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When Behavior is a Celiac Symptom
I am very eager to share this post. Please read it and please share it. It can be hard to understand how something we eat can affect our mood, our behavior, our thoughts, and our actions. And it can be harder to suspect celiac when behavior is the only symptom.
My Personal Experience and Understanding
This story isn’t about me. It is about Gabe, age 11. But I can relate to the emotional symptoms and I can tell you (as an adult) how real the impact is. For years, I thought I had (severe) PMS, just because of my moods. I didn’t like the way I felt at times. Probably more often than at times.
I was extreeeemly shy as a child, but as a young mom, I remember yelling. A lot. And I was a very crabby wife. I recognized it and I did not like it. But I couldn’t change it. And I didn’t know how to fix it.
I could feel the layers of dark clouds fade once I found out I had celiac and removed all gluten. And when gluten snuck in through cross contamination, I could feel those dark clouds invade my space again. But it wasn’t just my space it invaded. What was worse was that it invaded my family’s space.
It’s not just an emotion that comes from being unhealthy (which I was – physically unhealthy). Nope. Totally different. It is gluten’s direct impact for me and for many others. Pure and simple. Mood swings. Anger.
A Story to Help Other Children
Yes, I’m excited to share Gabe’s story. And I’m so grateful to mom for sharing it with me. I hope that this story helps increase awareness that behavior issues in some children can be a direct symptom of undiagnosed celiac.
Gluten free is certainly not the answer for every child and adult battling emotions, anxiety, depression, etc – but it is for some. And I simply cannot stand the thought that some kids are battling uncontrollable behaviors out of lack of testing.
For those living with undiagnosed celiac, the answer can be so *simple.*
(Please remember to complete celiac testing prior to removing gluten.)
So let’s move on to Gabe’s story.
For anyone who knows even a little about celiac, the first symptom that comes to mind is gastrointestinal. This goes for many physicians as well. Without GI issues, celiac is too often overlooked.
Mom, Samantha, is unclear as to when Gabe’s celiac symptoms actually began, but his symptoms were never digestive.
Growing pains: Gabe started experiencing acute leg pain some time between his 2nd and 5th birthday. The doctor called it “growing pains.” Walking also caused pain, although he was able to be very active: running, climbing, jumping. (His growing pains, by the way, ended when he was eventually diagnosed with celiac and gluten was removed. hmmmm)
Behavior. Behavioral issues began around the age of two. Ahhhh….those terrible twos. But it was more than that. And they continued well past that stage of development when it’s so appropriate to act out.
Rages. Night terrors. Aggressive behaviors towards mom.
He was given a mood regulating prescription, but mom wasn’t convinced it was appropriate. She decided not to give it to him.
According to this article,
Toddler behavioral symptoms may hint at celiac disease
(Reuters Health) – For small kids with a family history of celiac disease, anxiety, aggression, sleep problems and other behavioral issues might signal that it’s time to test for celiac, researchers say.
When Gabe was 7, a Psychologist suggested that there may be a dietary component to his behavior issues. “I suspected either dairy or gluten, pretty much all he ate,” Samantha said.
She asked his doctor to include some tests next time he needed to draw blood. The doctor decided that it would be a good idea to test for celiac because his chart didn’t reflect any weight gain that year. (He had, but the nurse wrote down the wrong number. Thankfully. The appearance of no weight gain suggested a physical symptom.)
The blood test was positive. His numbers “were off the charts,” mom shared. The subsequent biopsy was positive as well.
Going to the Dietitian: A Family Affair
A celiac diagnosis requires a gluten-free diet. Mom was referred to a dietitian, which she found very helpful.
Samantha offers this great suggestion for others: She brought her mom, Gabe’s grandmother, to the first visit with the dietitian. This helped her, as someone who is also very involved in Gabe’s life, understand the importance of avoiding cross contamination.
How is Gabe Now That He's Gluten Free?
“It feels like the night terrors and the leg pains went away almost immediately,” mom shared.
“The behavioral issues took longer, maybe a couple of years.” Samantha shared that it also took this long for Gabe’s lab work to reflect appropriate numbers. “But by 9, I definitely saw a difference,” she said. “And I had tried everything.”
“Now, he’s like a different child, the best version of himself.” (This brings me such joy and such emotion. What a blessing. Doesn’t every child deserve to be the best version of themselves?)
Mom is confident that undiagnosed celiac was responsible for her son’s behaviors. When reflecting on those years, she can’t help but wonder what type of person he would be now, or the person he would be through his teen years had he not been properly diagnosed. Had he not been following a strict gluten-free diet. (I personally wonder how many of the heated conflicts I had with my own mom were fueled by gluten.)
Being gluten free is Gabe’s medicine. Their home is completely gluten free. No one is allowed to bring gluten into their home.
Gluten and Mental Health: A Fascinating Read
Here’s a study that I recently discovered that has a real WOW factor! Warning: It is very lengthy. But don’t let that stop you from visiting the article. Scroll through it, even if just to check out the headings. Its nothing I haven’t heard and read before, but dang—-if celiac was on everyone’s radar, I wonder how many (who are currently suffering with mental health issues) would find relief through a gluten-free diet. (Nope, I’m not suggesting in any way that I believe gluten is behind every mental health issue, of course. But, as you can see in Gabe’s story, the impact a test, a diagnosis, and a diet change can have on a person is profound.) Doesn’t everyone who has celiac or nonceliac gluten sensitivity deserve to know they have it?!!
