OK, so the title is kind of random, but it's been a long meandering journey and I would like some insight from those that have more knowledge than me or things that I may just plain missed.
Pat (Wuwei) directed me over here and I have spent some time this evening making my way through some of the links she kindly put up for me on a thread that we took OT lol. I have decided to post here in the meantime while I continue to read.
Back history - DS has just turned 6. When he was 2.5 he was diagnosed with coeliacs disease via blood tests. We opted out of the biopsy, and the GF diet took away all the symptoms he'd been presenting. So we carried on like that for 3yrs and in that time I radically changed the way we ate (not that we were that bad, but I pretty much started cooking a lot more from scratch, and switched to GF pasta, bread and cereals and any other gluten sources were exchanged for an acceptable food). We don't vax, he'd never had ab's or panadol or any medicines aside from homeopathic.
Then in December just gone (he was 5.5), completely out of the blue we ended up in hospital with DS being diagnosed with Nephrotic Syndrome (basically his kidney's weren't functioning correctly and he was peeing protein and swelled up an extra 5kg in water weight). NS is another autoimmune disease and often triggered by an allergy or reaction of sorts. the most likely in DS's case was a bunch of mosquito bites (it was summer here). So anyway, this was an emergency situation with no time to research or do anything and he was put on high-dose corticosteroids (50mg/day) and went into remission within a few days and stayed at the high dose for for 6wks and we've been slowly tapering off them since then (now down to alternate days of 12.5mg and then down to 5mg 1st June and then off at the end of June) - so another 6wks. The problem being that up to 80% of kids with this condition will relapse (partly due to other things retriggering the illness (colds, conjunctivitis - ordinary things) and causing them to relapse, but also if the child becomes steroid-dependent due to being on high doses that have essentially halted the function of his adrenal gland).
So, upon returning home from the hospital after 24hrs I researched like mad and due to this I put DS on the GAPS diet to work on healing his gut (which I suspect probably should have happened after the coealics diagnosis). I didn't go back to the broth-only phase, but just put him on the allowed-foods list and kept things like that for about 8wks. In this time I saw dramatic changes to his bowel motions that even the GF diet did not achieve. I started giving him probiotic powder (had to start slowly as it can be dangerous for those who are immunosuppressed and he had been on prophylactic AB's which I made the decision to stop after about a week), Vit C (SA), CLO (his Vit D was really low due to the kidney condition), sunshine every day etc. He also has a kids multivitamin a day and has a fair amount of probiotic yoghurt a day - as much as he wants and probably about a 250-500mls worth with LSA sprinkled on top.
Now we are at the point of finally weaning off and I'm feeling a bit scared about whether or not he will be steroid dependent and jump on the roller coaster all over again (I hate the thought of what the steroids are doing to his body). I have him on a homeopathic remedy for kidney function and he has been really well (had one cold that he flew through in 3 days).
After reading the links that Pat gave me I have a few concerns or questions...
Could the GAPS diet be causing vit/mineral deficiencies? I did put together a spreadsheet a few months back to see if I could capture any gaps and did find that he was probably not getting enough of the B's. I have now put him on a kids supplement of Fish Oil which has B1, B2 and B12 as well as Iodine.
He had blood tests that showed that most levels were fine but was a bit low in Vit E and Zinc - I am unsure how to get those levels up because I'm weary of supplementing on the zinc particularly since it's an immune booster and him having autoimmune diseases - couldn't that trigger off another autoimmune?
One of Pat's other links talked about beets/red pee. well interestingly we've been eating borscht reasonably frequently without noticing red pee. Then about a month ago both ds and I noticed our pee was red but at the time I couldn't reliably track whether it was an issue or not.
In the past month I have reintroduced potatoes - but instead of being a full on side dish, they are just a small portion most days and maybe once a week I use a GF pizza base (this is the only grains we are now having).
I have been noticing DS squinting, blinking a lot, grimacing and generally tensing up his face in the past few weeks. I'm not too sure what this is about but don't think it is a sight issue.
So, any thoughts, advice or warnings about the path we are on? I must admit, the links that Pat gave me had combinations of words I was totally unfamiliar with talking about detox pathways etc, but will try and get my head into it and figure out it's relevance to us right now.
Thanks so much.
Pat (Wuwei) directed me over here and I have spent some time this evening making my way through some of the links she kindly put up for me on a thread that we took OT lol. I have decided to post here in the meantime while I continue to read.
