I will start this post by saying I’m not a doctor, I cannot diagnose anyone with a gluten sensitivity, a thyroid issue, or sensory processing disorder. I’m not telling you about a cure, I’m just sharing our story, and how going on a gluten free diet saved my daughter’s thyroid and drastically improved her sensory processing disorder. She is a completely different kid.

bread

Background: Kids and adults with Down syndrome are more likely to develop issues with their thyroid, specifically to have hypothyroidism. Part of the health protocol is to have the thyroid checked every six months. So for six years we checked my daughter’s thyroid every six months.

Last March, her thyroid results came back, and her TSH was over 5, which is high. For the sake of this post, we will simplify this and say that TSH is your thyroid hormone (and I won’t go into T4 and T3 because I am not diagnosing anything here nor is it my goal to explain thyroid function). But to give you an idea of what we were looking at, a “healthy” thyroid is between 0.3 and 3, although depending on who you talk to they might say no higher than 2.5, others say no higher than 2. You can google this to learn more.

Bottom line, we were looking at thyroid meds for the rest of her life.

A year before this, I met Joanna Puciata, she’s a health coach and had a sister with Down syndrome. Joana is passionate about helping kids and adults with Down syndrome live healthier and better lives. This was a result of watching her sister’s health deteriorate over the years (she died a few years ago).  I knew her sister had had hypothyroidism, so I called her up and said, “Joanna, guess what, it appears Nichole has hypothyroidism too.” She was silent for a moment, what she said next possibly saved my daughter’s thyroid and changed her life. I mean, it really changed her life.

“Ellen, get her on a gluten-free diet right away and see what happens. Most people don’t realize there is a strong connection between a gluten sensitivity and thyroid issues. Ask your pediatrician if you can wait on the medication just for a few months.”

At this point, I did not know much about food sensitivities, but I was willing to try it, because if I could get to what was causing the problems in her thyroid, I needed to do that for my child, for her health. So I called up her pediatrician, who agreed to give us three months to see if a gluten free diet made a difference.

I called her school and talked to her teachers and aides. I explained we were gong to try a gluten free diet. I would send all her snacks and she could only eat what I sent to school. I would provide treats and cupcakes for birthdays too. They were fully on-board and supportive. She has an amazing staff at school.

We began the gluten free diet on a Thursday, there was a long school break, and it gave us a chance to do it at home for four days before tackling school. On Monday, when I picked her up at school, her Kindergarten teacher said, “You sent me a completely different kid to school today.”

Here is where I tell you that my daughter also has sensory processing disorder. As a matter of fact, her sensory processing disorder affected her more than Down syndrome. We could hardly go out with her because she could not handle the sensory stimulation of loud places. I carried noise canceling headphones with me everywhere we went. We saw her disconnect from people when she was overwhelmed. She acted out and was defiant because her senses were overloaded. She was distant. She refused to participate in social interactions. It was especially devastating that our extended family did not know her, because every time we got together she was so overwhelmed by the noise that she hid away from people. She was terrified of babies because babies make loud noises and cry, they are unpredictable. She has lots of baby cousins. She struggled with textures too. SPD was hard! She had a behavioral plan at school because her sensory processing really affected her day to day activities and it brought up some behaviors that had to be addressed at school.

Once she was on a gluten free diet, she soon was cooperating during speech therapy (because she refused to participate in speech therapy for most of the year!) She was sitting and participating during class activities. She was listening. Eventually, we tried going out to eat at a restaurant again and she did not ask for her noise canceling headphones.

When we were working on her IEP for first grade, the comments were the same: she had really improved in her behaviors since going on the gluten free diet and it was obvious this was what had made a difference.

In June, we checked her thyroid again. Her TSH was 3.2!

“Let’s check her thyroid again at the end of the summer.” Her pediatrician said.

Last summer, at family reunion, everyone got to know my child. It was beautiful. My child, the one that hid from her cousins in years past, was now playing with them, laughing out loud, running around and enjoying her family. At the time, I had not even made the connection of her behavior and her thyroid and her gluten free diet. But it was beautiful, and I wrote about it.

being close

At the end of the summer, her TSH was 2.7!

At the end of the summer, I could not even find the noise canceling headphones.

“This is a pretty obvious marker that your child’s gluten sensitivity affects her thyroid.” The pediatrician said, “It’s pretty significant, this is for life.”

We ended up taking a food sensitivities test for official blood work and “diagnosis”, and as suspected, hers came back as having a severe gluten sensitivity. It also came back she had a severe casein and whey sensitivity, and we kind of knew that because she had issues with milk when she was younger, but we believed she had “grown out of it,” now we know that’s not actually a thing, your body just stops fighting it (but that would be a different post).

A few months ago, she ate a couple of regular cookies. I was not sure how it would affect her, but I knew it would. She had a horrible day at school. She dropped to the floor and refused to cooperate, she was defiant and threw her homework on the floor. She would not cooperate during speech therapy. Her first grade teacher was flabbergasted, “I’ve never seen her like this!” She said.

“She ate gluten.” I said, “This is what life used to be like for her… every day.”

We let that sink in for a minute.

“She might be difficult for a couple of days, until it gets out of her system.” I said.

Sure enough, it lasted just two days. She was soon back to her regulated self.

Your thyroid affects so much of what happens in your body. I have a new child, she has a new life.

I am a big believer now that food sensitivities affect our health in more ways than we know. Health starts in our gut, it’s so true.

Joanna has helped our family make changes, she walked me through how to do the transition, how to plan and organize meals, even suggested supplements to help heal Nichole’s gut (and the rest of the family). If you need a health coach, I could not recommend her enough, check her out. And just so you know, I get noting from referring her to you. She has no idea I’m writing this or that I’m writing about her (although she will once I hit publish, or if you leave any questions about this, because she is much more qualified than I am to answer anything related to this).

Like I said, I cannot treat or diagnose, always, always check with your doctor, but if you have any questions that I can help with, ask away.