Today was our annual visit to Annapolis, MD to meet with the folks from Pfeiffer Treatment Center.
I told the doctor that we were off of the gfcf diet now. It seems like my son actually weaned himself off of it– occasional “cheats” and finally just quitting altogether. This is what I found out:
The diet is apparently not meant to be life long. It is to be done until the symptoms of leaky gut are gone, and the intestines have healed. Signs that the diet needs to continue: return of bowel issues and return of the symptoms the were present before the diet was begun.
That’s pretty much it.
Not feeling so “light” today. We are really tired. We both had trouble sleeping last night. We probably both got around 3 hours, versus my 7-9 and his 9-10. He’s also been off of his supplements / regimen for over 24 hours, and is off the wall– stimming like crazy! So the supplements do indeed work. They are too many to mention, and we are going back to compounding this next time so he has fewer pills to swallow. To top it all off, the reason he’s off of his supplements is due to the lab work he was to have done today… which didn’t happen, so I’m extra frustrated. Also, we think that his yeast issues have returned (which explains his carb feeding frenzy), so a really fun stool test will happen in the next couple of weeks. Yay.
Ah, well. At least we know that the sky is not going to fall because we stopped the diet, and that the supplements are working. And if he does have yeast issues we can deal with that. There’s the lighter side. (Glad I found it!)
Autism From the Lighter Side 
Posted by bbsmum on March 16, 2011 at 3:32 am
Tough for him, but interesting for you to be able to see what works and what doesn’t. Will you reintroduce the supplements one by one to see which ones are helping, or doesn’t it work like that? (We’ve never done supplements so I’m ignorant, sorry!)
Posted by Elizabeth G. on March 16, 2011 at 8:32 am
We simply resumed the supplements shortly after I posted. He gets melatonin in the ones he takes at night, so we got a good night’s rest 🙂 .
Also, he was displaying symptoms of that darned puberty (talking back, some regression, etc.) and the dr said that since he’s been off his zinc for a few weeks (we ran out and didn’t get refilled) these symptoms can be aggravated. So we resumed his zinc as well. The zinc is in an expensive supplement available only from Pfeiffer Treatment Center, not our local stores. I was waiting to refill that one until I talked to them. Sometimes they change up a lot depending on the visit. Didn’t want an expensive supplement laying around unused!
Posted by Trish on March 20, 2011 at 4:25 pm
I have been wondering about this as well for us – after six years on the diet, it would interesting to know if Michael could eat some of the foods again. He does get some chocolate here and there, but I haven’t truly tested things.
Thanks for sharing!
Posted by Elizabeth G. on March 21, 2011 at 9:18 am
We did it for 5 years. The only downside now is that Philip is really enjoying his new found freedom and we are running out of snacks. Just reminds me that we still need to focus on healthy… especially now that ice cream and cookies are no longer off limits… 🙂