.

    1. Lou

      I am so proud of you as people don’t understand what the damage is, they think it is a fad diet. Keep up the hard work you put into it, the first year is much harder than people know. Plus, 6 years old.

  25. Kiki Lewis

    This is a wonderful article. Sometimes it is exhausting tracking every single bite and asking someone multiple times if something has wheat in it since when they first responded they were so casual and nonchalant about their response and you weren’t sure if they really heard the question! Whew! It was exhausting just writing that. ๐Ÿ™‚ Luckily for me the people close to me have been supportive, and when they didn’t understand anything they asked questions. But people on the Internet haven’t been as nice. Hopefully one day it will become as accepted as a peanut or milk allergy.

    1. Tami Perry

      What I find the most humorous when asking if something has wheat or such in it is getting the response of no it just has a little flour in it. My response is ok I’ll pass only to get asked why it doesn’t have wheat it in. Serious and this is coming from older people, I have to ask what kind of flour they say just flour, really they seem shocked that flour is made from wheat. Makes me laugh every time. Or to get told come on one bites not going to hurt you, and this by mom who is diabetic and cheats all the time.

  26. Lou

    I love your post…I have Gluten Sensitivity and I understand how hard you work at it too. With New Year’s Eve Parties coming up tomorrow… Now I know I am not the only one having trouble, I am normal.

    1. Lou

      I read this and it is so true…I feel that way too. I have been reading that Grass Feed Milk is okay and I have a lot of stomach trouble and need/take a Probiotic… So I got a bottle of Kefir (it was GF Certified) and drank a small glass and I can drink it, yea. I am so glad that I tried it because it even helps my stomach. Thank you for not being afraid to post things…I needed this site when I was new at this…I have been on this for 4 years now.

  27. Celiac Girl

    This couldn’t have popped up at a more opportune time!! I don’t even know how I found this blog, but an “angel” must have been sitting on my shoulder to point me in this direction to read & know I am not alone in this Celiac world & that others feel as I do!! I met a young woman who was just recently diagnosed a few months back & somehow, we became friends on Face Book, so, as this blog has, she also has become a very wonderful friend who understands my world as I do hers, as much as neither of us can fully explain to others, just what we live thru on a daily basis!! You’ve said everything here that I couldn’t put into words myself & I have shared this blog with her to let her know how much I appreciate her friendship & just how very proud I am of her also!! I thank you & am very proud of you also for blogging this very important message that is full of understanding & speaking for us!! I hope the New Year is full of bright promise for all of us living a gluten free lifestyle & better ways of managing it, if not a cure (which is highly doubtful) but I choose to stay as optimistic as possible & in touch with anyone I can help or vice versa!! Happy New Year to you & yours <3

  28. Sherry

    Thank you for your wonderful post and for admitting anger regarding gluten free issues. The hardest part for me are pot luck social events. I have found myself feeling annoyed at the prospect of bringing a dish to share with others but knowing that I will probably not be able to sample much of what any one else brings. Plus I live in an area famous for its microbreweries and must miss out on that fun as well. Sigh…
    It can be hard, very hard.

  29. jess deacon

    Wow, I could have written this myself! Stumbled across this by accident on fb but really glad I did. I was diagnosed with Celiac at the beginning of the year and, like you have tried to embrace it and possibly made it look too easy!
    My friends and family are incredibly supportive so I am very lucky in that respect.
    Two days ago I had a meltdown! Whether its down to the added pressure at xmas or it had been pent up for a long time but I certainly let it all, I couldnt pull myself together and ended up missing a night out with my friends ๐Ÿ™ My husband didnt really know what to do or say bless him!
    Im also suffering with low B12 at the mo am hoping when thats been resolved I might start to feel better and maybe get back to my old self. I feel like a different person since diagnosis. They say the first year is the hardest don’t they! Thankyou for sharing with us. Happy New Yearx

  30. Marianne

    Hi, what a fabulous piece to read. Well done. I am the daughter of a coeliac, so growing up we got used to checking and double checking food when out, when shopping etc, however the most frustrating was family friends who would not remember to accommodate my mothers needs, so she would end up hungry at events, having to leave early to get something to eat. It became something we accepted.

    Now though, I am also the mother of a coeliac. My youngest was diagnosed a month before she was 2, and both her and our lives changed. She is not as understanding as to why she has to have a ‘special tummy’, she finds it unfair.. It is! Explaining to a toddler they cannot have the birthday cake, cannot buy a treat from the school fair cake stall, they have to have something from the adult menu when out… It is not fair! I decided to make a change. I established a totally GF home baking business, to not only allow her to sample and enjoy lots of bakes, but to show others, that GF is not something unpleasant, is tasty, can be easy to do. I go into local schools to bake with children to raise awareness and remove the stigma of coeliac. Slowly things are changing, but I still give my little girl regular cuddles, and acknowledge, yes …. It is unfair!

