‘I’ve never seen him do that.’ I watched as he scratched his face in his sleep. It was a Hail Mary.’: Mom shocked by Celiac disease diagnosis after noticing ‘moody, volatile’ behavior in son

“I am the mom of three precious little boys. They are all completely different and they each bring to life their own signature personalities, strengths and needs.

Gatlin, our oldest is the most delightful child you will ever meet. He is helpful, generous, empathetic and thoughtful. He’s the kind of kid that sees you taking out the trash and offers to do it for you. He was 6-7 and I started seeing a shift. He was moody. He would hit bouts of rage that were seemingly unexplained. He was volatile and every moment felt like I was walking on eggshells. Because his eruptions had no apparent triggers (sensory, hunger, issue with a sibling etc.) I felt constantly on edge waiting on the next blow up. He was always tired. He would sleep in the car even on short rides. He couldn’t focus on his school and would get easily frustrated. I mentioned all this to the pediatrician, I was worried about everything from Autism to sexual abuse. We have a long-standing relationship with a MD we happen to love so I knew Gatlin would trust him. He talked with Gatlin and checked for signs of abuse, did another assessment for Autism, ran more tests on his eyes (he wears glasses) to be sure it wasn’t just vision frustrations, we talked about the possibility of SPD and dozens of other acronyms. Nothing fit. I took him home and felt completely hopeless. I felt like I was losing my sweetheart of a boy.

Courtesy Katie Bryant

Then that faithful day, Gatlin was 6 when Sterling, our 1-year old son took the tiniest bite of the middle son’s sandwich, peanut butter. In a moment our lives changed forever. Thankfully I was aware of the signs of anaphylaxis because the middle child has a horrible antibiotic allergy, and we didn’t live far from the hospital. I walked out of that hospital two days later with a pack of Epi-pens, an appointment with an allergist and a baby I had no idea how to keep alive. The next few weeks involved appointments and phrases like ‘worst I’ve even seen in 35 years as an allergist’. Not really what you want your child to excel in but it’s not like you get to pick. My focus shifted to survival. I had an entirely new world to learn and I couldn’t read forums and articles fast enough.

I learned that Epi is temperature sensitive and US labeling laws are a joke. I learned to be diligent and how to take the best precautions I also learned that with an allergy like this, mistakes will happen. I knew to wash fruit before I gave it to him, I knew but, walking in from the grocery store with three young kids in tow, everyone asking for snacks, a husband calling out questions about something else I put all the cloth bags on the counter. I turned my back to start washing produce and then the bags themselves. His little toddler hands found an orange and bit into it like you would an apple. He was having a reaction before my brain could comprehend what was happening. (And no, he isn’t allergic to oranges, he’s been tested again and again, he is only allergic to peanuts). Somehow that orange in that mesh bag had gotten contaminated with peanuts, either in shipping or the store. It really is as simple as a child eating a peanut butter cracker while wandering around the store touching things, things like those oranges. I gave the first Epi and made the call. It took another two Epis to get him stable at the hospital and a slew of other meds. I am sure I didn’t, but I felt like I’d been holding my breath for 45 minutes. I finally let it out secure in the fact that we’d saved him. They decided to watch him for 6 hours as a precaution and I set about texting everyone to let them know he was ok; he was sleeping off the Benadryl and we’d probably be home around dinner.

Courtesy Katie Bryant

My husband was at home with the other two washing all the groceries, those bags, the counters and floors, the clothes everyone had been wearing and anything else he could think of. I was sitting in my uncomfortable, blue, hard plastic chair and leaned my head back against the wall when I heard him cough, the monitor started beeping and people started flooding into the room. No one telling me what was going on. I watched as his body once again became covered in hives and they gave another round of Epi and what seemed like enough liquid meds to take down an elephant. Finally, he was stable again. The ER doctor turned to me and said the words I’d only before read in forums, ‘biphasic reaction’, this means as soon as the meds start to taper down the anaphylaxis comes back, over and over and over. I threw up in a trash can.

