When the news is difficult to hear

When the news is difficult to hear

It’s been almost a year since I started this journey with autoimmune disease. I was hoping to check in Friday on my birthday with an amazing story of restored health and awesome lab reports. Instead, this has been a hard week.

Each time I face a new hurdle on this health journey, my husband reminds me that this will be one of those defining moments I will remember when I get to that place where life is starting to feel more normal. I actually feel farther away than ever with more questions than I even had a year ago.

But I find that writing it down might at least helps me process the information and give me a reference someday when I’m trying to remember all of the key events on this journey. Although it’s kind of weird to write about my health in such a public way, I also hope it might help someone else walking a similar path. So, here goes…

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I visited my gastroenterologist on Thursday as a follow-up visit to review my routine blood tests. I have been on a strict gluten-free diet for about 10 months now, so my celiac blood panels should have returned to normal. In other words, my body should no longer be flooded with antibodies, showing that my immune system is trying to defend against the gluten in my system.

Instead, my antibodies were very high. They looked more like that of a person with celiac disease who is eating gluten on a regular basis. This means that my immune system is still working hard to destroy my intestines in its mixed-up effort to try to fight off what it thinks is a dangerous invader. My blood work also showed that I’m still low in important vitamins and minerals because of my inability to absorb nutrition from my food.

This answered some big questions for me such as why I have continued to feel sick for nearly a year, despite removing gluten from my diet. Since the beginning of the year, I’ve been on a much more highly restrictive “healing diet” that is designed to help my gut recover from the damage of celiac disease. For most of 2017, I haven’t eaten grains, dairy, soy, legumes, sugar, processed food, eggs, nuts, seeds, nightshades, chocolate, alcohol or coffee.

I don’t eat in restaurants, and 98 percent of the time, I only eat food prepared in my kitchen by me. And yet, I’m still experiencing autoimmune symptoms.

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My doctor gave me two possible explanations for why this is happening. The first one came in his office.

Most people with celiac disease need to strictly avoid ingesting gluten, which includes even trace amounts that can come through cross contamination, especially in restaurants. However, in my case, perhaps I can’t even touch bread. He instructed me to avoid even the smell of bread. If I can smell bread, it means the gluten has been aerosolized, and I could be contaminated, he explained.

In other words, no more making PB&J sandwiches in the morning for my daughter’s lunch box (even with the extreme hand-washing that I do afterward). No more mixing up birthday cakes for my kids that could release flour into the air as I operate the hand mixer. No more baking a pizza in my oven, which fills my kitchen with the smell of baking crust.

While my family has been extremely careful to help me avoid cross contamination when they eat bread, crackers or baked goods, the doctor said all six of us should eat gluten free at home because of my extreme sensitivity. Perhaps this doesn’t sound too hard to accomplish. My son and husband have already gone gluten free, so that only leaves three more who need to make a big diet change.

However, this actually stresses me out more than my own dietary needs. I regularly cook gluten-free dinners for the whole family. But eliminating all of the gluten-filled cereals and toast at breakfast and replacing all of the quick sandwiches that go in lunch boxes is going to add even more planning to my already full life.

My doctor also referred me to a celiac clinic in Chicago to get more specialized help because my sensitivity is so severe. I actually didn’t expect to even hear from him again when he sent me on my way.

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The next morning (my birthday, by the way), he gave me a call. He said he had been so interested in my condition that he did more research on it. He discovered a form of celiac disease that doesn’t improve with a gluten-free diet. It’s called refractory celiac disease, and it affects about 1 percent of people with the disease.

He asked if we could repeat my endoscopy to do some more testing and determine if I have this condition. I was amazed that he would care enough about my situation that he would take the extra time to do this research. His office called me a little later, and we set up the procedure for Monday morning!

If I do have refractory celiac disease, it could mean going on an even more extreme liquid diet to try to pinpoint everything that is causing problems for me. It also could mean adding some drugs to my treatment plan, which scares me. (I tend to do a lot of reading about immune suppressing drugs, and they don’t sound like a good long-term solution.)

At this point, I guess all of the options seem scary. It’s hard to imagine that I have such an extreme sensitivity to gluten that I need to avoid even smelling bread. Even with all of the lifestyle changes I’ve already made, the treatment options with refractory celiac disease sound extreme.

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Life with celiac disease

To wrap this up, I guess I’ll tell a story about my birthday. The ladies I work with all make a point of celebrating each other’s birthday by going out to lunch or doing something fun together. Since I can’t eat in a restaurant, I asked them if they would come to my house to eat “Emily food.”

I prepared for them an entire meal of my favorite dishes made only of the foods that I can eat (meat, veggies, fruit and healthy fat). I loved preparing this meal for them, and started getting emotional as I waited for them to arrive. For the past year, I usually feel excluded in food situations. It’s a constant exercise in self control to stay away from the growing list of foods that I can’t have.

For this one meal, I was surrounded by people who were eating like me. They had chosen to enter into my world and walk beside me. I often feel so isolated because of my inability to take part in the celebrations of life by going to restaurants to meet friends, taking my kids out to ice cream or eating birthday cake. For this one meal, I felt so included.

It made me realize how I can be better at entering into someone else’s world. Giving up my way of doing something to show compassion or support for another person’s situation can be such a remarkable way to demonstrate love. I hope that I will be more compelled to do that for someone after experiencing it myself.

You might be doing that for me right now by reading my story. If that’s the case, I want to tell you thank you! I would love it if you would leave me a comment to let me know you stopped by!

 

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