Sensory Is Gone Again, it’s not gluten

So now I’m puzzled because the symptoms went away several days after they appeared

Olive Garden 2012

Olive Garden 2012

and I thought it was because we continued the gluten-free diet. But now I’m not so sure.

We had to attend a funeral this past week which was followed by dinner put on for the family and friends. We had been out all day with the funeral proceedings and I had brought my son some snacks. We already discussed that there probably wouldn’t be anything we could eat at the dinner.

Well, despite my best efforts by the time we had arrived at the dinner, it was 1pm and my son was starving. He ate breakfast at 9am but normally he hast eaten lunch by now. They didn’t bring out any food until after 2pm which aggravated the situation. When they did he decided that he was starving and there was nothing I could say to convince he shouldn’t eat any gluten.

He ate a large plate of pasta and sauce. I stuck with the vegetables and fruit that should have been safe. I encouraged him to try to avoid it as I was doing. Which turned out not to matter because I got sick anyway. I might as well have eaten the pasta!

Within 20 minutes I could feel the nausea and the brain fog so I took some activated charcoal which I carry in my purse in case this happens. My son happily gobbled up what I feared would be a nightmare for him later on.

I waited anxious the following worrying the sensory would come back, Each day we checked to see if his sensory reappeared but it’s been a week, and it hasn’t.

I really don’t know what to make of that. I mean I am super happy it didn’t cause a flare up but it leaves with me more questions.

Would it return if he ate gluten regularly? Why did it return after that one infraction but not this one? What else could have triggered it that time he ate the fries that is also in gluten foods? I can’t find a common ingredient that is in all the gluten foods we removed that would also be in fries. It’s not adding up.

I am reluctant to take him off the diet because he’s eating so much better on it. I fear that if he were to eat gluten daily, then it might bring back the sensory, but then again I’m just not sure yet.

I hope in the next few months I will have more answers but for now we are just glad to be sensory free and have survived a major gluten challenge!


Sensory Regression, possible gluten infraction

I reported that on January 27th my son finally overcame his sensory symptoms to paper.

Well that was a good rid while it lasted!!

I’m not sure what happened and I’m not happy to report that today it returned and he noticed it when it was time for his copywork/printing worksheet.

While this is a bummer, I guess it will help me sort out what actually made it go away since I’m not sure what was causing it to begin with.

This is our progression of interventions that led up to curing it:

  • Flower essence: Been on since Oct. 29, 2014 and didn’t have this gain until after the round done on January 29th and gluten-free diet.
  • chelaton round: January 19th
  • gluten-free diet started: January 16th.

Normally we don’t start more than one thing at a time but rounds haven’t done anything for sensory since 2009. So those are really not a new intervention. Neither are the drops he’s been taking for months. I wasn’t planning for my son to be gluten-free…that was his idea. But that was really the only new thing we had done that I could attribute to such a dramatic change.

So that has me thinking did my son get gluten contamination in the past few days?

I wasn’t sure because I make almost all of his food at home but he did have grilled chicken at a place we know is gluten-free and we have eaten there many times without incident.

Since he doesn’t seem to have any symptoms when eating gluten aside from sensory disturbances, it’s not easy to tell if he’s gotten something accidentally when eating away from home. Where as I will know in 20 minutes if I ate something with gluten in it. I will feel like vomiting, my head will hurt and I will feel just terrible.

Well when hubby got home from work tonight I was talking to him about our setback and he reminded me of the french fries my son had on Saturday night that may have been contaminated. We have not bought them in a while and I think that’s where he would have been glutenized.  I had completely forgotten about the fries!! Yikes!

We won’t be eating those anytime soon!

If a gluten infraction caused the setback, then it should fix itself by avoiding any further gluten contamination. I will report back once I have confirmation!

The Gluten Experiment and sensory

Copyright 2012 The Edge of Autism

Copyright 2012 The Edge of Autism

On January 17th my son announced that he wanted to try my diet. He wanted to be gluten-free and learn about what foods he could have on this diet. He said wanted to try it for a week and see how it goes. And if he liked it, he would continue it.

Now I almost fell over because previous attempts to have him try this diet were always difficult and resistant.  I’ve been gluten-free for about 5 years now and for me it’s just the way I live. I don’t think much about it anymore, its second nature now and all the meals I have been making at home have been GF for several years. So making this leap for him would involve some changes but nothing as drastic as what I endured when I went on it.

We had tried a gluten-free diet for him in the past because I wondered if it might help his sensory symptoms. Every time I researched sensory dysfunction on the forums that’s one of the things that seemed to help the most stubborn cases. So it isn’t that I wasn’t aware of it, it’s that I’d been duped!!

And by this I mean the previous attempts at a gluten-free diet didn’t show any results because as was revealed to me recently……he cheated! In fact dad and child both admit to sabotaging the gluten-free diet when we had tried it in the past. So my son had not actually been 100% gluten-free at all. He was sneaking cereal and dad won’t admit what he might have contributed to this but I suspect they are both guilty!!

So……this time, it was my son’s idea and decision. I supported his decision but in no way have I made him follow it or said that he had too. He knows it’s his choice. What I have done is supported him by helping him learn what he can eat or can’t. Making sure we have plenty of options in the house for him. Making him delicious gf treats helps a lot when you first start out.

Two weeks on the diet and on January 27th my son reported to me that his tactile defensiveness to paper was gone. Absolutely GONE! He wasn’t getting any tingling or zapping feeling when he touched paper.

He has suffered from sensory symptoms since infancy and they became life altering by the time he was a year old. Things were so bad he didn’t wear clothes in the early days.

Chelation helped a lot of it but we were always left with this one residual sensory problem which was tactile defensiveness to several things. (paper, wood, tissue, napkins)

In fact on Saturday we took him out for dinner at a local organic place for some gluten-free penne with marinara sauce and for the first time since he was a baby we were able to sit down to the table and have a normal meal.

In the past we would always have to quickly remove any paper or napkins from the table as soon as we sat down because the look and feel of them bothered him so much.

This includes menus folks… we had to be choosy about where we went.

And we have had many places we have had to walk out of due to noise, paper table cloths and things like that. Not fun.

We would eat our meals with the napkins on our laps and watching constantly because waitresses would always bring a new stack thinking we didn’t have them. Some places got to know us and knew not to do this. Mostly though it was a tactical mission on our part to avoid more napkins or quickly remove them from the table and inform our server that we wouldn’t need anymore.  Leaving the results in a child hiding under the table or covering his eyes and ears curled into a ball. Further leaving them resulted in a melt down. As he got older we learned and we were proactive to avoid this.

And can I just tell you how terribly difficult school work is for a child that cannot write on standard paper? Every project had to be modified to avoid the use of paper or to use the only type of paper in thee world he could stand. That was finger paint paper. It’s thick, glossy and doesn’t crinkle. It took us a long time to find this one sort of paper that he could tolerate and from that point on we printed lines on it for school work or used it for writing, projects etc.

When he started need to use paper more in school in 2nd grade I took him to an art store and let him feel every kind of paper they had to find one he could stand. And thankfully…the finger paint paper was it. So I ordered a ton of it from an art supply company and ran it through the printer to make worksheets, writing paper etc.

But alas…finally…….my search to cure the sensory dysfunction seems to have shown itself to us.

Gluten. Evil gluten.

Here we are on February 3 and his symptoms have not returned.