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5 Stages of Celiac

5 Stages of Celiac

Elisabeth Kubler-Ross created the five stages of grief in 1969 to help those facing the end of life or death of a loved one. The end of a gluten-filled life can indeed feel like the death of a loved one, so I’ve created the 5 Stages of Celiac to help navigate such a profound loss.


The Good Ol’ Days (Pre-Symptomatic)

Also known as “normal life,” these are the carefree days of croissants, pasta, and beer. The American diet favors this stage with seemingly limitless carbs. You may care about calories and have some consciousness about the ingredients that go into your food, but you have no clue about this silly new health fad called “gluten-free”. This will be the stage you remember with fondness as you gaze longingly at the maple bars at Top Pot someday.


I Don’t Feel So Good (Symptomatic – Seeking Diagnosis)

Costco sized containers of Tums. Heat pads on your tummy. A debilitating sensation like pencils stabbing into your lower belly. Sound familiar? The hallmark of this stage is feeling like crap, literally. We all have our own tales of woe for this stage but they typically lead to a whole lotta tests, doctors’ appointments, and medical bills. Celiac disease is an issue of malabsorption, leading to complications such as nutritional deficiency, low vitamins B and D, iron, calcium, eczema, and even infertility. Poor body chemistry can easily bring on symptoms that mirror those of depression; feeling sluggish, muscle pain, exhaustion, foggy thinking, irritability, lack of energy. Not to mention the fear that comes with the amount of physical discomfort you may be experiencing and the uncertainty of what is causing you so much pain.


At Least I’m Not Dying (Newly Diagnosed)

There is nothing quite like the feeling of a doctor handing you lab reports while declaring “Your celiac sprue results are in and you’ve tested positive. I’d like you to schedule an upper intestinal biopsy”. What the what?! Waves of relief crash over you that your appendix didn’t burst or you have some stomach-eating bug…but then hold on… No more gluten?! This is an intense time for you and your family to have received news that you are A) going to live and B) have to change your entire lifestyle. Expect a roller coaster of emotions followed by a potentially longer circling of mourning, depression, and anger.


Welcome to the Club (Identification)

You’ve got every gluten free recipe Pinterest has published on your board. You stalk the isles of PCC for the latest GF packaged food and read the labels of everything twice to make sure there is no maltodextrin or natural flavors lurking in the shadows. Blogs, forums, books, magazines – there’s information out there and you are hungry for it! This is about the time you should be feeling relief from any biological imbalances caused by the intestinal damage from gluten as well as relief from mourning the loss of your wheat-filled glory days. This stage tends to shift out of depression and into anxiety. It’s hard to trust restaurants to not poison us. Parties no longer feel safe when you see the buffet so you have to bring snacks or risk starving. It’s enough to induce a panic attack just looking at grocery stores and second-guessing yourself for the mistake you made last week (and promptly felt the repercussions of cheating juuust once). This is, in my opinion, the stage that requires concerted effort to not let emotional struggles weigh you down because anxiety, disordered eating, isolation, obsessive-compulsive behavior, and stress may rear their ugly heads.


Gluten-Free Goddess/Gods (Ownership)

If I hear one more article on gluten-free diet for weight loss one more time….. GF has lost its excitement and thank God! Eating properly is your middle name. You know the GF websites to check medications and Halloween candy like the back of your hand. Parties are easy because you know what foods have even the potential of being unsafe and who in your support system knows how to actually cook GF. (Hell, you even use an acronym for gluten-free.) Essentially, you’re a celiac pro and any emotional distress at this point is likely not due to managing celiac disease but should be addressed with the help of a psychotherapist or primary care physician.


So, what’s the point? The long and winding road of celiac disease is complicated and absolutely takes an emotional toll. All is not lost; there are folks like myself who are trained and waiting to help you cope with the emotional struggles that come with such a huge change. Counseling can help alleviate feelings of anxiety and depression over your new lifestyle, as well as help coach your support system in how to best care for you. You’re not alone in this journey and I hope someday you don’t think I’m crazy when I say it is possible to love your gluten-free life. I certainly do.


Some feelings are normal and to be expected, however if you begin harming yourself/others or have thoughts of suicide, please reach out immediately to someone including the crisis hotline (866-4-CRISIS), any local emergency room, or a trusted mental health professional.


Christina Barrows, M.S., LMFTA

Celiac (est. 2010) and Psychotherapist

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