Tuesday, March 10, 2015

Another Day, Another Diagnosis…


Many of you who I am friends with on Facebook know we’ve been asking for prayers for our Sweet Baxlyn. Here’s the scoop. Baxlyn has dealt with tummy discomfort for quite some time… for years, actually. She has mentioned her tummy hurting since about the time she could talk. In the beginning she would say her tummy hurt a couple times a week for a couple of weeks and then we wouldn’t hear anything from her for several weeks/months. She then would complain just a bit for a little while and then nothing for a while. Over and over. All the time she said her tummy hurt, she still acted normal. She always played, ate and was as active as she was when it seemed she was not in any discomfort. She, and the other quads, have always dealt with constipation, which is a very common long term problem for preemies. Miralax has been a regular in our house for years. We always chalked her “discomfort” up to being constipated and never looked deeper into the issue as it never affected her other than an occasional complaint.

Over the past 6 months or so, Baxlyn’s discomfort has gotten much much worse. Everyday she tells me “Mommy, my tummy hurts.” Lately, I’m hearing those words dozens of times a day. I took her a few months back to be examined by our wonderful pediatrician and we decided to be more aggressive with the Miralax, again assuming it was constipation. After a few weeks of no change, our doctor send us for abdominal X-rays which confirmed she was “FOTS” (full of toddler stool). Again, we were told to up the Miralax. With her discomfort only becoming more frequent and beginning to bring her to tears at times, I knew something just wasn’t right and that Miralax wasn’t the answer we needed.

Our pediatrician sent us to a gastroenterologist (GI). Dr. Russo met with Baxlyn and I last week and we talked and talked and went over her history. After a manual exam, Dr. Russo wanted to do blood work right away. Friday, Dr. Russo called me and said…

“I’m afraid Baxlyn has Celiac Disease.”

What? I was stunned. I asked him exactly what Celiac Disease was and he explained it’s the “gluten thing I hear so much about”. People with Celiac Disease have an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. There are Villi that line the inside of the small intestine and in people with Celiac, the gluten in foods damage those Villi which keeps the person from being able to absorb the nutrients needed to grow and live a healthy life. It is estimated to affect 1 in 100 people worldwide. I was told many people choose a gluten free (GF) diet as it makes them feel better in general. However, it is essential for people with Celiac Disease to have a GF diet. Good news is that because so many people are choosing to go GF, stores are starting to carrying more products that are safe for people with Celiac.

Although based on her blood work alone, he feels 99% sure Celiac Disease is what we are dealing with, Dr. Russo will be performing an EGD (Esophagogastroduodenoscopy) this week to confirm the diagnosis. He will take several biopsies of her small intestine. He said the walls of the intestines are supposed to look like a shag carpet and with Celiac, they often look like tiles. He also said, due to being a quadruplet, he thinks there is a good chance the other quads will have it as well. After we confirm Celiac in Baxlyn, he will go on to test the others. I’d imagine that needing to go all GF for Baxlyn, we would automatically go GF for all of them (us). That being said, it is very important to know if the others have it as well for overall health reasons as it can affect many other areas.

I feel overwhelmed, to say the very least. The condition is treatable with a strict diet but it will mean a HUGE lifestyle change for our family. I personally couldn’t read a food label to save my life and have never been on any kind of diet. For now I’m depending on the good ole’ internet to learn more about the disease and what all comes along with it. I’m hoping to connect with other moms who have a child with Celiac to learn more. Our doctor will also be setting us up with a dietician to help direct us as well.

For now, please continue to pray for us. I feel like we juggle SO much these days and it seems as time goes on, more and more “medical things” are thrown our way. You are all aware of the surgeries three of the four underwent just before Christmas but there have been other things we’ve been faced with that we’ve chosen, for their own privacy, not to blog about for now. Now this…. which isn’t something that will “pass” like many other things. Since NICU, Miss B has had the “easiest ride” as far as long term doctors go. While check ups, procedures and trips to hospitals are a regular occurrence for Brody & Kylee, a lot of this is new for B. She’s a very brave little thing, that’s for sure, but I know she’s nervous about what is going on and I’m trying to explain things the best I can to her, especially for not understanding it all myself. She will be going in super early on Thursday morning for her scope. She will be put under anesthesia and the procedure itself will only take about 30 minutes. We’ve been told not to change anything in her diet just yet, not until we get results from her EGD. In the meantime, I’d love to hear any experience YOU may have with Celiac Disease, especially in children. I have so many questions, I don’t even know where to begin!