  31. helen

    Ive been gf for 35 years. I was diagnosed young so dont remember not being gf. I dont have issues with my diet but totally understand how hard it must be for someone to change over to gf. I get the guilt thing, the amount of apples I ate as a kid just to keep other people happy,(they’d offer me a biscuit, then remember I cant eat ut and I’d eat the offered apple to kerp them happy!). Its not easy and I think im lucky knowing no different. Be proud, x

  32. Janie

    The more people that blog like yourself the better…I’d never heard of coeliac until was told I had it….I was given no information of the doctor and it was a case of go away and get on with it…
    After doing my research on what food contain what, it got a lot easier…and now to be truthful it’s no hassle…
    I have a far better diet now than I ever did…..so keep ya chin up it ain’t the end of the world…..

  33. Rachel

    I was diagnosed with severe coeliac disease back in feb 2010. Its been the hardest thing ive ever had to adapt to at the age of 17. I stick to a good gluten free diet, and manage my lifestyle well however i do struggle a lot with feeling depressed and low. Ive become quite emotional and find it hard to have a positive outlook on my disease. It does annoy me when friends and family just se it as ‘eating gluten free’ and thats it. However thats not the case its more serious and can affect you in many different ways. Another thing is when i visit family or ny boyfriends family, the only topic of conversation people bring up with me is my coeliacs and its seriously frustrating! When my biyfriend auntie decides one day that zhes going to eat gluten free because she cant tolerate it and then tells me what i can and cant eat! Unbelievably frustrating that she does not have the disease and she does not have symptoms and simply doesit becayse she can. This is quite annoying when u r dealing with it yourself. I know she is probably only trying to help but its hard to not say abythung to upset anyone! Sorry for the long rant! Anyone been in a similar siuation? X

  34. Ben's mom

    Thanks for writing this! My son, who is only 6, has been gluten free for 3 years now. I tried the diet for him after reading about the connection between autism (he is on the spectrum) and gut issues. It all made sense, as he used to get very sick after meals, and at the time I didn’t know why! I can’t count the number of birthday parties and social gatherings we ruined with him suddenly throwing up for no apparent reason. Anyway, your blog just reinforced for me the job I have as his mom to support him and tell him how proud I am of him. When we first started this journey with him, I was so careful about always taking food with us to match what would be served wherever we were going, and recently, I know I have slacked off a bit. Reading this post, I am reminded of the importance of helping him through this. Thank you!

  35. susy

    Thx you for the letter and support!!! I’m still in the process of the tests to be diagnosed if it’s the intolerance or the disease….It looks by the DC that it’s the disease, always struggling still.. feeling ill all the time and having a hard time staying gluten free. Hits hard emotional, mentally, physically..
    Once again thx for your words of encouragement.
    Susy

  36. linda

    Thank you for writing this blog…all that you say is exactly how I feel but couldn’t express it in words! My whole life used to revolve around where every bathroom was and how fast I could get to it! I have a severe gluten intolerance and a moderate dairy intolerance, which I do well with now in my regular daily routine, but sometimes, especially holidays, etc. I feel so overwhelmed, and it seems like so many people don’t really understand it…they think I will get over it soon, or it’s a trend I’m following?!?!? Well, anyway, all the comments are so true too…none of you are alone in this struggle. My husband is also a great support to me, he even enjoys adapting recipes to the gluten free life, he is benefiting from it without realizing it, he went for his annual check up and lost 12 pounds while not even trying, the doctor wanted to know if he was having any problems to make him lose weight and they had a little chuckle about the added benefits to him!
    Also, wanted to add, at first I just stuck to whole foods to avoid gluten but have now broadened my hunt a little and have discovered a few sweets and a sandwich bread that are actually good…try “Udi” brand, it’s usually in the freezer at health food stores..rather pricey but worth it.
    P.S. My husband and I have often discussed how hard it must be for people who also have celiac disease, so even though I don’t know you, we are proud of you, I really mean that!!! We admire the fact that you try your best not to let it control your life, that’s my motto too!!!!

  37. Becky

    I do not have Celiac’s, but hubby does. Hubby does not cook. I had to change all the recipes I had been making and perfecting for over 20 years. Yes, although hubby thanks me and is appreciative, sometimes I too want to hear I am proud of how you have adapted everything, changed where you grocery shop, how we eat and what we eat. Here is a blog post I did on some of the changes: http://bec4-beyondthepicketfence.blogspot.com/2012/10/lifestyle-change.html

  38. Cheri

    Thank you for sharing. It IS hard work eating gluten-free. I’m still learning, and it’s overwhelming.

