5 Stages of Gluten-Free Grief

A couple of years ago I read a great blog article that really resonated with me as it discussed something that I see again and again in clinic.

I have used this concept to help people start their gluten-free life so often that I wanted to actually write about it myself. I will link to the original blog at the bottom.

The Kubler-Ross Model, also known as the 5 stages of grief, was developed by a psychiatrist working with dying patients. She concluded that people going through grief and loss go through 5 distinct stages.

Well guess what, learning that you have to make major changes to your diet, and that you can NEVER eat some of your favourite foods again (at least not as you know them) constitutes a pretty major loss, and is very often accompanied by grief.

People are unique and everyone experiences grief differently. Not everyone goes through all the stages. Some will get stuck in one stage; some will rollercoaster back and forth between the stages before they are able to move on.

So without further ado, I give you The Stages Of Gluten Free Grief :

1. Denial

  • This cannot be right. I don’t believe it.
  • The test must be wrong, or too sensitive and picking up everybody.
  • But I only have spelt – spelt is good for you!
  • But I don’t get symptoms from all gluten-containing foods, so surely I don’t have to cut them all out.
  • But I don’t have any gut problems at all, so this can’t be right.
  • Well my mother-in-law tells me that I have to eat some gluten or I won’t be able to tolerate it at all, so it can’t be right that I have to give it up completely.
  • Yes, but gluten-free is so fashionable now, they’re just telling everyone that they have to give it up. In a couple of years they’ll move onto the next thing, so there’s no point in me really giving it up completely.

2. Anger

  • This SUCKS!!
  • Everyone else can eat whatever they want, whenever they want. Why do I have to give up all those delicious foods??!! It’s not fair!!!
  • Eating completely gluten free is IMPOSSIBLE. It’s in EVERYTHING. I’m never going to be able to eat out again. I’ll just have to stay home and eat that horrible gluten-free pasta that falls apart and tastes like glue.
  • Oh My God, I’ve been sick for all these years and nobody told me it was gluten! Nobody even mentioned it to me! I’m going to go back to that doctor / those doctors and give them a piece of my mind!!!!!!

3. Bargaining

  • Well, I’ve been eating gluten this long, If I just do the 80:20 rule then I’m sure it’ll be ok. I’ll be really really good during the 80, and then the rest won’t matter.
  • My sister is getting married next month. I will have to eat ‘normal’ food for her wedding, and have at least a piece of cake. One piece of cake never hurt anyone! I will go back to being gluten free after that.
  • But our friends have gone to all the trouble of cooking dinner for us. It would be so rude not to eat the food they’ve prepared specially. I’ll just take some L-Glutamine when I get home.

4. Depression

  • My life is over. My life will never be the same again.
  • There’s nothing I can eat when we go out. I cannot face another salad while everyone else has pasta. I’m just going to stay home from now on.
  • None of my friends or family wants to deal with my food issues. I’m a social pariah.
  • I’m so sick of feeling like a ‘fussy eater’ and I hate feeling like such a pain when I have to eat at someone else’s house or in a restaurant. This is the pits.

5. Acceptance

  • Wine is gluten free – yahoo!
  • I guess this is ok. I definitely feel better. I’m so glad I’m not in so much pain any more, and I love having more energy. Plus, my skin hasn’t been this good in years!
  • I can eat before I go out, or bring my own food.
  • It’s not such a big deal to have that conversation with the waitress. It’s much better than getting sick again!!
  • I don’t remember the last time I felt this good. I love this. I’m so happy that I found this out.

In my experience there are two versions of acceptance. The first is sort of begrudging. It’s fine, the person is used to it now, and enjoys feeling better at least. They move forwards. Don’t dwell on what they feel they’ve lost, and just get on with it.

The second however is more joyful. This person fully embraces their new, healthy lifestyle, enjoys trying new foods and recipes, and actually sees their diagnosis as a blessing, as it’s allowed them to take control of their health and change their life for the better.

For people for whom gluten or other foods such as dairy, soy, eggs or sugar are causing health problems, giving up these foods is not losing anything; it’s gaining so much!

  • Freedom from health problems that have plagued them for years or even decades.
  • Feeling ‘normal’.
  • Having abundant energy, mental clarity and focus.

For many it means moving away from processed and refined foods and discovering a whole new world of delicious, vibrant foods and recipes that don’t just taste good, but they make you feel great too.

Trust me, this is much much more rewarding that eating a giant bag of… (insert favourite processed snack food here) in front of the television after the kids have gone to bed, which is the kind of eating that feels good in the moment, but makes you feel bad afterwards.

It’s even better than eating your favourite comfort food with the family at Christmas, if said comfort food makes you bloat up like a balloon or gives you a migraine.

Some people actually go straight to positive acceptance, because they are so happy to have an answer to their health problems.

For most though, they need to go through the grieving process in their own time until they come to acceptance.

If this is a member of your family or a friend, being supportive, listening to them moan or rant when they need to and just letting them process the changes at their own pace is best.

And just FYI, the nicest thing that you can do for someone after diagnosis, is make them food that is safe for them to eat. This still makes me feel super happy and loved after 10 years. The caveat is that it’s also quite scary to eat food someone else has prepared, so make sure you know exactly what the ingredients are, and research cross-contamination, so that you can reassure your friend or loved one.

If it’s you going through this transition, hang in there. Take the time you need. Be very nice to yourself, learn how to convert a couple of favourite recipes and most importantly connect with the community for ideas, inspiration and comfort.

Reach out to me if you need any help with any of these things.

Lastly, if you’ve been through gluten-free grief (or dairy-free grief or any other food grief) I would like to hear from you. Share your experience and coping strategies. How did you get through it?

You can read the original blog post from Shirley at Gluten Free Easily here.