I’m getting frustrated. Frustrated for me that I’ve come to the realization that I will never feel totally healthy again and frustrated for my fellow celiacs who are in the same boat. While I feel much better on a mostly paleo diet, I still struggle. I’ve come to accept it and it’s become the new normal.
But what I’m frustrated mostly about is the misconception of what celiac disease truly is. The focus is always on the damn food and not nearly enough on the disease itself. The media and the food companies are winning my friends and celiacs are losing. WE ARE NOT HEALING FOLKS. A recent study showed that 90% of celiacs on a gluten-free diet still have symptoms. Why is that??
I’ll be digging into this topic much deeper another day this week, but today I wanted to focus on an email I received from an extremely frustrated celiac who is desperate for help. As always, any words of support you can offer her would be so appreciated.
Dear Gluten Dude,
My celiac story is a little different. I had a biopsy confirming celiac, at least by the doctor who did the procedure and the pathology lab, but my own doctor said, “just wait and see what happens; stay on the gluten”.
Fast forward two years, and I’m in an abusive marriage and share a daughter with my new husband. I had shared custody of my two sons with my ex, so I traveled back and forth across the country to get them. Meanwhile, my current husband tired of the fact that I had two sons and wanted me to “let them go.” But what’s really bad is my youngest son became very ill from Type 1 diabetes, and nearly didn’t make it. During his time at children’s hospital, he was screened for celiac and was found to have it. I left my abusive husband permanently, even when he liquidated our accounts and took all of my money away from me. Now all my kids and I owned was an old van and some clothes.
At this point, my abuser was still threatening and harassing me pretty badly. He tried to get custody of our daughter, but the Violence Against Women and Children Act protected me, to a point. But I was still ordered to pay for plane tickets to fly back to my husband’s town 1700 miles away. Every six weeks. Without child support.
During this custody trial, my oldest son and my young daughter were showing more and more signs of illness. My oldest was also diagnosed with celiac disease. Then, my daughter was found to have thyroid disease severe enough to put the celiac testing on hold.
I am a single mother of three beautiful, but chronically ill children. We rent a two room apartment and share a kitchen with another family and I work 40 hours a week for the owners of the home as a ranch manager. I cannot work any more hours, because my other full time job is a caregiver. We go to specialists all over the state every week. Our old van leaks transmission fluid, so I’m limping it along as much as I can. We have very little to live on.
There is no money for new Nike’s, or a Nook. We can barely put food on the table, as expensive as gluten free food is.
I have to take extreme measures trying to make sure my kids don’t get glutened. If we’re lucky we can afford some school clothes from the goodwill. I’m up at all hours of the night checking blood sugars, giving insulin injections. I’m tired.
Where is the understanding? The courts don’t care at all. My own attorney didn’t care. My now ex-husband doesn’t care. He doesn’t even care about his own daughter’s health problems, refusing to give her the thyroid medication she needs. He makes very good money, just bought a new SUV and lives in a 3500sq ft home.
I tell myself, at least I have my children, and we’re safe. But sometimes I just get tired. Sometimes I just wish for a break. I find myself fantasizing about stupid things. Like maybe if I played the lottery I would win enough money to pay for the plane tickets for the next year. Or maybe someone will help me fix my van. Day by day, we make it through.
People don’t understand how devastating celiac disease is. Then we have Type 1 diabetes and Thyroid disease to worry about as well. I find myself trying to conceal these issues from most people just to avoid stupid questions like, “You can eat a little of this right?” or, “Your son ate too much sugar and he got diabetes? That’s so sad…couldn’t you have seen the signs?”
If you want to blame me for something, blame me for having super crappy genetics. I’m so sorry for that; every day, I wish I could take it back, give them new ones.
What can I do to make it? How can I ever climb out of this dark hole we are in?