Tuesday, April 27, 2010

Gluten-Free Life Update

I've had a few people ask how things are going with Jude since we've gone off of gluten and I thought I'd give an update for anyone who has interest. Because I've become so passionate about this I may get long winded, just to warn you! :)

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
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,

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.


Erica said...

AMAZING! I've often wondered if I'm gluten intolerant...now you have me really wondering. My friend Tara is GF and she has great recipes on her blog - I'll email you her info. :) She's super cool too. :)

Pete and Rosie said...

Have you been out to Bob's Red Mill in Milwaukie? I keep wanting to plan a field trip out there...I hear it's a great source for organic and gluten-free stuff, and it's cheaper out there than buying it at Fred Meyer or other major stores. Excited to see you guys soon!

Brandy said...

Thank you very much for this very insightful post. I'm not sure how I came across your blog, but am so glad that I did...for a couple reasons! I've often had the same thoughts about our 3 year old son, but keep trying to pass it off as "he's 3!" and our doctor did test him for celiac, which was negative. After reading this, I think I'll press a little harder or at the very least, change our diet.
Also, your photography is BEAUTIFUL! And as a mom, playing with photography, I love that you give little tidbits about how your photos were taken and some advice. THANK YOU! :)
Brandy Sprick

Crystal said...

Bethany, have you seen the cookbook called "Babycakes"? It is one of my favorites... they are all wheat free (quite a few are gluten free, but the rest would be easy to adapt) and vegan baked goods. It has my favorite recipe for chocolate chip cookies since I have stopped eating wheat. :)

melissa said...

Educational post! Thanks for sharing this part of your life. You are obviously NOT a bad parent! My favorite thing is that you are giving the glory to God.
Melissa Paisley

Annie Schilperoort Photography said...

Wow! That is amazing! SO happy for Jude and you guys, that would be so hard and I'm glad that you are on the other side now. Don't know if you've already seen this one, but here is a blog with some good recipes on it:

Kent said...

Excellent post. I knew big chunks of all this, but it was good to get the whole picture. I am really glad to know that Jude is feeling better and that living with him is so much more pleasant.

Leticia said...

I am so happy for you and your family. My older sister's son had a lot of growth and frustration issues and after a lot of prayer and research they found he was allergic to wheat and the change in him was amazing as well. Wishing you all the best!

laura said...

What an amazing journey you've been through! And I thought your days were just filled with taking amazing photos! :) I'm so glad that you've discovered what was ailing your sweet boy, and I'm happy to imagine all the new and wonderful discoveries you'll be making with him now that he feels so much better! Yay!!!

Amber said...

So glad to hear that Jude is doing so well!! I love reading about your family and seeing your positive outlook. It appears that your whole family will be healthier now with all that delicious food - yum! :)

Kati said...

Wow...Insightful indeed! Brandy and I were just talking about your photography and how we each "knew" you yesterday, so I thought I'd come check out the lastest on your blog! Not sure if you remember me from good ol' Northwest Hills or not...but anyhow!!!

I too had my son tested for celiac (my grandma, aunt and cousins on my mom's side all have it) and the simple blood test was negative. We have recently discovered that he is quite "addicted" to sugar...and getting the kiddo to eat anything semi normal is quite the struggle! We've had growth questions, anger and frustration struggles, food battles...many similar symptoms you also experienced! Hmmmmm...I am now flooded with questions and avenues to research! Thank you for sharing your experience!!!

Kati Albin (Langton)

John and Natalee Warren said...

Bethany, this brought so many tears to my eyes. We were already gone when all this went on but I am so thrilled for you guys and for Jude. This in fact tells of what a great parent you are to get to the bottom, follow your gut and do the right thing for your family. You are making a sacrifice that many parents wouldn't for their children. I see parents choose not to in my school all the time. :( But, let us thank our Father in Heaven for being gracious to give you the heart and mind to do all this! His is the glory!!

Marilyn said...

Praise God!!! Oh, how I know. As Leticia said our son had so many issues with growth, attitude, eating, etc. FOUR doctors and no answers. I finally went to a naturapath (sp?) when Daniel was almost 4 and he did a blood test which showed Daniel was allergic to gluten, peanut butter (he too lived on peanut butter sandwiches), and a multitude of other things. I had a different child after 24 hours. Truly. He is now 16 and taller than I am. We were able to reintroduce all those allergens back into his diet after a few years with no reactions. Blessings on your journey!

Chelsi Ritter said...

bethany i'm so glad jude is doing so well! thanks for your insight and i'm glad you are all feeling great due to the gf diet.

Melanie Whitaker Photographer said...

What an amazing story, I'm so glad to hear the good news, thanks for sharing!! Food is an amazing thing, and if you think of it as really the fuel for your body, it's important to get the right kind in there...especially for sweet little Jude. Excellent job listening to your Mommy gut :)

Chris Fegles said...

Bethany, I love reading your blog! Your true self shines through and of course I love photos of family, although it sometimes makes the distance feel farther :( Sorry that Sunday was tough! And we have your little cooler so we'll make sure you get it on the wedding weekend. Love you, chris mom