In the end we know and trust that God has it all in His hands and he has a perfect plan! We also know that He will be with us every step of the way, regardless of any challenges we face! I’ll keep you all posted!

(Photo credit: Amy Horton Photography.)


  1. Bummer but this is very easily treated with dietary changes!! My mom and older sister both have celiac and are thriving with the "paleo" diet. I recommend the website Nom Nom Paleo for recipes, super yummy and healthy and she's a mom so kid-friendly to boot. Hugs!! You & your littles will be just fine 😃

  2. My uncle is celiac since he was born and he has a happy normal life eating gluten free. And he's healthy. Also none of their siblings and daughters is celiac. But of course everyone is different.
    A friend of mine is celiac too. Since the age of 3. And nothing changed in their life apart from diet. They had to change it from very young so it is super easy to them eat gluten free. You know there are tons of recipes for celiacs in Internet. And I repeat, they are just healthy! Don't worry I'm sure she will be fine!

  3. Hello! A friend of yours gave me your info! I am sorry to hear about your daughter but the good news is, she'll be feeling better soon! I am 31 years old & have been in & out of ER's & GI's & spent most of my childhood doubled over in tummy pain, potty issues & body aches. Last April 2014, I took another trip to the ER & spent 5 days in the hospital & was finally diagnosed with Celiac Disease. I was so overwhelmed & had no clue where to start! I figured that I would just have to stay away from bread & pasta - oh was I wrong! So much more has gluten - candy, salad dressings, seasonings, etc. I did a lot of research & asked a ton of questions & I am now finally feeling confident in what I can & can't eat. It takes time but hang in there...you'll get a grasp of everything & it will all come easy to you! Facebook has a Gluten Free page that has a lot of great info & recipes. You can also get a free Celiac care package at this website - http://www.cureceliacdisease.org/living-with-celiac/care-packages.
    My daughter (age 5 1/2) has been showing some of my same symptoms but her blood test came back negative. Her GI said that sometimes blood tests come back false so we still need to do her endoscopy to confirm. Its better to catch it early so they won't go through life in pain, like I did. :-( I have moved my family over to a mostly GF diet but they do eat bread & some other things out of pure convenience.
    I will be praying for your family & please email me if you have any questions! My email is stephdg21@hotmail.com. Are you in the Dallas area? If so, I know of a lot of great places that are safe to eat! :-)

  4. My stepdaughter was almost 30 when she was diagnosed and I think we all ran around for 6 months thinking "what will she eat???" before we calmed down. At almost the same time one of my best friends found out she was gluten and dairy intolerant. It feels overwhelming but it is not so hard really, once you get over the shock. Meat or fish or chicken + potatoes or rice + veg and you have a gluten free meal. Those are all pretty easy, "normal" foods. Just keep it simple, experiment a little at a time, and you will be ok. And most ice cream is gluten free, that's good news!

  5. Praying for your family. I don't have much experience except a coworker that has it and I am thankful you caught hers at a young age. My coworker had a lot of issues because they didn't figure it out until she was an older adult.

  6. i follow the gluten free diet and have many GI issues feel free to contact me with any questions at jamie.klapper@gmail.com

  7. I would highly recommend the 'Against All Grains' cookbooks. They have many GF recipes that are very yummy and could be kid-friendly.

  8. I was diagnosed with celiac about seven years ago. It's pretty easy now to eat at home gluten free, and restaurants are getting better (Disney is *great* for food allergies! Great place to take a holiday as a celiac with kids!) There are lots of products available to replace items you eat now with gluten -- but honestly, now I eat few of them. I eat fruit, vegetables, protein, dairy and occasionally rice and I think I'm probably healthier because of it.

    You'll figure it out, and it won't be too hard. I promise!

    Good luck!

  9. There are lots of things you can order online as well. My challenge is a huge desire for sweets. Check out www.sugarlessdelite.com


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