Special Diet Grief

Most people have to go through a grieving process when they lose something–even food. Sometimes it helps to simply recognize the grief for what it is.  Allowing yourself to grieve helps you let go and move on.

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I grieved when I was first diagnosed with celiac disease.  In 2000, gluten-free was not a buzz term and people had never heard of celiac disease.  More than once I got the response, “That’s weird.”

At social events there was no one else eating gluten-free.  I don’t think I even knew anyone with a food allergy.  I had to relearn cooking and baking and only had the help of a few library books and an online listserve.

I couldn’t go buy a loaf of bread.  Well, I could, but it wouldn’t be good.  I didn’t even like most of the pastas available at the time.

Going gluten-free was hard.  Sure, I was feeling so much better, and grateful for an answer that didn’t require drugs, but it was still very difficult.  I grieved.

hooded-personI grieved the loss of food I loved, the loss of convenience, and the loss of social eating as I used to know it.  It wasn’t long and drawn out.  It wasn’t particularly intense, but it was a grieving process.

Soon I was excited about how much better I was feeling and all the new foods I was learning to make.  I also enjoyed the challenge of working with new ingredients and coming up with new recipes that everyone in the family would enjoy.

That grieving experience taught me a lesson—that grief is not reserved only for times when people die.  We grieve when we lose something that was important to us and that we cared about.

Maybe you let go of a dream in order to have children, or found that your dream was not all you expected from it.  It’s amazing how helpful it can be to say, “I’m grieving over that,” and have a good cry or two or three about it.

Today, the gluten-free diet is not as difficult as it was when I first went gluten free, but it’s still a hard adjustment.  It still requires letting go. It is still a loss for many people.  Changing your lifestyle and eating habits for any special diet can lead to a need to grieve.

Have you experienced special diet grief?

My friend Shirley has written a post about Grieving Gluten which covers the five stages of grief plus one more.  It’s worth reading.

More posts about Gluten-Free Living

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  1. says

    I recall my father saying that his brother in law nearly died in hospital because he was so sick. A new young doctor came by to see him and asked if anyone had checked for celiac disease. Saved my Uncle’s life he did.

    Going gluten free is on my to-do list. I don’t suffer too much with a few changes to my diet recently. If I were able to cook myself it would be so much easier. But due to my health the hubby does all the cooking and grocery shopping. He does so very much already, I hardly want to rock the boat and make him learn how to cook gluten-free. Just not yet!

    I intend to get us to vegetarian and gluten free eventually. When I was eating vegetarian I felt the best in my entire life. Alas, I just don’t have that kind of energy or stamina to cook and prep anymore.

    • says

      Wow, good thing that doctor came by and saved your uncle! My uncle was diagnosed while in the military in the 1960’s. It was unusual for an adult to be diagnosed back then.

      I have heard that some people with fibromyalgia improve on a gluten-free diet, but I understand not wanting to ask more of your husband. Cooking gf isn’t that hard once you get over the initial learning curve, because there are so many naturally gf foods. It’s when you get into breads and baked goods that it becomes more difficult.

  2. says

    I don’t know that I went through grief as much when I gave up dairy, soy and wheat because I felt so much better after they were out of my system. I think I miss some things more now due to the lack of convenience. I miss being able to go out to eat and not worry about what I’m going to order. If I’m home, I can come up with a perfect alternative, but convenience on the road or for a quick bite out does not exist anymore.

    • says

      Seeing your comment made me think about my switch to dairy free which came years after being gluten free. I didn’t grieve dairy, though I do miss it at times. And eating out dairy free has been an adjustment. You’re right, it makes being on the road much more difficult.

  3. Kathleen Benner says

    I think the hardest part for me is going to eat at the home of other people. At least at a restaurant, I am usually safe with salads and can easily adapt an entree to make it just the way I like/need it. But, when we eat at the home of other people, I still feel ackward taking my own food (esp. because I tested negative for celiac disease so I consider myself to be “gluten-intolerant”. Some of my family still doesn’t think my GF is ‘necessary’.) However, I have learned that not even all of my family has come to terms with me eating gluten-free so I can’t count on them for having options that are safe for me. In the end, though, I have never felt this good in my entire life so the ackwardness is totally worth it!!

