Frustration!

Finally.... An update on Gluten-Free with Jet. A lot has happened in the past couple of months. I won't bore you with the nitty gritty details, I'll just jump right into the meat of the story.
Our goal in going Gluten Free was that Jet would start functioning at a level closer to a 3-year-old. We have absolutely seen improvement in him, no doubt about it. However, the change has not been huge. My sister tells me it'll take around 6 months and we're somewhere around 5 months. If we see that huge of a jump within 1 month, it will be a miracle.
So has the Gluten Free caused the improvements or has the intense therapies and preschool caused the improvements? (Jet got accepted into the 3-year-old program at Ranch Heights - 4 days a week.)
Honestly, I don't know. I would like to think that the Gluten Free has helped.
So you ask, "Why don't you just take him off the Gluten Free?".
Well, here's the reason.
Jet has ran into a couple of instances with gluten in the past couple of months. And by that I mean, 1 small graham, 1 cracker, 1 pretzel... Nothing that has been a huge amount of gluten (that I know of).
All of these small instances have led Jet to be in SEVERE pain. Several hours after ingesting the gluten he'll start out with "amazing" gas, but by hour 24 he is in unbearable pain. Literally, no Exaggeration, he'll scream and hold his belly ALL night. He grinds his teeth and tosses back and forth all night long. He might fall asleep for 30 minutes and then he'll wake up and scream again for around an hour until he passes out for another 30 minutes. And to top it all off, this lasts for around 7 to 10 days!!!! Also, during this time his poop becomes very "sandy". I know that sounds weird but it literally looks like he's eaten sand. Jet is our happy, easy going baby that loves his sleep. He ONLY acts like this after he's been exposed to gluten.
We did discover after the pretzel incident that pepto does wonderful things for him. It's obvious that he's still in pain, but it does make it bearable.
Before starting the gluten free diet I contacted his GI and his pediatrician. Both thought that it would be worth a try and definitely couldn't hurt anything. His GI did tell me that in order to do a blood test to test for celiac he would have to go back on gluten for 6 weeks.
Because of Jet's horrible reaction to gluten, I decided that it was time to do a biopsy of his upper intestine. This type of test is a more accurate test for children than a blood test.
I called his GI to set up the appt and they informed me that they never suggest that people go gluten free before being tested for celiac because they have to be on gluten for at least 6 weeks before ANY kind of testing can be done. This was the same person that told me to go Gluten Free with Jet. I very calmly exclaimed... "BUT YOU DID SUGGEST THAT WE GO GLUTEN FREE AND NOW WHAT AM I SUPPOSE TO DO?" She didn't respond.
I melted myself into a little puddle after that phone conversation. In order for Jet to be officially diagnosed with Celiac - I have to quite literally torture him.
Nope - not this mama. I WILL NOT do that to my baby!!
So now we wait. We have an appt in April to meet with what will hopefully be a more competent GI.
Here are things that are positive that I know came from Jet going Gluten Free. He doesn't spit up at all anymore. His acid reflux is all but gone. We haven't tried reintroducing cow milk - but he can drink Sprite, Juice, and Kool-Aid. Right after going Gluten Free he grew a good inch if not more. His belly isn't near as bloated as it was.
We have discovered that everything has gluten in it.... Detergent, Shampoos, Lotions, Sun Screen, EVERYTHING!!!! I read the labels on everything now. So that has been a challenge. A couple of weeks ago we found out that the pepper that we had been using had gluten in it - Crazy!!
At this point I feel comfortable in saying this with confidence - Jet has an obvious Gluten Intolerance, maybe even Celiac. What I can't say with confidence is - The Gluten Intolerance has caused his global delay. At this point, time will only tell.
I'll be better about updating everyone - I promise.