We are not only on an adventure, but my legs are sore from all of the ups and downs, lol. Sometimes if doesn't feel like we are climbing hills, but instead mountains. So my last post explained our continued concern with Macy's weight. We were able to get into GI quickly, and saw them last week. Our appointment was interesting, with all of us knowing that Macy is tiny, has tiny people on both sides of the family, and is just meant to be small. However, she is super tiny. Tinier than I was at her age, tinier than my mom was at the age, and any other small family members. We also all know that Macy has numerous health conditions and has battled illnesses and surgeries for almost 11 years. It's so hard to say that there is just one thing causing it.
So the plan when we left there last week was to continue nutritional drinks. The dietician offered some other suggestions of similar drinks that would add more calories. We still have to order them online, and they are still costly. We are continuing with her eating plan of 3 snacks a day, and 3 meals a day. She also started Macy on a medication that is supposed to increase her appetite. We also headed to the lab for more blood tests. We did all of those, and decided to focus on the next few days of Christmas, and put the medical stuff on the shelf for a few days.
We had a wonderful Christmas!!!! We did all of our very special traditions with the girls, and had the most magical night on Christmas Eve and magical morning Christmas morning. We are truly blessed! We spent a lot of time with family, and the kids absorbed every moment of all of the love and attention from everyone. The day after Christmas we spent the afternoon visiting with some great friends, and just catching up. It was a very enjoyable weekend!
So after all of the excitement of the holiday, it finally dawned on me to sit down and check on her lab results. Riley has an online portal to check test results, upcoming appointments, etc. That is when I knew it. I knew what was aiding in making Macy so tiny. I knew what it was that caused her be so slim, after eating very similar foods and similar amounts as McKenna does. How is McKenna growing and Macy not? Well, after seeing those results, doing some research of my own, and then touching base with the doctor's office first thing the next morning, we had some answers.
Macy has Celiac Disease. "Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. It affects 1 in 100 people." Gluten is a mix of proteins found in wheat, as well as rye, barley, and oats. It is serious, however treatable with diet. It will definitely change our lives. It is not something she will out grow. She will live with this for her whole life. The good news again is that it is treatable, and more and more gluten free products keep hitting the markets.
The doctor called me herself to tell me the news. The crazy part was that we were at McKenna's 7 year well-check, and I was able to tell our pediatrician the news right then as well. He, as well as our GI doctor, said this explains a lot. Some of the symptoms of Celiac Disease are diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications. In children it can cause problems with growth and development as well.
When I spoke with our GI doctor, we set up a meeting the next day, so she could sit down with us to discuss it, as well as give us the opportunity to sit down with a dietician to discuss Macy's diet. We were able to do that today. We talked about the effects on the body, the symptoms, and how very important it is for her to stick on the diet. One "cheat" can cause the symptoms to return as well as the entire stomach lining to become inflamed. We have decided as a family to transition into a gluten free home. It will take a little time to transition since we kept some of the "gluten" products to finish them off for the rest of us. Macy is strictly gluten free from now on. As we were leaving the hospital, my phone rang. It was our doctor. She was able to access some old tests from the old system (Riley transitioned their medical documents this past year). Macy was tested in 2012 and 2015 for Celiac and was negative. So she developed it. Crazy!
We headed to the store following our appointment. Longest shopping experience ever!!!!! It is definitely a really big life changer. The food at home we can manage.....costly....but we can manage it. The big challenge is going to be dinners out, as well as friend and family get togethers, and family holiday meals. Just like always, with each new diagnosis, Jeremy and I looked at each other and said "we can do this"! We'll be just fine!
If anyone of you have experience with Celiac Disease, I would love your tips and ideas in order to make this doable for our family. I hope in no time we'll be experts on this just like her other medical conditions.
We truly hope this next year brings a little relaxation medically for our family, as well as some positive health changes for Macy. Happy New Year everyone!
I have been reading your blog. Thanks for sharing everything! I can bet Macy's stomach pain and slow growth are due to the Celiac and thankfully it's an easy fix. We have been Gf for 12 of Laurel's 15 years. There are many improvements in labeling and lucky for us with celiac, Gf is the rage. Here are some tips: The Bisquick mix is the best for pancakes and waffles even though the batter is wierd. Use grated potato for quiche crust, make pizza with egg and small amount of pancake mix batter with some Italian spices thrown in ...poured thinly into a large baking dish, drop in chunks of cheese and broccoli or pepperoni and bake. Always feed the kid before going out to dinner, always carry snacks everywhere and don't let other people try to cook for her. Only a few will get it. One slip and the autoimmune reaction is triggered for months even though there may not be outward signs. Ask your school to provide Gf food or pack lunches. The bread is always horrible and tiny ( we say the size of a postage stamp) but we can tolerate toast with Udi's or Kroger 3 Bakers GF white. Oh, and now the nutritional value of all the carbs is terrible... You have high glycemic index rice or genetically modified corn-pick one. We like brown rice stirfry, mexican haystacks, and cheese quesedillas for go-to quick meals. Lots more options out there. GF friendly restaurants are tough because you have to worry about training employees in cross contamination. Mostly we don't trust Chinese unless its PF Changs, Outback Steakhouse is careful, our local restaurants are the most careful and flexible, but try not to go out to eat when they are busy. You will have to ask a million questions and send the waiter back to talk to the chef. Sometimes the chef will come out to your table. Gotta watch out for soy sauce, marinades, sauces, salad dressings. Oh and 5 Guys is the best for fries!!! And Dennys is our new very favoriet place. I had never been there till I found out about the GF menu. You can even get GF English muffins there! yeah, we could write the book on gluten free living!
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