When you have Celiac Disease, you have days that are manageable, and you have days that are tough to get through. The diet restrictions alone are enough to keep you from enjoying some of the good things in life like dining out or traveling to new places. Since Julie’s diagnosis, we found that gluten free choices are limited to more than just places that advertise gluten free, but places that truly understand the contamination risks and take precautions to get the order right. There have been a few times we were either rushed or misunderstood and the order was not right, which led to Julie ‘being glutened’.
We use the term being glutened like we use ‘food poisoning’, but the physical healing time from being exposed to gluten can last for days beyond the exposure. The mental and emotional effects can last longer. It is critical that we limit the chances that Julie can be exposed to gluten by carefully researching the places that we visit, and having confidence in explaining the risks to others. With increased awareness of Celiac Disease, we are finding that people are beginning to understand how serious it is, and how careful we need to be to protect those with the disease.
Being glutened is an experience I would never wish upon anyone. The effects can be devastating. When Julie is glutened, the first symptoms to show are extreme fatigue, bloating, cramping and debiliating headaches. The fatigue is so bad, she can be stuck on the couch for days. The bloating and cramping will keep her up all night, and the headaches cause her dizziness and difficulty concentrating. That leads to insomnia and ends up throwing off her appetite, further exacerbating the problem.
After a few days, her body begins to regain energy and she’ll begin eating normally again, but the damage lasts well beyond that. Her confidence is shaken, and her thoughts circle around letting her guard down. She will blame herself for the exposure, by either not being careful enough or letting others dictate what is safe and what is not for her. Sometimes that blame lasts much longer because being glutened has led to long-lasting consequences. In a couple of instances, the dizziness has led to her falling and breaking bones which took months to heal.
While the possibility of being glutened is always a concern, we cannot live our lives in fear of it, and we cannot let Celiac Disease control our lives. It has caused us more pain than we could have ever imagined, and we’re still recovering from a lot of it. The fatigue subsides, the bloating clears, and the broken bones eventually heal, but the loss of our children is something we will live with forever. It’s a trying task, but we make every effort to avoid being glutened by having the confidence to explain our needs to others and knowing that ultimately we control what we are putting in our bodies.