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Our Celiac Journey

Motherhood

Read about our Celiac Journey here!

I’ve mentioned on my page a couple of times that I have Celiac Disease and that Grayson is considered “gluten sensitive” or “gluten intolerant.” TBH, I usually say he has Celiacs too because it’s simpler than getting into the semantics of it all. Several of you have asked me how we knew he had an allergy at all. It’s a pretty long, CRAZY, story. I’ll feature the entire story on my blog this week, but for now, I’ll start sharing in parts as much as Instagram will let me at a time.

It really goes back to his birth. I was induced at 37 weeks. His WHOLE pregnancy I had this crazy gut feeling that I was going to go to an appt, and they were going to decide to induce me. And that’s exactly what happened. While his pregnancy showed no signs of HELLP or Pre E, he was small. He was always hovering around the IUGR mark and he finally dropped below at an ultra to check growth so off to the hospital we went. The short version is he was born, 5 lbs on the dot, and completely perfect. NICU was there ready, but a quick assessment showed no reason for him being so small. We dismissed it and moved on as a family of now 5.

When Grayson was a month or so old, we decided to see a doctor about his reflux. He was projectile spitting as many as 40 times per day. BUT he was gaining great. We decided meds were the best choice and I would also cut dairy since we were seeing a bit of correlation there when I ate it.

The next couple of months were filled with med changes and diet changes. None of which worked. We’d see improvement for a few days and then back to the projectile spitting. It was so. much. spit up. We wondered about pyloric stenosis, but he was gaining well so his pediatrician really didn’t feel like that was it. She ultimately referred us to GI. We had maxed out on the dose for him med wise, diet changes weren’t helping and nothing was improving. Aside for the spit up, he also had horrible eczema around on his face, puffy eyes, and a diaper rash that even prescription meds wouldn’t treat. 

We got the GI referral in March- right as Covid hit. So, in person wasn’t going to happen. We scheduled a telehealth appt. So, over the phone, I explained Grayson’s symptoms and history. The doctor was extremely thorough. He asked all about his birth, his first days of life and even began to ask me about my and my family history related to GI concerns. I told him how G was small and that seemed to particularly interest him. And I also explained in my family, I would classify a lot of us having some IBS type symptoms, but no formal diagnosis for anyone. After I told him all of this he then asked how much I weighed. When I told him, he told me that I need to be tested for Celiac Disease. He explained he had seen some studies of babies being born to Moms with untreated Celiacs as IUGR and that the family symptoms I explained could be related to Celiacs as it’s a very hereditary disease. He also wondered if perhaps Grayson was reacting to the gluten passing through my breastmilk. Knowing people who had Celiac Disease, I thought there is zero what I made it to 30 and didn’t know. There was no way I had it, but if he thought checking me would get some answers about Grayson, obviously I was going to do it. 

The only problem was that being as it was the beginning of Covid and I didn’t have a PCP, it was going to be a long process to get me tested. Furthermore, you need to be consuming gluten for the markers to be present in your blood for the test to be accurate. But, no way way was I going to continue eating it is we thought that it was the cause of Grayson’s issues. So, I did a little research and found an at home blood test that would check for the exact same markers as the doctor’s office would. I ordered it and Charles pricked my finger. Y’all. I am the biggest baby over needles and this was the most dramatic situation ever. He pricked it on two when he was supposed to count to three. Apparently he does that to all his patients. I was pissed. And cried. a lot. Blood draws absolutely terrify me. But, it was done and we sent it off. A week or so later, I got the results. It showed a 99% probability that I had Celiacs. My blood markers were really high. I called the GI doctor immediately to tell him he was right. And we decided the course of treatment would be to eliminate gluten from my diet.

Two weeks later, we began to wean off meds and the spitting COMPLETELY stopped, the eczema had disappeared. The diaper rash he had virtually his whole life had also disappeared, and his swollen eyes were gone. There isn’t a ton a research out there on how gluten passes through breastmilk, but they really should use my child as a case study. The difference was unreal.

Today, if he gets into gluten, or I do and breastfeed him, he will vomit an entire day. It’s awful. He is clearly extremely sensitive, but since you need blood markers or evidence of small intestinal damage for a Celiac diagnosis, we are hoping he never develops true Celiac Disease. We obviously don’t plan to expose him to the point of either of those two things happening.

When I look back on my childhood, there are definitely signs, but not anything as obvious as Grayson’s symptoms. Now, I am thankful that today we are both happy, healthy, and gluten free!

First photo is with gluten in my diet. The second is two weeks later.

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