My post for “S” day was reserved for no other than my sweet friend, Shirley Braden. Shirley has an excellent blog, Gluten Free Easily – gfe, which you all MUST check out! I was SO thrilled to meet Shirley when she was in Chicago recently after getting to know her online. I was able to join her not only at the Gluten-Free and Allergen-Free Expo but also at the Wildfire dinner with Rudi’s Gluten-Free Bakery. Shirley is so down to earth and I love that her recipes are so easy to put together. How awesome is it to go gluten-free and have it be so easy to do? She also has very informative posts on her blog like the one you are about to read. With distinct pleasure, I now bring you Shirley Braden…..

Grieving Gluten–The Five Stages of Loss of Gluten

If you’re gluten free, did you experience The Five Stages of Loss of Gluten after your diagnosis? Many people admit they have gone through these stages. As a celiac/gluten intolerance support group leader, I see my members go through these stages. And yes, I experienced them to some degree myself.

Dr. Elisabeth Kübler-Ross, a psychiatrist, shared her Kübler-Ross Model, commonly known as the The Five Stages Of Grief, in her book, On Death and Dying. She developed this model after working with more than 500 dying patients. Kübler-Ross concluded that folks coping with grief and loss go through five distinct stages. It’s important to note that she stated that not every individual who experiences such loss will go through all five stages or even go through in the same order if they do. Individuals are unique and so are their responses to loss. Kübler-Ross concluded that some individuals may simply get stuck in a stage. She also said that individuals could go back and forth between stages, experiencing a “roller coaster” effect, before they completely worked through all the stages and “move on.” Continue reading →

Over time, the stages have been applied to other areas of life besides grief due to loss of a loved one … loss of a limb, loss of a job, or any other major life disappointment or trauma. These stages have even been applied in a humorous fashion to things like a bad restaurant experience (warning: some foul language). In my experience, these stages really apply to many life challenges. Let’s talk about how they apply to a diagnosis of celiac/gluten intolerance/non-celiac gluten sensitivity and the loss of gluten, an ingredient that is, in fact, a huge part of the Standard American Diet.

1. Denial:

“No, this is not the right diagnosis. Who ever heard of gluten anyway? Isn’t that what those stars give up when they are trying to lose 20 pounds? I have to give up wheat, rye, barley, and oats? But I eat McCann’s oats … they’re so healthy for you, and now they say they’re “contaminated”! Contaminated? Who uses that word? Bring out the white HAZMAT suits. Geez. Gluten simply cannot be the cause of my issues. This diagnosis is wrong.”

“I’ve had no medical problems at all other than my skin issues or bathroom problems, but everyone in my family has those. I can control them with my prescriptions. I think I’ll go to another doctor.”

“I’ve had anemia (or insert other symptoms/conditions, like osteoporosis, depression, and more) for years; it runs in my family.”

“How can taking gluten out of my diet fix these issues? It just doesn’t make sense. I’ve never had a food allergy in my life.”

“I didn’t react to foods like pizza and goodies when I was pregnant. If I am gluten intolerant, how is that possible? I don’t think this doctor is right. The test results must be wrong.

2. Anger:

“Pretty much everyone else I know can eat whatever they want. Why should I have to give up pizza, beer, sandwiches, and cookies?”

“This is a screwed up diagnosis.”

“Patti says it could be worse. She says that I could have cancer instead. At least my condition is treatable by diet, she says. Yeah, right. That’s easy for her to say. She can still eat whatever she wants.”

“Eating gluten free is impossible unless one just stays home and eats crappy packaged gluten-free food all the time!”

“I’ve been living with a diagnosis of IBS for 20 years and all along it’s been gluten! Not once was gluten suggested as the cause of my problems. I was even referred to a psychiatrist. That doctor really needs to know she was wrong!”

3. Bargaining:

“I’ve been eating gluten this long. I’ll just eat whatever I want over the weekend and start on Monday.”

“My granddaughter’s wedding is next month. It would be wrong for me not to enjoy that cake with the rest of the family. A piece of cake can’t kill me. I’ll go back to eating gluten free after Jill’s wedding.”

“I’ll just have a tiny bite of Mary’s Tiramisu this one time when we all go out to dinner at Angelo’s, and then I’ll be 100% gluten free from that point on.”

4. Depression:

“There’s nothing I can eat if I go out. I’ll just stay home. This life SUCKS.”

“This is worse than anything I could have imagined. My life will never be the same again.”

