We’re back! We spent the Summer going to ALL the appointments. We saw a Neurologist, had blood work run, got a diagnosis for CAPD, and Visual Processing Disorder. We bought Sara hearing aids, glasses, got her legally recognized as having an invisible disability by the government and decided to focus on trying to create a new normal. After a few months of feeling sorry for myself and being mad at the world because there was no more that I could do to help Sara, I gave myself an attitude adjustment and decided to have one more kick at the can and put her on a 100% Gluten Free diet.
Only a quick google search made me realize that Gluten Free is technically not just Wheat free it is also Rye and Barley free also as they are also sources of Gluten. Ok. Minor setback. How hard can it be to avoid Rye and Barley?? By the way that is sarcasm as I now know that Rye and Barley are hidden in a lot of foods. Oh well no need to dwell on the negatives!
As I was saying…a quick google search educated me about Gluten. It also kept showing search results that always included the word “celiac”. It was EVERY where. Eventually curiosity got the best of me and I needed to know exactly what was CELIAC? So “click…down I went into another rabbit hole of information.
Interestingly the first thing that popped up was the “Top 10 symptoms of Celiac”. Perfect! Celiac for dummies. And then I almost fell out of my chair…Sara had 9 out of 10 of them. The only one she didn’t have was #10 – No symptoms. Apparently there is such a thing as “Silent Celiac” where you have no symptoms but all the internal damage and destruction of regular celiacs.
To say that I was shocked is an understatement. I always believed that Sara had issues with Gluten I had no idea of its vast scope of symptoms. In fact here is a link to a list of over 300 signs and symptoms of Celiac. Further digging uncovered the fact that there is also a condition called Gluten Ataxia which is characterized by some of Sara’s most pervasive and troublesome symptoms. Things like difficulty swallowing and coordination. This is a condition where the Gluten antibodies that are produced also attack the cerebellum. If left untreated the condition can progress to irreversible brain damage.
That was VERY motivating and we immediately went Gluten Free the very next day! It hasn’t been easy. We have already made so many rookie mistakes and I am still learning every day. But at only 7 weeks in I can tell you the changes are profound and for the first time in a LONG time we have hope again that we can cure Sara. Stayed tuned for blog posts that reveal our progress, our mistakes and all the tips and tricks I have learned so far!