God's timing in when we discovered Jude was gluten intolerant was amazing. We were out of town, visiting family, and had so much help with transitioning our cooking/lifestyle and parenting through the whole transition. (Thank you Dad & Janet from the bottom of our hearts for all you helped us with and taught us! Thank you.) Janet took me shopping in the produce section of a local market and we bought so many vegetables that I'd never cooked with before. Most of those are now our favorites!
By the way, these photos that I put throughout this post were from a fun day out at my dad and Janet's. Jude had asked to roast marshmallows that day and Grandma Janet took him into town for a special trip just to buy marshmallows. The kids loved roasting them and eating them! (...since then we've discovered they have gluten in the dusting on them, but hey, ignorance is bliss and it was super fun!!) :) I just love these photos of that sweet day and the great memories. Here's my wonderful dad with Selah.
The first few days of Jude being off of gluten were mostly focused on "wow, what can we eat?" Because Jude's been hypoglycemic the past year and a half I've always followed the rule of feeding him a protein paired with a carb. Because getting Jude to eat was always such a huge battle we gave him what he would eat. He loved PB & J. We went through a lot of Dave's Killer Bread people! :) He also would drink milk, so we let him have that since it seemed good for his blood sugar issues. The horror when I got his labs saying he was highly gluten intolerant and allergic to milk about made me want to pass out. That's all the kid lived on for a year and a half! Oh dear. What I thought was helping was clearly hurting.
DAY 5 of Jude being off gluten was an elating day. I got excited. I held back tears. Often. My kid was changing. Did any of you see that movie with Harrison Ford & Brendan Fraiser called Extraordinary Measures? At the end of the movie the kids are giggling due to the sugar in their bodies and the enzymes... anyway, I thought of that movie as Jude's body was very slowly getting rid of the gluten and functioning like it should again! Happiness. Joy. Thankfulness. Amazement at God's creation and the biology of our intricate bodies. Here's an email I had sent to family on that DAY 5 without gluten:
Hi Family & Close Friends,
I wanted to share with you about our past week. Last Tuesday we got our lab results that Jude is gluten intolerant. Since then I feel like our life has changed so much!
I can say with certainty that the past year and a half of our lives have been challenging with Jude. Don't get me wrong, he's a WONDERFUL boy and the joy of our lives, but things changed when he became hypoglycemic a year and a half ago. At first I thought maybe it was just the "terrible two's" but over time I saw more than just that. He became moody, semi controlling/obsessive, easily frustrated, over all not feeling well, had little desire to eat, every meal was a battle to get him to eat, he fell off of the growth chart, got a large cavity between his two front teeth (even though I don't think I gave him juice until he was two), would wake up with sugar lows so bad that he'd vomit, and I began to slowly withdraw myself from social situations especially where other young children were involved because Jude was easily "set off" and frustrated. Sunday School & Preschool brought on much anxiety for me and I dreaded taking him. I could not figure him out! I wanted soooo badly to help my sweet boy who I could tell was miserable, but I was so baffled by it all that I just started to think I was a terrible parent. We had been to so many doctor appointments and I had been reading online looking for answers. There were times I questioned if he could be very boarder line autistic, but then he did show affection, so I knew it wasn't that. But I've had trouble even being able to hold a conversation with him. I'd see other parents talk to their kids his age. And Selah, before even turning two, I could have more conversation with than Jude (I know she's a girl and boys are different, but even simple conversations didn't go well with my Jude). In my gut something was so "off" and I was desperate to find answers, even if others thought he was fine.
We saw a second endocrinologist months ago who gave me a glimmer of hope. He was really good at his job, spent hours with us, asked tons of questions, and assured me we'd get to the bottom of Jude's low growth and blood sugar issues. He discovered that Jude's an entire year behind in growth and his blood sugar goes low pretty easily, more so than those with "normal hypoglycemia". This July he plans to do a 4 hour test on Jude hooked to an IV to see how his body reacts to estrogen and glucose, trying to get to the bottom of his blood sugar/growth issues, and to discuss putting him on a 12 year growth hormone plan. I think this doctor is amazing and I'm so grateful for his thinking and care, but the thought of this long test didn't excite me as a mom. So, I decided to start praying every single day that Jude would grow, hoping that by the day of that July dr. appt. we'd have new answers or that he'd have grown so that we wouldn't need to take such extreme measures if they weren't necessary. So, every night as we tucked Jude in bed we prayed. Lord, help Jude to grow.
In all of my reading online I'd noticed that "celiac disease" often came up when I was searching things like hypoglycemia or type 1 diabetes (which is in my family) and colitis (which is in my family), and low growth... I became suspect of gluten. I asked Jude's primary care physician a year ago to test for celiac disease and they did a simple blood test that came back negative. When I talked to the second endocrinologist I asked him to test Jude again. Again, the blood test came back negative. The more reading I did, I discovered that the blood tests really just show a lot of damage that already exists in your small intestines. If you just have severe gluten intolerance but haven't yet developed celiac yet then you won't test positive until enough damage has been done to show up in your blood work. The better test for gluten intolerance is a stool test.
Around this time I was talking to my friend Jana who had tested as being gluten intolerant and she gave me a highly recommended lab to work with to have Jude tested (stool test). She very much suspected Jude was gluten intolerant based on all of my descriptions of our daily life with him. She too is hypoglycemic and has been since she was a very young girl.
