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.
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.
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.
I don’t have a question, but I do have a comment. I just want to tell you THANK YOU! Thank you for being so honest and open about your journey. My AJ is only one, but I’ve been wanting to educate myself as much as possible, as early as possible. Again, thanks for sharing your story.
Thank you Jessica! I will tell you, if I could start when she was little, I probably would do a gluten free, dairy free diet. Now I know why so many parents who have kids with Down syndrome do this right from the beginning!
I love this post!! My kid has a brain injury. Give her junk food/too much processed foods and she loses weight/ sickness flares up/behavioural goes through the roof. Food has a lot to do with our health! Thanks for sharing your story!
Candice, brain injuries are linked to many Leaky Gut disorders. It has been proven with sports injuries and now paid attention to in sports medicine and functional medicine.
I wonder if a GF diet would help with sensory issues in people with autism. It would be pretty cool to find out it was that “easy”.
Vicki, I hope some people see this and comment, I can’t give you an answer. But, I can tell you that I know of several parents of kids with autism who say they saw improvement when their kids were on a gluten free diet. I think Jenny McCarthy even wrote a book about it, so that theory is definitely out there and it is worth giving it a try.
I can tell you from my experience caring for a severely autistic child. Going gluten free, dairy free. In fact following the auto-immune paleo protocol the child went from a squawking, screaming, flapping, lights on no one home child to a cheerful happy child who ran and climbed, fed themselves, said a word here and there, responded to simple commands. The list goes on. It was a very slow and gradual change but amazing.
It can help with some kids, but unfortunately not all. My four year old with autism calmed down immensely after going gluten free. He was severely aggressive towards his sister and that completely stopped. He is still however sensitive to noise and over stimulation, it’s his response that has changed due to the diet. He copes better and has the ability to walk away. My 6 year old with milder symptoms of autism had no obvious behavioral or sensory changes at all after going gluten free, but he already had better coping skills than his brother. I believe that the diet has allowed them to think more clearly, which has improved their reactions to things that bother them rather then actually making the SPD symptoms actually disappear.
With autism, one needs to not only look into the dietary and lifestyle changes, but organ detoxification, especially from heavy metals, like mercury. Unfortunately vaccination and environmental pollution, as well as GMOs play a huge role in body’s toxicity. While there are easy protocols for adults, there are less obvious dosages of specific children detoxifying herbs. Spirulina, chlorella, parsley and cilantro are the most common ones and can be simply added to the diet. They bind with toxins and escort them out. Ghee is used in Ayurveda to transport heavy metals stored deeply in tissues and brain (yes, brain tissues). These are all doable things for kids. Fiber is crucial, without fiber toxins float in the bloodstream looking for it, go back disappointed to the liver, get dumped again into the bloodstream and repeat this process over and over again until adequate fiber supply is found.
We are having a retest of our sons thyroid in the morning… He has autism and for all these years I have not wanted to change the way he eats… But now.. I’m gonna give it a try.. It seems overwhelming but we can do all thing through Christ who give us strength! Thanks for the post.. I needed it!
Monica, It does feel overwhelming at first, but, it gets easier! So many places now have gluten free options. I HAD to get gluten out of my house so we would not cheat. No I can have all sorts of gluten things and it is not a temptation. The one time I cheated was Friday at Starbucks, the Batista accidentally put whipped cream in my drink (we are also dairy free). It was so delicious! but my whey issues are mild. My daughter on the other hand, has severe sensitivities to all dairy and gluten.
I am curious. How did you figure out your daughter had a thyroid problem? My daughter is 8 and we’re thinking she has a thyroid issue. She’s gained a tremendous amount of weight, her behavior has spiraled out of control in the last few months, and her sensory issues are worse than they’ve ever been. We had been a GF house but I’ve allowed her gluten over the last few months too when she’s out with friends. Just trying to connect the dots and figure out what’s happening with my girl. (we are headed to the doc on Monday to ask for blood tests)
Cindy the blood test is what alerted us of thyroid issues. Once we removed gluten her numbers returned to normal and have stayed that way. The thing with gluten is that even if you do it once in a while, it still causes the same damage, so she cannot have any gluten at all. The times she has gotten gluten (because we went to someone’s house and we did not realize she grabbed a cookie or something) we see the behaviors immediately and they last for a couple of days. My oldest, who is verbal, feels very sick (and neither one of them have Celiac, but they have severe sensitivities, which our doctor says should actually be treated as allergies). but yes, make sure to ask your doctor t check for her thyroid, and not just the TSH, but ask for Free T4, Free T3 and Total T4 and Total T3.
Thanks so much! I just wondered what led you to test her thyroid to begin with. My daughter is only 8 and this is not a test you normally run on a child. My daughter does have a long family history of thyroidosis in me, her aunt, and great aunt. But, none of us showed symptoms until adulthood.
Cindy, my daughter has Down syndrome, so she has had get thyroid checked at least every year because hypothyroidism is common in Down syndrome. Interestingly enough, so is Celiac, so I think the gluten/thyroid connection will become more and more clear as time goes on (there are studies that prove this connection, but it has not yet been “embraced” by many medical professionals).