“I have now become a social outcast. None of my friends, or even my family, want to deal with my food issues.”

Kubler-Ross says this is the time that the person understands that the situation is real; it’s not going to change. She states that the individual gets very quiet and disconnects from others. The tendency is for their loved ones to try to cheer them up, but individuals in this stage must left alone. If they come to you, you can be supportive and hopeful, but otherwise, let them grieve.

5. Acceptance:

“I’m really starting to feel much better. I actually think that my doctor got it right this time!”

“Okay, this is going to be okay. I can still eat steak and lobster when we go out for my birthday every year.”

“Barbara made some flourless peanut butter cookies for me that tasted great. She said they were so easy. I can make those for myself any time.”

“Wine is gluten free!”

“This list of things I can eat is pretty amazing actually.”

“I can still go on the beach trip with the girls. I’ll bring some of my own food and help them choose meals that are naturally gluten free. I can even be the grill chef to make sure my food is kept gluten free.”

This is the stage where Kubler-Ross says the person comes to terms with the loss. They can “move on.”

As far as my own experience with finding out about gluten, I only experienced the Denial in the sense that I didn’t get better immediately by going gluten free. It was only when I took other foods out of my diet that I began to improve. Still it took time. So my Denial was more in the sense of questioning if the total answer had been found for me. My Anger was real I suppose, but it felt more like being overwhelmed and it didn’t last long, although I did feel anger towards all the doctors who had treated me, taken out organs, etc. and had not correctly identified the source of my problem. Honestly, anger at lack of diagnosis for so many still spurs me on today. I really, really wanted to feel better and knowing there was an answer to my health problems was actually a huge relief for me. I think I largely skipped Bargaining because I had a transition period. My doctor advised me to eat anything I wanted with gluten in it until I took the gluten sensitivity test and then No Gluten. Period. I squeezed a lot of gluten into what turned out to be 5 days. Then I never knowingly ate gluten again. It’s not that I’m a saint, but again, after a lifetime of medical issues, I wanted to get well as soon as possible. Ironically, another doctor told me that my gluten detoxification was probably far worse because of all the gluten I ate those 5 days, but I do think that period allowed me to skip the Bargaining phase and for that I am grateful. I did experience some Depression. I had to come to terms that this was going to be my life and that favorite gluten-full recipes would not be made again. I was a big baker and my attempts at early gluten-free baking were not successful. I also liked to entertain so I was definitely down until I figured out my gfe approach. Once I focused on real food and meals that were naturally gluten free, started making flourless and crustless recipes (the latter with a very simple gluten-free flour mix), and used few gluten-free specialty items, living gluten free became both “doable” and enjoyable. That’s when I really experienced Acceptance!

Final note: Many of us know that the harder we fight something, often the more difficult it becomes. I and others often get very frustrated by the bombardment from the media on how hard the gluten-free diet is. It’s as if the world is stuck on Stages 2 and 4. And to make matters worse, “the world” (the equivalent ubiquitous “they,” if you will) isn’t even eating gluten free, so what do they know? If you say something long enough, people believe it so many gluten-free folks join in on the chorus of how hard living gluten free is. Folks fixate on this thinking—still the Depression stage in my opinion—so much that they can’t move on to focusing on all the fabulous foods one can eat if gluten free and the final stage of Acceptance. That ongoing negative focus by the media is the main driver behind Diane Eblin’s (The W.H.O.L.E. Gang) 30 Days to Easy Gluten-Free Living—an event she is hosting and participating in with 30 other gluten-free bloggers, including me. You can see the complete listing of daily posts so you can check out previous posts and follow along to the end of this month. You can also read my post on Your Pantry is the Key to Living GFE. Of course, Andrea’s own A to Z series that this post is a part of is a terrific one for handling the various stages, too. Some of my favorite posts in the series that relate to The Five Stages of Loss of Gluten are: “H” for Heidi Kelly (Adventures of a Gluten-Free Mom), who tells her family’s personal story and readily admits all the stages she’s gone through here, and “O” is not for “Oh, No” It’s for Opportunity by Heather of Gluten-Free Cat. If you are stuck in one of the earlier phases of your loss of gluten, reach out to the gluten-free community via blogs, Facebook, Twitter, gluten-free forums, your local support groups, and other local and national gluten-free events. The support is there and it’s incredible. Take that first step so you can reach that final stage and flourish gluten free!Tweet