They talked about admission, but the pediatric unit didn’t feel equipped to handle him, so we were transferred by ambulance to the Children’s hospital an hour and a half away. I had ridden in the ambulance to the first hospital, so I didn’t have my car, they let me ride in the transport ambulance meaning I was now an hour and a half away from home with no vehicle. I was explaining to the admitting Physician at the children’s hospital what had happened and why we were there when he made an announcement to the staff not to come into the room without washing up and to be vigilant because a second exposure right then would probably kill him. It had now been nearly 7 hours since the initial orange bite and the toddler hadn’t eaten anything since. He was awake and complaining of hunger. I asked what the cafeteria was like and quickly realized there was nothing there he could eat. They had open vats of peanut butter for bagels and sandwiches next to open vats of the applesauce they were offering. They told me where a Whole Foods was, I regretfully left him screaming for me with a nurse while I ran to a grocery store to buy some foods, I knew to be safe and some blueberries I could wash.

I ran back into the hospital to find his admitting Doctor screaming at a nurse who had apparently been eating peanut butter cookies over the charts, the charts they bring in patient rooms. Everything felt like a risk, my anxiety was at 10, I threw up in another trashcan before I could even get in the room to soothe him and give him some food. A nurse gave me two ibuprofens from her purse and a bottle of water ‘here, you look like shit’, I’ve never been more thankful for Advil in my life.

Two days later my husband and other two kids drove to pick us up. That beautiful man of mine walked in at 9 in the morning with two dressed and happy boys, holding the biggest cup of coffee for me. ‘I just assumed and got the biggest one they would give me.’ Bless that man. Again, we were discharged with Epis and little guidance outside of ‘avoid peanuts’ to which I sarcastically responded, ‘you think?’ It’s easier said than done.

On the drive home around early afternoon all three boys fell asleep in the car and I asked how Gatlin had been. We talked about how his issues had kind of hit the back burner in our minds while we tried to learn to navigate keeping the youngest alive over the last 6 weeks. I looked back at him sleeping in his 5-point harness and felt like I was failing him, I watched as he scratched his face in his sleep. I remember thinking, ‘I’ve never seen him do that’.

Courtesy Katie Bryant

We got home and settled into my new, normal level of anxiety over the next few weeks. Meanwhile Gatlin’s behavior and itching were completely off the charts. Again, I consulted the pediatrician who decided to refer him to our Allergist, he was worried that since the itching was new it could be something like a reaction to food dye or something more subtle than the anaphylactic drama case that is our baby. We tested for everything under the sun, he had a tiny skin reaction to wheat but not even enough to consider it a full positive. Finally, I said ‘what about Celiac?’ I admit it was a hail Mary. My limited understanding on CD told me that a gut disease would mean gut problems but at this point we’d tested for everything else. Our beloved allergist said, ‘I don’t think so, but I’ll run the test for you to rule it out.’

We did the blood work and were told it would be a week or so before we found out. Meanwhile I did some research on Celiac Disease. He didn’t have every symptom, but he had a lot of them. Depression, anxiety, rage, itching, feelings of isolation, body aches, fatigue, dark under eyes, but no gut symptoms so it probably wasn’t. I was standing in another grocery store when I got the call, ‘Gatlin has tested positive for Celiac Disease, you’ll need to follow up with a GI for a scope and biopsy I’m sending the referral now. I can’t believe we missed this.’ I looked down into my cart and put back half the food. There is no treatment for CD, no medication, only a completely gluten free diet. Before you roll your eyes, Celiac patients are the small percentage of people who can get cancer from ingesting gluten. Essentially what happens in their bodies when they eat gluten is the villi in the intestines is destroyed, eventually to the point that they are completely gone, and no nutrients can be absorbed. It can cause horrible symptoms for them ranging from gut issues to skin rashes, crippling anxiety to severe depression.

