Symptoms and Solace

My last post was a memorial to Natalie Giorgi, the teen who tragically died from eating a Rice Krispie treat that she had no reason to suspect was laced with peanut butter.

As pervasive as the dietary restrictions facing me and my daughter with celiac disease, we are thankful that the symptoms are “only” as severe as stomach upset, pain, skin conditions, headaches, fatigue (sometimes extreme exhaustion), acid reflux and major bathroom time (to use a euphemism). (For a full list of common symptoms, see the Mayo Clinic site.) There are others which are not readily visible, such as loss of bone density and reduced spleen function, but thankfully anaphylaxis and cardiac arrest are not on the list.

Then again, gluten is in almost every single food product imaginable, so the chance of getting sick or having another symptom, reaction or side effect is much higher. Even some ice cream – if it is made at a restaurant, for example – can contain gluten. Gluten is the glue that sticks food together. If a celiac does not adhere to a strict gluten free diet, the complications of untreated celiac disease include malnutrition (due to malabsorption), osteoporosis, gastrointestinal cancer, depression, schizophrenia and others. So yes, eating gluten can lead to death or other serious conditions, but only over time.

My own gluten monitor is set to high. The tiniest bit of gluten sets off bells in my mind and body, and I can usually tell immediately that I have a brain fog and/or an inflated tummy. I joke about being the “princess and the pea” from the fairy tale or pregnant with a gluten child (because my tummy expands to a stage as if I am five months along.) Other than that, my most common symptom is to fall into a deep sleep for 2-3 hours. This isn’t a cat nap, it’s like a full blown mini coma. If I am awoken, I am dizzy and disoriented. This symptom usually manifests itself within 1/2 hour to 1 hour of eating a food with hidden gluten. (I never cheat on the diet, so I have no idea what would happen if I had a bite of “real” pasta, bread, etc.) The effects of being glutenized and feeling out of sorts can last for up to 72 hours, although after that nap I have always been able to function as a normal human being again.

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Since I have a professional career as a lawyer, I have another reason to be extra careful about my diet. I can’t simply take a nap when I have a conference call or complex legal work to complete for a client. Fortunately, I have an overwhelming will to be healthy, much more than the will to try a new food or restaurant. I do take educated chances once in a while, like trying a new restaurant or food that other celiacs have recommended, but only if I know that the world would not end if I was out of commission for a while.

I have gotten sick at restaurants that were “safe” for others. It may be that I had a different waiter or chef the day that I went, or it was busier and less attention was paid to avoiding cross-contamination. Some have said that it’s like playing roulette to have lunch with me, other than at a few places that are very well informed about separate food preparation. Is she going to have a reaction?

When I sit down and finally tell this long story to people who have not had any interaction with someone who has celiac disease or another serious condition, I usually get long stares or sympathetic eyes. What a horrible way to live! My own grandmother has said that to me on occasion, and I appreciate her honesty even if it was hard to hear. I can say that yes, some days it is horrible. Some days the fear factor is high, and the anxiety is tough to beat. Most days, however, I am thankful that if I have something “wrong” with me, I can do something to take care of myself. Also, I can help others. My compassion has grown threefold.

We all have an open or hidden secret that makes life difficult. Each one of us. And yet we go on. Once again, I offer these words as solace to others, that we may all find peace rather than struggle. We have nothing “wrong” with us. We are made to be who we are. Some of us, the stronger ones, are given heavier packs to carry. Every single day.

About Glutenfreelandia

Glutenfreelandia - It's where I live. Do you live there too? This blog is devoted to the joy, peace, health and struggle of living a gluten free life. For celiacs, gluten intolerants and those who love them. Glutenfreelandia - es donde vivo yo. Y tú? Este blog está dedicada a la alegría, la paz, la salud y la lucha de vivir una vida libre de gluten. Para los celíacos, intolerantes al gluten y los que los aman.
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4 Responses to Symptoms and Solace

  1. My daughter (now 5) has had celiac since age 3 and I go back and forth between gratitude that it’s something that can be managed solely by diet, to sadness (for her) that she will have to deal with this disease and all the social ramifications for the rest of her life. But like you said, we all have something to deal with, a burden to carry and this is hers, and mine, as her mom.
    -Dana

  2. I am also sad that my daughter (now six, diagnosed at five) will have to deal with this for the rest of her life, especially as she moves into her teen years. Fortunately she is finding a good group of friends who are very supportive and whom I hope will continue to be as years pass. The world seems to be getting easier, with even colleges offering gluten free options. I think this new generation will be the “change generation” for the gluten free (and larger) world.

    • Kathi Ahlberg says:

      My friend’s grandchild was just dx. w/ celiac disease and your blog is a huge help for not only my friend but for us all. Thank you

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