When you see “CD” in the article, this is “Celiac Disease.” When you see, “GS,” this is Gluten Sensitivity. And yes, it highlights the high percentage of people with nonceliac gluten sensitivity that are being affected and finding great improvements gluten free. Anxiety, depression, ADHD, autism spectrum disorders, seizures, schizophrenia.
Taking Responsibility For His Requirements
I always like to know how kids handle their strict food requirements. Honestly, the kids are usually awesomely fabulosa about it. Sure, they are human and have down times, but it is usually harder on the parents than the kids. (I didn’t say teens.)
Gabe sees life with friends more important than food. Oh how amazing it would be if we could all follow this young man’s example!
“My son handles it better than I would expect,” mom said. “He wants to hang out with his friends and not miss out on those experiences; he just doesn’t make it about the food.”
Mom continued, “About six weeks into his diagnosis (we went gluten free right after the endoscopy) he said to me, ‘My life is just as good as it was before I was gluten free!’”
I hope that comment made you smile. I know it does me.
One of "Those" Times
No matter how positively a person views their medically required dietary restrictions, however, there are are those times when having to be gluten free can cause some real sadness and frustration (no matter the age). For a parent, it is especially hard to have to be a bystander during those times when your child just cannot participate.
Mom shared their experience from one of these times.
“We had a really bad experience at a bar-mitzvah out of town and now I do my best to avoid them; it’s just not worth it.”
She spoke with the caterer weeks in advance. They communicated that they would be able to make a safe gluten free pasta dish for Gabe. ”We get to the party and the person I spoke to wasn’t even there, but I was under the impression that he had at least left instructions.”
“The party started with food stations as soon as we walked in, including one with all kid friendly food that looked and smelled delicious.”
This is one of the biggest struggles. The fun food. A social event. Being unable to participate. It’s hard for anyone–but when it’s your child–brutal! While those with medically required diets have to learn to accept the fact that we cannot expect to be able to participate in the food part of these types of events, having something to eat is a human requirement. And the grief over being unable to participate is a human emotion.
When Confidence is a Gamble
Those of us who need to be gluten free (or have a child that needs to be gluten free) get used to eating ahead of time, or bringing our own. Preparation is key. But what about those times when travel is required? Preparation isn’t always as easy.
Contacting a caterer in advance to inquire about the food being served, in order to determine if something will be safe, is very appropriate. I never ask for something separate to be made, but with the increase in allergies, caterers very often offer something safe. Education is increasing (although not quite where it needs to be–yet).
Mom asked about the food and was promised a meal. That is all any of us can hope for. And that is something any of us should be able to trust.
But what if something goes wrong?
A Difficult (and emotionally painful) Situation
Mom’s communication with the caterer left her feeling confident that Gabe would have something safe to eat. Since they were traveling from out of town, this was important!
She shared how things went wrong.
“They served the kids before the adults. A gorgeous kid friendly buffet with lots of delicious pastas with different sauces and all kinds of things. My son comes to me in the middle of the hora, the quintessential Jewish dance that they have at every bar mitzvah, and asks me where his meal is. I look around and all the kids are eating this gorgeous food, tons of choices, and there’s nothing for my son.
“I went to find the kitchen person who I spoke to when I got there. He brings out a plate of plain pasta for my son. It looked so unappealing. To make it even nicer, some stranger comes over to comment on my son’s choice of food, as if he’s walking around with a plate of plain noodles because that’s his preference.
“I stop another kitchen person to ask if there’s gluten in the tomato sauce. Gabe was able to at least have some sauce on his plain noodles.”
Oh how this makes my heart ache for both Gabe and for mom!
What About the Ice Cream?
“He didn’t complain about the food or the cakes and desserts that he couldn’t have.” But then he asked if he could have the ice cream. “He knows he can usually have ice cream as long as it hasn’t been cross contaminated.”
But the ice cream wasn’t safe. The scoop touched the cones as they were filled, cross contaminating the ice cream every time it went back into the container.
Samantha asked if there was a fresh container in the kitchen. Nope. If Gabe’s dietary restrictions were red flagged when mom called in advance– which they should have been–a separate dish of ice cream would have been prepared first and set aside, prior to contamination. Something that was naturally safe for Gabe was sadly made unsafe. And he was left out completely.
“When I went home that night I realized that I really had no idea if the pasta he choked down was even gluten free. I was trying to be polite and did not cross the threshold into the kitchen to watch what they were doing.”
Mom started to reevaluate and wonder how much those who catered the event actually understood gluten free. “Did they bring out a plate of plain pasta because they didn’t understand what I meant by gluten free and thought I just wanted an alternative to the delicious food for a picky eater? Did the head chef who I had spoken to on the phone not talk to anyone? Did my son have a miserable time and eat poison that he couldn’t even enjoy?”
Here’s yet another side effect: Mom guilt. Mom: You did an amazing job. You did all the right things. (I know I would have felt the same way, but we tend to beat our mom selves up too much too often.)
Gabe doesn’t let his dietary requirements get in the way of enjoying life and time with friends. The event above is an example of how important education is. It makes me super sad when testing is delayed and kids suffer needlessly. And it breaks my heart when kids are left out of social food experiences (especially when it was promised they would be included).
Trust is important.
Dear Catering Companies: If safe food cannot be provided, please be clear and honest. If you guarantee that a meal can be provided, however, we need to be able to trust that. Because kids like Gabe (and adults), are left without when things go wrong.