Back history - DS has just turned 6. When he was 2.5 he was diagnosed with coeliacs disease via blood tests. We opted out of the biopsy, and the GF diet took away all the symptoms he'd been presenting. So we carried on like that for 3yrs and in that time I radically changed the way we ate (not that we were that bad, but I pretty much started cooking a lot more from scratch, and switched to GF pasta, bread and cereals and any other gluten sources were exchanged for an acceptable food). We don't vax, he'd never had ab's or panadol or any medicines aside from homeopathic.
Then in December just gone (he was 5.5), completely out of the blue we ended up in hospital with DS being diagnosed with Nephrotic Syndrome (basically his kidney's weren't functioning correctly and he was peeing protein and swelled up an extra 5kg in water weight). NS is another autoimmune disease and often triggered by an allergy or reaction of sorts. the most likely in DS's case was a bunch of mosquito bites (it was summer here). So anyway, this was an emergency situation with no time to research or do anything and he was put on high-dose corticosteroids (50mg/day) and went into remission within a few days and stayed at the high dose for for 6wks and we've been slowly tapering off them since then (now down to alternate days of 12.5mg and then down to 5mg 1st June and then off at the end of June) - so another 6wks. The problem being that up to 80% of kids with this condition will relapse (partly due to other things retriggering the illness (colds, conjunctivitis - ordinary things) and causing them to relapse, but also if the child becomes steroid-dependent due to being on high doses that have essentially halted the function of his adrenal gland).
So, upon returning home from the hospital after 24hrs I researched like mad and due to this I put DS on the GAPS diet to work on healing his gut (which I suspect probably should have happened after the coealics diagnosis). I didn't go back to the broth-only phase, but just put him on the allowed-foods list and kept things like that for about 8wks. In this time I saw dramatic changes to his bowel motions that even the GF diet did not achieve. I started giving him probiotic powder (had to start slowly as it can be dangerous for those who are immunosuppressed and he had been on prophylactic AB's which I made the decision to stop after about a week), Vit C (SA), CLO (his Vit D was really low due to the kidney condition), sunshine every day etc. He also has a kids multivitamin a day and has a fair amount of probiotic yoghurt a day - as much as he wants and probably about a 250-500mls worth with LSA sprinkled on top.
Now we are at the point of finally weaning off and I'm feeling a bit scared about whether or not he will be steroid dependent and jump on the roller coaster all over again (I hate the thought of what the steroids are doing to his body). I have him on a homeopathic remedy for kidney function and he has been really well (had one cold that he flew through in 3 days).
After reading the links that Pat gave me I have a few concerns or questions...
Could the GAPS diet be causing vit/mineral deficiencies? I did put together a spreadsheet a few months back to see if I could capture any gaps and did find that he was probably not getting enough of the B's. I have now put him on a kids supplement of Fish Oil which has B1, B2 and B12 as well as Iodine.
He had blood tests that showed that most levels were fine but was a bit low in Vit E and Zinc - I am unsure how to get those levels up because I'm weary of supplementing on the zinc particularly since it's an immune booster and him having autoimmune diseases - couldn't that trigger off another autoimmune?
One of Pat's other links talked about beets/red pee. well interestingly we've been eating borscht reasonably frequently without noticing red pee. Then about a month ago both ds and I noticed our pee was red but at the time I couldn't reliably track whether it was an issue or not.
In the past month I have reintroduced potatoes - but instead of being a full on side dish, they are just a small portion most days and maybe once a week I use a GF pizza base (this is the only grains we are now having).
I have been noticing DS squinting, blinking a lot, grimacing and generally tensing up his face in the past few weeks. I'm not too sure what this is about but don't think it is a sight issue.
So, any thoughts, advice or warnings about the path we are on? I must admit, the links that Pat gave me had combinations of words I was totally unfamiliar with talking about detox pathways etc, but will try and get my head into it and figure out it's relevance to us right now.
Thanks so much.







She focuses on gluten and corn. The pizza bases I have reintroduced just once a week about a month ago have corn in them (no other corn in the diet aside from that) - I wonder if that could be triggering it? He used to eat loads of corn products prior to the GAPS diet though since it's a standard GF replacement item, so I wonder if an intolerance can develop after not being in the diet for a while (or could have been part of the problem with his bowel motions not correcting fully after going GF). Anyway, worth removing for a wee while and see if I see any improvement. Unfortunately I can't get any standard allergy tests run while he is on steroids as they will mask any allergy response. Thanks again.

: I know we shouldn't eat any soy, it's the convenience foods I sometimes buy when I get behind on cooking. 
and feel free to ask for more info on anything. It's a work in progress and progress happens faster when I know it's actively helping someone