Courtesy Katie Bryant

Once again, I needed to become a label ninja to keep another kid safe. I quickly leaned the words ‘gluten free’ on a product mean basically nothing if you have Celiac disease unless it’s certified and even then, mistakes are made. Just like with the peanuts and other top 8 allergens, the labels only reflect ingredients, not handling or processing. ‘May contain’ or ‘processed with’ statements are completely voluntary. Essentially a company can make 100k jars of almond butter, then wash the equipment ‘to their standards’ and make boxes of pasta, then sell the pasta with no mention of the possibility of almonds. Awesome.

Finding food that was safe for everyone was hard and I found it easiest to stick to whole foods only. I also learned the hard way that products like mulch, cosmetics, sunscreen, shampoo, conditioner, toilet paper, dry wall and construction supplies can all carry top 8 allergens but because they aren’t foods you won’t find a label anywhere.

Over the first 6 weeks of his new gluten free protocol I saw little change in Gatlin, then somewhere around week 8 the fog started to lift. I saw smiles, running, energy. I saw joy again. By week 12 he was an entirely different person and he was back to offering to take the trash out for me. I had my child back.

My kids are 9, 6 and 3 now. I’ve managed to keep them alive despite their best efforts building bike ramps, needing stitches and the occasional cross contamination reactions despite my very best efforts.

Courtesy Katie Bryant

A few weeks ago, I came home from the grocery store crying. Right now the system we have for verification of the safety of each food or product goes like this: find what you want to buy, call the company and ask about their manufacturing, hope you’re given the right information (we nearly lost the toddler to a product I had called and verified), then if they say it is safe you post a picture in a social media group saying ‘has anyone tried this’ the other members of the group will respond with ‘yes, my child had a reaction’ or ‘it seems ok’ they will list what their child is allergic to and you compare comments. If all the people with almond allergies reacted but all the peanut kids were fine, it is *probably* ok. Then we repeat this for every item, every time. Sound fun? Now remember it’s not just food, it’s craft supplies, shampoo, potting soil and a million other things.

I came home crying because the 5 products I’d done hours of research on just weren’t available, which meant doing all that work, all over again for different brands.

My beautiful middle child saw me teary and asked me a question that forever changed me. ‘What would you tell us to do?’

I wouldn’t tell them to keep calling companies. I wouldn’t tell them this is just the hand they were delt. I wouldn’t tell them to accept the things they cannot change. I’d tell them to grit their teeth, dig in and change the freaking world. I’d tell them not to stop until they were satisfied, they’d accomplished what they set out to. And I’d tell them to do it immediately.

That night I started a petition. I am presenting it to law makers, Congressmen, Senators and the Governor. I am asking for legislation outlining a bill stating that any product, food or not that has been produced with a risk of contamination to the top 8 allergens (and more) must carry a label. Period. I’m not asking they change the way they do things only that they are transparent. I’m taking the offense.

I’ve been called little because in the political world I am no one. I’ve been called determined. I’ve been called the ‘Erin Brockovich of allergies’. I’ve been guaranteed a voice in the Senate by a man who laughingly told me ‘this isn’t my wheelhouse, but I’d rather support you than run against you in the next election because I didn’t’.

I am here, making waves and proving you don’t need anyone’s permission to be heard. I am here to tell you that if you find something unacceptable it’s time to change it. I am here to tell you to stop thinking ‘someone should do something about that’ and push up your sleeves and do it yourself.”

To sign Katie’s petition please go here

Courtesy Katie Bryant

This story was submitted to Love What Matters by Katie Bryant, 31, of North Caroina. Follow Katie on Instagram here and Facebook here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Katie here: 

‘We nearly lost him today. I pulled off wrappers, started dishing them out. I gave it to him.’: Mom feels guilt for giving son Popsicle that ignited peanut allergy, ‘We’re just trying to keep our kid alive’

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‘I found out devastating news. She’s in jail, permanently lost custody because she’s an addict. Crystal meth.’: Mom too wrapped up in her own ‘self-loathing’ to see past friend’s ‘mask’ of why she was so thin

‘He obviously doesn’t want to be touched.’ She huffed away, muttering that he was rude.’: Mom insists it’s ‘creepy, awkward’ to touch children without their consent, ‘I wasn’t the rude one’

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