A happy update!

[Mermaid's Mom]

We are only 6 weeks into being Gluten Free and the improvements in my daughter are astounding!  Truly shocking. 

Biggest improvements are definitely in brain fog,  fatigue and pain.  She is one month constipation free and laxative free!   It seems to have completely resolved itself!

I have no real way of knowing if she is having improvements with her Visual Processing Disorder....but it *appears" as though her Auditory Processing Disorder is mostly resolved.  She hasn't worn her FM system in a month and we no longer have to repeat ourselves.  She had a friend here today and the friend asked why she was gluten-free.  We explained that she is intolerant and Gluten makes her sick.  I explained it a bit and asked if she noticed that my daughter was different lately.  She said "YES!  Now when I talk to her and my head is down she actually answers me!".  I almost cried!

Yesterday I bought a slackline (essentially a tightrope you string between trees) and in 23 hours she learned how to balance and take 4 steps on it!  Typically she has horrible balance!

She still has nausea at bedtime ( I think it might be from the Magnesium) and she still gets minimal heartburn etc.  She still goes into school late everyday but her energy in the evening is OFF the charts! 

She is also sleeping better at night and reports that she has ZERO issues with swallowing anymore - though I think that resolved prior to going gluten-free and in part due to months of B12 injections!

We have real hope that we can resolve most of her issues!  I would say she is almost 50% of the way there in only 6 weeks!

[marren27]

Happy news to hear of your daughter's drastic improvements! You must be a proud mom!

[Jmg]

3 hours ago, Mermaid's Mom said:

We have real hope that we can resolve most of her issues!  I would say she is almost 50% of the way there in only 6 weeks!

Fantastic! It's always nice to read of good outcomes, thanks for sharing 

Reading these sites it's easy to focus on the negative, but the reality is that for most of us the gluten free diet delivers the single biggest boost to health and well being it would be possible to imagine. It's great for you both that at 6 weeks you have tangible results which will help you both stay the course and hopefully see lot's of improvement or indeed resolution to remaining symptoms.

I'd suggest maintaining any diary or records you're currently keeping and perhaps supplementing with photos or videos. As time goes on there may be a temptation to stray from the diet, so that evidence may be useful at some point?

 

[Mermaid's Mom]

4 hours ago, Jmg said:

Fantastic! It's always nice to read of good outcomes, thanks for sharing 

Reading these sites it's easy to focus on the negative, but the reality is that for most of us the gluten free diet delivers the single biggest boost to health and well being it would be possible to imagine. It's great for you both that at 6 weeks you have tangible results which will help you both stay the course and hopefully see lot's of improvement or indeed resolution to remaining symptoms.

I'd suggest maintaining any diary or records you're currently keeping and perhaps supplementing with photos or videos. As time goes on there may be a temptation to stray from the diet, so that evidence may be useful at some point?

 

Thanks!!  I have actually kept VERY detailed logs and videos over the past 3 years.  I have videotaped her therapy  sessions where she struggled to use her foot to tap the floor.  Where she was unable to cross the midline.  I have compiled over 400 pages of documents from everything to what she said and did to what rabbit hole I was currently chasing for answers.  It started out as a way to track her progress but eventually morphed into the rough outline of a book that I am co-writing with her OT.