In December 2014, my daughter (10 at the time) was no longer able to swallow food. Prior to that there were issues with anxiety and sensory things but the inability to swallow was what started the nightmare.
Just a month before that she was diagnosed with ADHD though she had been a stellar student until that year. The journey to find someone to help her swallowing issues wasn’t easy. Most medical professionals believed it was an eating disorder and/or anxiety. Thankfully we found a STELLAR Occupational Therapist who immediately knew what was wrong with my daughter and we received the diagnosis of Sensory Processing Disorder. There was no question she had sensory issues. From a very young age we noticed that she hated socks and loud noises etc.
She did intensive therapy to learn how to swallow again followed by 1.5 years of food therapy where she learned to enjoy eating food again. During that time she really started to decline neurologically. We noticed some abnormalities in her movements and coordination and we uncovered how disorganized her brain was in terms of gross motor movement. At that point she was also diagnosed with Dyspraxia.
School became increasingly more difficult. She was having issues with memory and focus. She was also having issues with her vision and she was diagnosed with Visual Processing Disorder. Soon after we noticed that her hearing was NOT what it should be and that we were constantly repeating ourselves. We took her to be tested and sure enough she was diagnosed with Central Auditory Processing Disorder. Her hearing test revealed that she had better than average hearing but her brain was scrambling the audio. She scored only 40% comprehension in one ear and 65% in the other and was fitted for assisted listening devices
Again one more piece to the puzzle – and yet I was now starting to realize that she didn’t have ALL these things wrong with her!! No way! They were the symptoms of something bigger. So I began to research and understand SPD and Autism. Lo and behold it is very poorly understood and when you really break it down it made sense that all of her sensory systems were struggling. I became somewhat content that we had peeled back the onion as far as it could go and that anything that was still “unresolved” by the diagnosis of SPD was just unexplained as of yet.
Then, in June 2016, she was struck by Vertigo and started having mobility issues, numbness in her extremities and difficulty with balance. By now we were seeing a Neurologist – in a quick period of time her condition deteriorated to the point that was avoiding using stairs, swimming or standing for any period of time. She was chronically fatigued and SPD didn’t explain why. Or why it was getting worse. We began to suspect a rare type of CP, MS and a host of other scary illnesses. The brain fog and confusion that she drifted in and out of made her un-teachable. She had days with great clarity and then days that she was unable to answer 5-6 word questions. “Do you want chicken or pizza for dinner?” had to be broken down and explained further. We were confused all over again.
The Neurologist performed numerous tests but ultimately determined that from a Neurological perspective that there was NOTHING wrong with her. He said that what she is reporting as her symptoms are neurologically impossible. Nor do they correlate with any degenerative diseases. That what she was experiencing was the result of being gifted AND having one or more brain based disorders (she was now officially diagnosed with MANY) and on a whim he ordered blood work to check for B12 levels and Iron. And they came back as deficient. We immediately began B12 injections and Iron supplements and noticed a slight improvement in her energy.
So in total she was diagnosed with (in order): Chronic constipation, anxiety, insomnia, ADHD, Dysphagia (swallowing) SPD, OCD tendencies, Dyspraxia, Visual Processing Disorder, Central Auditory Processing Disorder, Gifted, Vertigo, Low B12 and low Iron.
At one point there were no more tests we could run, no stones left unturned. I had dedicated 2.5 years to bringing my daughter back to the girl she used to be and I was faced with the reality that I now had to stop trying and start to create a new normal. There was no cure, no medicine, and no surgery to help her. She would have to learn coping skills and strategies as she aged to compensate for her issues. Her education was modified. Some of her issues are considered invisible disabilities and we successfully applied to have her recognized as disabled and as such she shares the same legal rights and protections of all disabled persons.
In Sept 2016, she started grade 7 in a new school and initially it was overwhelming but promising. The B12 and Iron supplements were helping with her energy and she was making so many new friends. It felt like – this will be OK. We can make this work. But four months later I no longer accepted it. Just like before the fatigue crept up slowly and insidiously. If she went to a sleepover on a Sat night she was bedridden for 3 full days as a result. She was so confused at the new school that she needed to be assisted to get to classes as she couldn’t remember where anything was. Her condition was declining once again. By December 2016 she was no longer engaged in daily life. She missed exorbitant amounts of school and the fatigue stole her from us when she was home.
I remember sitting in an IEP meeting where they discussed the “new plan” to modify her entire education so that she could “keep up”. They were going to strip back almost everything to make it manageable for her. I was so grateful and so angry all at the same time. She was tested as reading at a University level and was so bright but it was so unreliable and lately she was confused about basic daily living. I knew that something was slowly stealing my daughter and that I had to stop it. I also knew there was no one that was going to help me so I decided to have one more kick at the can and try the ONE thing that I had wanted to try for years but was unable to because of her eating issues. I decided to feed her 100% Gluten Free.
No sooner did I start researching Gluten Free when I stumbled across the top symptoms of Celiac and read about my daughter: Constipation (or Diarrhea), Severe Fatigue, Brain Fog, Deficient in B12 and Iron, Stomach Pain, Headaches, Numbness in hands and feet, ADHD, Learning Disabilities, Lack of Coordination. More importantly I learned about a condition called Gluten Ataxia.
What is gluten ataxia?
Well…ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements. A person with persistent ataxia may have damage in the part of the brain that controls muscle coordination – the cerebellum. (Source: Medical News Today).
Gluten ataxia occurs when the antibodies that are produced in response to the ingestion of gluten attack the cerebellum. Left untreated, the condition progresses, causing irreversible brain damage.
At only ONE month in the difference was astounding! Her brain fog almost entirely lifted and she no longer had difficulty with auditory input. She also stopped wearing her FM system and we are not constantly repeating ourselves. Initially, she just had no more stomach-aches but then a week later the brain fog just went away. She seemed to consistently be more alert and engaged. The next week the fatigue lifted. There were dips but she had more good days than bad. In only 4 weeks she was a completely different person. It is like someone reached inside her and turned a switch back on. Being 100% Gluten Free is the only treatment and apparently whatever is still present at the 2 year mark of healing is not going to resolve and is likely permanent so we know we have a LONG road ahead of us. But we are looking forward to sharing our journey with you and hope maybe our sharing will help other families.