So we did the stool test and Jude's labs came back saying he is highly gluten intolerant and his HLA gene analysis reveals that he has two copies of a gene that predisposes to gluten sensitivity. Having two copies of a gluten sensitive gene means that each of his parents and all of his children will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
Here are some things gluten intolerance can cause in people (everyone will have varying combos and I haven't listed them all, just ones off the top of my head):
Abdominal pain
Low growth
Tooth decay
Moodiness/depression (Going off of gluten is often the treatment for children with mild autism)
Puffiness & bags under eyes
Fatigue
Low appetite
Type 1 diabetes and other autoimmune diseases
Itchy, inflamed skin if your celiac manifests itself in your skin (Which Josh has had for almost two years all over his hands)
And more symptoms...
SO, all that to say, I wanted to share with you what the past 5 days have looked like for us, having taken Jude off of gluten! It has been miraculous. Literally. Every day I thank God that we received the news that Jude is gluten intolerant. I have a new child. I have my happy baby back! It brings me to tears. Today we've seen the most difference (day 5), and I couldn't believe that I ended the day by saying, "Wow, that was a fun day!" The past year and a half have been such a silent struggle (thinking it was my parenting) that I feel like God's given me this huge gift in having my son back!! God has answered my prayers. He is SO good!
The major things we've noticed in Jude in just 5 days:
Puffy face and bags under eyes are gone (the past year and a half every time I took a photo of Jude I edited out the bags under his eyes and use to think it was so strange that my 3 year old who slept in late every day had bags).
Today he ate like I've never seen him eat. He ate all day long.
Jude's countenance is different. He's much happier and learning to communicate.
Situations I use to fear him blowing up in due to his frustrations and obsessiveness (which would happen about 10 times a day) happened only ONCE today and it was terribly mild! One simple time out took care of it.
Jude was like a totally normal child today. He laughed in the back seat of the car, ate all of his meals sitting at the table, had simple conversations with me, even asked for "more" at meals. He was pleasant.
I just had to share because my excitement and gratefulness is overflowing. I've read so many others who struggled with this share that as soon as their kid got off of gluten, they got a whole new kid back. Wow. To have a medical issue treated with food rather than medication, is great. Our bodies amaze me.
Thanks for listening and for your phenomenal support in our lives. I wanted to share this good news and answered prayer to those of you who are closest to us.
If you ever care to do a little reading about Celiac disease/gluten intolerance or suspect someone you know or love might have it here are two good reads:
The G-Free Diet, an easy read and very interesting. http://www.amazon.com/G-Free-Diet-Gluten-Free-Survival-Guide/dp/1599951886
And The Gluten-Free Girl, blog. http://glutenfreegirlabout.blogspot.com/ She shows pictures of her face 1 week before he diagnosis and 1 month after and it's quite the difference! Look in her "About" section. Here's a quote from her:
"I’m not the only one who had to fight her way through the medical system to receive the correct diagnosis and become healthy for the first time in my life. Americans have to wait an average of 11 years, and many doctors, before finally being diagnosed. It is estimated that 1 out of 100 Americans has celiac disease. Only 3% of us have been diagnosed."
From here, we'll continue to watch Jude change, continue to help him in every way we can, and continue to pray. Thank you Lord for always hearing my prayers.
And thank you friends and family for being so wonderful.
Much love,
Bethany
So that was my update then at DAY 5.
Today is DAY 21.
Jude continues to get better. Josh and I marvel each night about the "new Jude" we're enjoying. Tonight we went to a birthday party for one of the kids' friends, and Jude didn't have any "explosions" or fussiness or obsessiveness. He played happily and had a great time. I didn't even fear going! That says a lot. I still see moments where I brace myself out of habit, thinking he's going to get upset over something, and then when he doesn't I'm so pleasantly surprised again.
Jude has been eating a lot. Both kids have. Eating is what we do now. :) I feel like my day is planned around meals. I make pretty much everything from scratch. Because our whole family went off of gluten it made it much easier, and what has really surprised me is how great I feel! I have so much more energy. It's like I'm getting so many nutrients from what I'm eating that I no longer have that sluggish feeling I use to live with. And I use to cook and enjoy it, but now I love it. I've fallen in love with good food! I love leafy greens, I love salmon, I love quinoa,... I also love home made cake frosting... :) which I promised I wouldn't make anymore now that the kid's birthdays have passed.
So, what do we eat?
We eat a lot of fruits, veggies, brown rice, quinoa, fish, beef, chiken, nuts, eggs... just good food, and I love that it's full of vitamins. That's my favorite part. God created amazing food for our bodies and I'm so thankful for his provision.
Our favorite breakfast recipe is Banana Almond Pancakes! So amazing! No need for butter or syrup they are so good. (www.elanaspantry.com has been a great resource for cooking! She has great recipes. Our Banana Almond Pancakes are a modification from her gluten-free pancakes recipe on her site. I replaced the agave nectar with a whole banana.) I've also started creating my own recipes. Like tonight we had corn tortillas filled with grilled butternut squash, black beans, corn, collard greens and lime. They were sooo good and really filling!
Anyway, that's our update. I'll quit rambling about food now! You're amazing if you made it to the end of this insanely long blog post. :)
I'm clearly very new on this journey, but a few of you have already emailed me and asked questions about gluten intolerance, and I'm happy to pass along any info I have.
Blessings!