    About once a week, our office goes out to lunch and it’s really frustrating for me. My co-workers have made comments to me like “it’s OK to “cheat” a little,” “there are a lot of dining out options, ” (there aren’t by our workplace), or (one of my favorites) “restaurants aren’t going to offer gluten-free because not that many people really need it.” Talk about feeling insignificant.

  39. Mary Ellen

    Hi Brynne,
    I’ve been reading your blog, congratulations by the way! Your blog is wonderful, you are doing a great job. I too am gluten free among many other food sensitivities. I could honestly relate to every single comment that was made on this post. Some comments made me laugh, some made me feel like crying. How many times have I gone without eating all day because I didn’t have access to the food I needed. Even as a very prepared individual, this still happens. Or you think you have eaten a safe foodโ€ฆbut it wasn’t, and you are in a situation you can’t get out of. Your stomach feels like it is full of twisting knives, you can’t concentrate on anything other than your stomach and the fact that you need to go home. But you can’t go home, because you are there on business and rode with other co-workersโ€ฆ.I could go on and on!
    More times than I would like to say, people tell me they wish they had what I have. Or they act like I am on some stupid “fad” diet. I could probably write a book on my experiences as a celiac and other food sensitivities; as could most of the people who have commented today.

    On a positive noteโ€ฆwhat does help, is when I can help others with their food issues. I have become quite a resource at work and often co-workers will ask if they can give a friend my name so I can help them. This is good. That is also how my blog got started. I was constantly copying recipes for people, so my daughter suggested I put it on a blog. I wish I had more time for my blog, but working full time and living on a large farm takes much of my time. Not to mention all the food preparation I have, just so I have food to eat and to take to work. It is for sure a time sucker! If you get a chance read my story, you would probably find it interesting. If you go to my blog, click on, About Me.

    Take care Brynne, : )

    We actually are very strong, even though sometimes confused people make us feel small.

    Mary

  40. Mary-Lou

    when I first saw all the gluten free flours etc. coming out I was very excited.. I am allergic to wheat but not rye so not really gluten intolerant… but sometimes I think much worse. All the wonderful wheat free things that used to be available have now been removed to be replaced with gluten free. I am very happy to see these things available for those that need them because I fully understand how hard it is to be on a very restricted diet and have to pass up sooo much of what is a social life…eating is just part of that! I keep hoping I can actually find a bread I can eat, a sandwich would be heaven! The only one I could use was a wheat fee rye bread that is no longer made. I spent years trying to make my own and they just don’t work. All of the gluten free recipes I have come across, have some ingredient I cannot have and haven’t had luck replacing. I cannot tolerate corn.. in fact is the worst of my allergies, do you know how many things have corn in them! lol Many other things can be added to the list…most artificial stuff, lots of fruits, vegetables, grains, meats, dairy etc. etc. sooo very hard! I feel for you, I think the worst is always having to ‘think’ about what you are/going to eat! Sometimes, I just don’t, it’s easier! I have been fighting this most of my life and it is only getting worse, adding more ‘can’t haves’ all the time. But, then I remember that there are worse things. Life is good…just a bit frustrating at times!!! Thanks for letting me know I’m not the only one who has a hard time from time to time~

  41. Brittany

    I can really appreciate this post and I’m proud of you for acknowledging it! And of course for living a gluten free lifestyle! I especially agree with “Itโ€™s all the people around me that are living regular lives. Those that try to be super accommodating make me feel guilty, and those that donโ€™t remember or care make me angry.” Sometimes it’s hard not to feel disappointed when your friends can order anything they want at a restaurant and you have like 2 options. And I always feel guilty when people have to make special accommodations for me. I really loved this post, good for you for stating your mind!
    -Brittany

  42. Pingback: Tell Me Youโ€™re Proud | mybetterbalance

  43. Katie

    Thank you so much for your vulnerability in posting this. I totally understand what you’re going through… kind of. I don’t suffer from celiac, and thankfully I have the option, but whether I have an official diagnosis or not, I know it makes me feel cruddy. So I am working hard at avoiding it, along with all that other garbage that is gross. Its hard, and rough and it sucks when people don’t care. But I’m behind you, and looks like so many others are behind you, and you are doing great at managing this. Melt downs are ok, it means you’re normal, and that this load is a big load and you’re not meant to bare it alone. So share, share away! We’re here for you.

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