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You have quit bargaining and have resigned yourself to no “cheating” but you are seriously bummed. Welcome to Celiac’s Diagnosis: Stage 4 – Depression.
Celiac’s Diagnosis: Stage 4 – Depression
Parent View
Like I said in earlier posts, we’re glad to have a diagnosis or “reason” as to why our daughter had been feeling like crud all this time. However, what we didn’t know was that it was “our fault”. It’s passed on through genetics, oh joy. We had no idea, because why would we. We felt like shit (sorry, no other way to word it). I had some gastrointestinal (GI) issues off an on and thought I was the carrier. However, I was not, it was my husband. My husband was the only one to get the genetic testing (although we are currently working on getting genetic testing for the rest of us).
We really “beat ourselves up” over it for quite a while. It is pretty easy to feel depressed when you get the diagnosis or your child gets it. There is so much information you have to learn so quickly that your feelings go haywire.
Each day, it did get a little better. You learn more, start to feel like you had a handle on everything and then you would slip back. This has happened a lot with us. We thought everything our daughter ate or used was GF, then we would learn we forgot about shampoo, body wash, sunblock, etc. Give yourself grace. You are not omnipotent, you don’t know everything. The only thing you can do is each day do the best that you can.
Some days you will totally be a rock star and others, not so much, and that is OK.
Child View
Our daughter never blamed us for losing the genetic Russian Roulette. However, she did struggle with wondering if she would have a “normal” life. She wondered if she could still do or eat what she did before. The reality was no, she can’t always.
What she did find out though is that her family stuck by her. I learned to cook the food from her favorite restaurants that she couldn’t have anymore and remade the recipes that were her favorites. It is still a work in progress, sometimes it’s a success while other times it is a total kitchen failure.
She also can’t spend the night at a friend’s house. I can’t expect another family to try and accommodate her, but I do allow her to go to her friends (with her own snacks) and let her have friends spend the night at our house. She is even going on a field trip with her school where the meal is included in the price (she can’t eat anything from the park that I can tell). We will have to pay for food she can’t eat and pack a ton of food so she can eat. Do I like it, nope, nope, and nope. It’s not fair; however, it isn’t societies problem, it is ours/hers. As long as they allow her to bring food in, then we will take the hit and pay the extra.
Ultimately, we/she do the best we can so that our daughter can have the same experiences as her peers. We talk about each situation that comes up, make adjustments when needed, and then go and have fun.
Fortunately, we did not last long here. We have our moments just like everyone else, but we moved into acceptance (stage 5) with an open heart and embraced it.
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