The truth.


So yesterday I told you how successful going Gluten Free has been.  Today I am going to tell you all about how badly it is failing.  Confused?  Let me explain…

Like I said in yesterdays post after only a few weeks of being GF the change in her has been profound.  Prior to being GF,  Sara was barely function from the fatigue.  She was confused a lot and the term “brain fog” suited her well.   She was hyper sensitive to smells, clothing, textures.  She couldn’t always tolerate her bedding or her shoes.  She had difficulty swallowing, sleeping, focusing, pooping, learning, socializing, coordinating her body, thinking of the right words, following instructions etc.  She had major issues with her hearing and we often had to repeat ourselves and get her attention before we spoke to her. 

When we eliminated gluten my hope was that we would *fingers crossed* just get her off the damn laxatives!!  I swear I would have been happy with just that alone.  She had been on laxatives for a decade and nothing ever seemed to work.  We tried everything.  We increased fibre, decreased fibre, increased water, decreased dairy, tried probiotics, massage, supplements.  Going GF was our last desperate attempt.    If ditching gluten ALSO helped her focus in class, or give her a bit more energy that was just the icing on the cake.

So I was thrilled when one week in the stomach aches had gone away.  I thought this was a good sign that her digestive system wasn’t so “gummed up”.  The next week…it was obvious that her brain fog was less “foggy”.  Nothing major but we all noticed it.  The third week everything started to improve – her energy, her skin, her sleeping, her foucs.  It was crazy.  There were so many improvements we didn’t even digest them all as they happened.  It took me at least another full week to realize that she had had perfect hearing for the past few weeks.  No need to repeat anything.  I also realized that not once since she went GF did she complain about things being too loud, too scratchy etc.  Not one morning where she spiralled because nothing felt right to wear.  Not one moment where she clapped her hands over her ears desperately trying to block out the ice maker, or the hair dryer or my coughing.

But, the fatigue leaving was the thing I enjoyed the most.  She was so fun again!!  She used to spend each evening in her therapy room not speaking to people.  Her face looked exhausted all the time.  Her eyes were always so heavy.  Now she was out back chasing her brother around the yard and begging me to do mini-facials with her at 9pm at night.  It was so shocking that I wondered if people would even believe me.  I was afraid to even talk about it too much because I was afraid I would jinx it somehow.  Each night I would watch her LIVING life again, running, laughing and returning to the little girl she used to be and I literally wanted to fall to my knees in gratitude.  But I was so scared that it would all be taken away.  

And then…it was all taken away.   It was slow.  It crept up on us gradually.  We had already become accustomed to her hearing us normally, so it was odd when one weekend (at  5 weeks in) I noticed that I was repeating myself to her a LOT.  Her hearing was awful.  On Sunday I finally mentioned it out loud and my son agreed completely.  He had noticed the same thing.   In his words – “It’s soooo bad again!”

The very next day I noticed her energy was not as high as it had been.  By dinner that night I was worried.  I discreetly mentioned it to my husband while she had her back to us at the stove.   I said I was worried that the fatigue was back.  When she turned around I almost cried.  There she stood with her heavy eyes and vacant, expressionless face looking back at me.  I was so confused about what was happening.  It went downhill from there.  The next day she spilled two microscopic drops of cold water on her pants and it sent her into a spiral.  Later that night, I turned on the vacuum and her hands flew up and clamped over her ears, her face twisted in pain from the noise.   I knew then that we were losing her again.

I panicked.  I knew she must be getting gluten somehow.  I started dragging bottles out of the fridge and reading all the labels, I started obsessing about whether or not she ate something at school.  I had no idea!  The next day the stomach pains were back.  Then she admitted that she was having a hard time swallowing, all while scratching her scalp so I knew her rash was back again.   It all started to fall apart right before my eyes. 

Then it hit me.  The Cheerios.  IT IS THE CHEERIOS!!

A week before I decided to allow her to start eating oats again.  I bought Gluten FREE Cheerios.   I had read that there was some controversy surrounding Cheerios.   General Mills and the Government consider Cheerios to be 100% GF and says the product meets the industry standard of less than 20ppm of gluten to get the Gluten Free label.  But, I also knew that the celiac community SWEARS that they keep getting sick from eating them.  I researched the “myth” concluded that it was a safe food and that some people (real celiacs!) were obviously just very sensitive.  Not my Sara!  She was doing so well there was no way that some Gluten Free Cheerios would be a problem.

So she ate Cheerios.  Probably 4-5 bowls over 6-7 days.   She showed no immediate sign of being bothered by them but now it was evident that she had slowly been being “Glutened”.   Here we are almost 10 days later and she is just now starting to come out of the fog. 

So no, going GF has not been a complete success.   I have made many mistakes and will make many more.  Of course I am terrified that it isn’t the Cheerios, that there is something else that is in her diet that is poisoning her.  I’m scared that she is not going to bounce back and that we will never see those results again.  But I am happy that we now know it’s true, that we didn’t imagine all that success.  That it was real and she was here again.  I know we will detox her and get her back and learn from this.   For now Adios Cheerios!


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