    • says

      I agree. Eating in other people’s homes is hard, even when they do understand. Generally, restaurants are more aware of cross contamination than the average cook is. It’s not uncommon for me to get sick after eating at someone’s home, usually because they had done baking recently.

      • Marcia Kittler says

        Linda, Kathleen, so what do you do when friends invite you over to eat? My friend promised to make everything gluten free, and she carefully reviewed the entire menu and all ingredients with me. And you know what’s coming. I still got sick.

        Linda, I definitely grieved the big impact on my life. I’m eating gluten and dairy free but I’m having inconsistent results, so I’m experimenting with other foods now too. Nothing is consistent. So I can’t say that giving up gluten made me feel so wonderful that it’s worth it. :/

        • says

          I would say it’s gotten easier for me to eat at a friends house simply because I’m not as sensitive as I once was. I also usually take enzymes with the meal and that helps if there is a little cross contamination. If it’s someone whose kitchen I know will be too contaminated from a lot of baking, we just don’t do a meal there. I would invite them here for a meal instead.

          I’m sorry you are not feeling a lot better. There can certainly be other food issues. I hope you get it figured out.

          • Edonna says

            Evidently I need to learn more about cross-contamination. I spoke with the chef about my dietary needs when I recently attended an education conference. The salad and vegetables came from a buffet and the steak was brought to me separately. “too contaminated from a lot of baking”? Can you point me in the direction of resources to learn more? Thank you. And when it was pointed out that I was suffering from gluten-grief, thanks to Shirley-GFE of course, I accepted that grief would be part of my journey. That alone helped.

          • says

            The contamination could have come from multiple sources, but I don’t usually eat from salad bars. There are usually gluten containing foods like crackers, breads, and croutons nearby that can contaminate the gluten-free items on the bar. You can always ask them to make you a fresh salad. My page on Gluten-Free Diet Information contains my informational posts. This series on Still Getting Gluten addresses cross contamination.

  4. says

    I definitely grieved not having to be such a big food detective. I was already checking labels for calories and other nutritional info. and I’d read the ingredients to make sure there weren’t any major chemicals in there. But now I have to call companies and ask about manufacturing practices and sometimes it just feels like a giant pain! I do grieve for the easier side of life, although I do like feeling better.

    • says

      Yes, it can seem like a lot of work, and it is! And while popping a pill would be easier, we’re glad that we don’t have to put drugs in our bodies. It’s a good thing the gf diet does make us feel better, otherwise many people wouldn’t stick to it.

  5. Liz W. says

    I grieve for myself, my kids, and my pocket book! And I am pissed at big corporations that put out nutritional info to only have a franchise owner or staff cross contaminate food.
    My kids are GF and mostly CF, with exception to occassional goat milk products.
    We have to bring our own snacks to birthday parties, and road trips are a real pain in the butt. Going to a taco bell and getting an item they say is GF, and asking for no cheese…then seeing my daughter’s lips swell…scares the crap out of me…I am afraid that the gluten allergy could lead to the grief of losing one of my kids.
    I have worked in restaurants too. Hate to say…but the attitude of some owners is way too cavalier.
    I don’t mind the cooking…but honestly, having FMS, recovering from CFS…the clean up kills me. So my arms hurt, and I can not reserve the energy for other things I’d like to do…such as I end up neglecting to walk my dog because holding the leash is just too much for me most days. Or clothes are separated but not folded.
    I have to switch to raw snacking and paper plates periodically to get by. But it is worth going from CFS to Fibro as a step up…and to not have to pick up the kids benadryl or epi-pens. Socializing is honestly not fun so much. I have to provide the food, or make sure someone REALLY understands. I can say in one instant I can not eat bread due to allergy to wheat (makes it simpler) and the next instant I am being offered crackers or flatbread or a dessert obviously containing wheat (at least to me).
    It is hard on me, so I do not know if my kids have it easier just being younger doing this, or harder. A bit of both I suppose I want us all to enjoy life and not be imposed to enjoy life quarantined. Grieve…hell yes we do.
    But there is A LOT more edible product out there when I first started in the 90s. And if you can not afford to buy…well, bonus…you lose weight from the reduction in carbs! I lost 40 lbs. I just buy when on sale and as treats or for things to take to birthday parties. $6-$9 for a lil pizza compared to 1.39-2.50 for the wheat and real cheese equivalent :(
    Single mom…3 kids…disabled…it is tough.

