Thursday, July 3, 2014

Celiac Disease: Diagnosis...Accepting What Is

This is the second post in my series about celiac disease.

I remember when my oldest son was first diagnosed with celiac disease. It was simultaneously a relieving and sad day for our family. My husband and I felt major relief because we finally had concrete evidence that, yes, our son had celiac disease, and, yes, there is absolutely a way to treat it—through not ingesting gluten. Yet, we felt sad in that same moment because we knew that a diagnosis of celiac disease meant our our son's life would change forever.

*Side note: Over the course of three years, I asked two pediatricians to test my oldest son for celiac disease. Unfortunately, both pediatricians totally blew me off. I'm guessing they thought I was just a hypochondriac mom who had read too many things online. What they didn't know about me is that I have always been fascinated with all-things medical. I've read and studied about the human body for as long as I can remember. Thus, I wish I could have helped them understand that there is no way I would want my child to have any ailment I had researched! But that's neither here, nor there. They were convinced my son was fine and wouldn't test him. A year later, after doing even more research, I strongly insisted that our third pediatrician test my son. When he realized I wasn't leaving his office until my son was tested, he did a phone consultation right then and there with a pediatric gastroenterologist. Thankfully, she (pediatric gastroenterologist) authorized the test and the rest is history. All three pediatricians practiced in different states. Side note concluded.* ;)

Fast forward five months to when our daughter was also diagnosed with celiac disease. That was a major shock to us, as I truly didn't think she had it. She definitely did not exhibit the same symptoms as our older son. Although, while researching further after my daughter was diagnosed, I found symptoms she had that we didn't know could be attributed to celiac disease. In the end, it all made sense, but I was still in semi-denial that she tested positive.

While I dearly wish neither one of my children had ever been diagnosed with celiac disease, I'm so grateful they have each other to endure this trial with. They are a comfort and strength to each other.

The rest of my family (my youngest son, my husband, and I) don't have celiac disease, and for that we are beyond grateful.

*So...if you (or someone you love) have (has) recently been diagnosed with celiac disease, here are some of my thoughts:
  • While celiac disease is a hard diagnosis to receive—and you'll probably cry about it at some point (or many points) in your journey—please know that it is an absolutely doable/livable disease. Sure, eating gluten-free without cross-contact is hard to do, but it can be done, and the health benefits completely outweigh the inconvenience.
  • You'll spend a lot of time researching foods, ingredient labels, and manufacturing policies. Don't feel badly about this new time filler because in order to keep yourself healthy, researching must become a part of your life. *In a future post, I'll share the resources that have helped us the most.
  • You might feel frustrated while establishing what foods you can eat. Give yourself time to grieve your favorite foods you can't eat anymore. Then, do your best to find suitable substitutes. There are many great gluten-free options out there! :)
  • Wait at least six weeks to feel better after going completely gluten free without cross contact. While it is essential to continually be strict in your gluten-free diet, those first six weeks are crucial. Do not cheat yourself by eating even the smallest bit of gluten. It's not worth it!
  • People around you (family, friends, acquaintances, strangers) will, at first, most likely not understand the extreme caution you must go to in order to keep gluten completely out of your system. Don't let this bother you. I've discovered this not-fully-understanding reaction is very natural and quite universal.
  • In order for people to "get" where you're coming from in your endless gluten-free preparations, you'll probably have to explain your situation multiple times. This is where patience comes in handy. :) Again, don't let it bother you. People simply don't understand what it means to live completely gluten-free, unless they have delved into a celiac's world. Also, please remember that we all forget things. Scientists have proven that our brains really do hold a limited amount of information. If something doesn't apply to us, it's easy to forget about!
  • Once people truly understand your diagnosis (this could take a while), they might forget or make mistakes when preparing food around you. It's totally normal, and you should not take offense.
  • Try to see the positive: things could always be worse. Think of all the problems in the world. Be thankful that this particular disease has treatment that works. Ideally, someone, somewhere will eventually find a cure for celiac disease...I pray for a cure every night!
Lastly, something that really helped me in dealing with my precious babies' celiac disease diagnosis was a scene from "Wild Hearts Can't Be Broken". (By the by, Wild Hearts is one of my favorite movies ever. I loved it from the first time I watched it, and I never tire of it. I've probably seen it at least 20 times!) Sonora Webster had recently received the diagnosis that she was blind, for life. Sonora was in denial at first, until her fiancee, Al Carver said to her,
"You are a human being and there are limitations. You can't run away from it. You can't hide from it and you can't change it. It simply is."
Those words bring tears to my eyes because they are so true. I believe the best way to cope with something that's hard to deal with, is to see it for what it really is. I mean, stare celiac disease in the face. Really come to know and understand what it is from every angle. Once you know what you have to deal with—and fully accept that your situation is not going to change, you can do the necessary work to make your body healthy.

I hope every celiac disease patient can get to the place of truly accepting what is, and move-on to live their lives happily and healthily!

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