    • says

      Liz, you’re right. It is tough. It sounds like you are doing the best you can for you and your kids. I know one day they will really appreciate all you did for them. I can’t imagine dealing with all your challenges. I’d say raw snacking and paper plates sounds like a good way to go! Keep up the good work. Hopefully you will see more health improvements to come.

  6. Sarah says

    I was just diagnosed with celiac a couple weeks ago, and I certainly grieved for a few days. But I felt badly for doing so, largely in part because there was no shortage of, “at least it’s this and not something worse” or “oh, that wouldn’t be too hard, I hardly eat gluten as it is,” or “at least now you know what’s wrong,” etc.

    But I then figured out pretty quickly that it was my prerogative to have those feelings. It wasn’t my choice to go GF, which is a big deal. And it wasn’t these (well-meaning, I know) people’s norms, traditions, families, social lives, pocketbooks and more being affected, it was mine. Once I embraced that it was my experience, not everyone else’s, that part of the process ended for me, and I moved on to the next step.

    So thanks very much for the timely post! :)

    • says

      Sarah, I’m glad you figured that out for yourself. All the things other people say are true, but that doesn’t mean we don’t grieve the loss we experience.

  7. says

    I grieved at first. I had so many childhood memories of baking with my mom and bringing treats to friends and neighbors. I had always looked forward to doing that with my own children. Then suddenly I couldn’t do it anymore. I can’t afford to bake gluten-free sugar cookies for my neighbors for Christmas, and I didn’t want the gluten all over my kitchen. Once in awhile I would try to make them just for my kids but I would watch batch after batch melt into a big mess on the cookie sheet (dairy and soy free too–not sure what made them melt).

    Then for awhile things got better. Boxed mixes came out. Fabulous blogs started cropping up, and we found some things that worked for us.

    But I think I’m going through a grieving process again. I have three children now, all gluten and egg intolerant. Two milk intolerant. And now my baby can’t even eat things like grapes and cranberries. I could handle two, but with this third and the extra complications it is enough to bring me back to the days of just wanting to pretend it doesn’t exist. (Did any of you ever do that?) But reality says I cannot pretend. There is no denying the bad diapers, the rashes, the tummy aches. I’m sure I’ll find a system that works just like I did before, but in the meantime, maybe I’ll just let myself cry it out a little. :)

    • says

      Michelle, I’m sorry it has gotten harder for you with the baby. It’s tough having so many foods to avoid. I’m sure you will find a system. It’s always the initial adjustment period that is the hardest. Keep up the good work, and take time to have a good cry.

  8. Carol says

    I was diagnosed with celiac this past July. I can really relate to everything you said about feeling better and getting excited at making new foods and cooking gluten free for my family. I won’t say it was easy, but I embraced the changes because I knew my body was very sick (malnourished, anemic, etc) and I wanted to get better. I was undiagnosed for a long time. I am facing a new challenge that surely has me feeling diet grief. I must now give up sugar and many other things due to excessive candida and follow the candida diet. I am not afraid of a challenge, but, wow, this is a biggie. I will read Shirley’s post on grieving gluten. Thanks for your thoughts and honesty about your struggle.

    • says

      Hopefully the candida diet will not be strict forever. I’ve never had to do it, but I’m guessing that once you have beat the candida you can eat some sugar and other foods again. It sounds like you’re at the beginning of that one. I hope you find it easier as you get used to it and that the improvement in health will make it worth while.

  9. says

    Excellent post and discussion, Linda! Thanks so much for sharing my Grieving Gluten post, too. It’s important to acknowledge these feelings as you’ve shared, to let those tears fall, to support each other, to come up with new paths, to see that there may be much happier/healthier days ahead, etc.

    Off to share on FB … thanks, dear!

    • says

      Thank you, Shirley. I know you have helped many people in this area. I got a number of comments on Facebook too. While a couple of people said they didn’t grieve at all, most people did/still do grieve the loss of gluten. It’s an important topic to bring up. Thanks for sharing.

  10. Stari Benedict says

    This was a good and encouraging article and so was the one linked. There IS a big difference between a true Celiac and someone who needs to eat GF because of sensitivity, allergy or intolerance, yet the need to avoid gluten is just as real. Folks are not supportive when they don’t understand, or don’t want to face that something they enjoy might not be good for them. The cross-contamination is a factor for true Celiacs and maybe others for sure. A true Celiac can get sick just from gluten residue left on a cooking utensil or container that has been thoroughly washed.

    It is very hard to find conventional medical practitioners who recognize and test for this, and folks often (like me) have to seek alternative providers as a way to find out how to improve their health. It IS so true (I know this as a nurse and as a patient) that many other health issues can be improved going on not just a GF diet, but maybe even a totally grain free diet that focuses on real, whole foods (think the perimeter for the grocery store) and grass-fed meats, organic vegetables, etc. I have lost weight and regained health from eating this way.

  11. Dineen says

    I’ve gone through varying grieving processes related to illnesses and other losses, do the idea is not unfamiliar. I fought the idea of giving up gluten to see if it would improve apparent auto-immune issues — denial stage, I suppose. I finally took to gluten-free earlier this year the “easy way” by choosing Paleo eating plans and so far I haven’t grieved the loss of a particular food, so much as the lack of conveniences I once turned to when cooking. Cooking whole foods from scratch is a lot more effort than grabbing a box of pasta and sauce. So far, improvements seem to be outweighing the inconveniences, but stopping to honor the grief is still important.

    • says

      Yes, that lack of convenience can certainly be something people grieve. There are a few gluten free convenience foods I rely on, such as the pasta and sauce you mentioned. In the summer when I have fresh tomatoes from my garden, I make pasta sauce from scratch, but the rest of the time I buy a gf brand such as Classico. I also really enjoy Tinkyada pasta. That’s one convenience meal I can fall back on, so I feel for you not having that option. I’m glad you are seeing improvement–that makes all the difference. Keep it up!

  12. GF in Ontario says

    My first response when I was told I had tested positive was denial. “Silly people, I’ve eaten wheat/gluten all my life – thats not the problem!” However, the sicker I got, I finally just gave up the denial and went GF. Guess they were right after all – I am allergic! I still grieve sometimes, even though its now been a year. When I try to bake something GF and it bombs, the $$ GF eating/baking costs, the lack of products available in Ontario compared to the States, not being able to eat out more for fear and lack of trust, my favourite bakery being off limits, road trips can’t be spontaneous, sigh. I still feel sorry for myself and think “its not fair’. However, the flip side is that I am healthy and don’t feel sick all the time anymore, I have discovered foods/flours/recipes that I really enjoy and are far healthier anyway, I’m learning to enjoy baking and cooking again and did I mention I’m not sick anymore! Thats the ultimate pay-off. It will continue to get easier with time, and when others finally start to recognize that this is just as serious as any other allergy/intolerance, things and products will improve.
    Someone in another post stated their anger over corporations that are gouging us for GF products and I agree. Why are my GF oats twice the cost of regular? Its because they can get away with it. Luckily in my little town we an independent baking supply shop. The first time I went in looking for sorghum flour the owner looked at me like I had an extra head. After explaining to her and having a grand conversation, she told me she would get me some. Now she carries an entire section of GF flours/starches/oats/chocolate etc and she does not overcharge. Turns out I’m not the only GF individual here either! maybe your town has something and someone similar…..

    • says

      Your “Silly people…” sentence is one I’ve heard before, usually from a friend or family member who I make a suggestion to that they get tested for celiac. I’m glad you’re gf now and feeling better. You’re right, it’s not fair. That’s why it helps me to keep in mind that it could be worse. I don’t know if delivery is a problem with being in Ontario, but if you can’t find something at your local baking supply shop, try looking online. Some of the best prices are found there. Amazon among other stores carries a wide selection. Thanks for taking time to comment on this.

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