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Why is ds reacting to me? - Page 3

post #41 of 101
Thread Starter 

After a few days of grumpy, crying, gassiness and 'slimy dijon' poop, at some point today, ds has become happy, squirmy, baby with seedy, watery yellow mustard poop. . It could be the end of die off, it could be the clay water (about 1/4 tsp at the bottom of my glass, take about 3 glassesful between meals to get it all down), it could be cause of eating at WF on Saturday. but
post #42 of 101
Thread Starter 
Back to spit up and dijon poop this morning. Wondering if I should do clay morning and afternoon. Maybe as all non-meal water.

Dd's got bad poop the last few days too
post #43 of 101
Do you have her on enzymes too, Shannon - or just you? I'd take bad poop as a sign of progress, actually - we had about 4-5 days of very strange poops starting the enzymes, then they got better than I've seen ever.

ETA: new compounded supp Dr. Yasko just released, for pancreatic/ VDR/Fok support (I think that's a mutation you have) - I thought the ingredients list might interest you. I thought it was hilarious it has pine nuts in it, given the obsession this board had with them for a while!
post #44 of 101
Thread Starter 
Nope. In retrospect, I should have done her first. This is either a mystery reaction we've been seeing for the past several months, reaction to the corn (and?) chips dh ok'd at the farmers market, or reacting to my die off. Not much way to know
post #45 of 101
Finally there is a discussion going on about fats and slowing detoxing:
Post 44 and 45
post #46 of 101
OK, by request, an update on our pancreatic stuff.

One very interesting piece of the puzzle for DS we are just putting together... like I posted last week, pancreatic support has been huge for him. The digestive pieces were obvious, but I'm just coming around to understanding the blood sugar regulation pieces. I think the reason DS nursed every couple of hours for 3 years (and seemed to *need* to nurse at night) is that is how he was regulating his blood sugar. And without nursing now, we can definitely see the crash if he doesn't eat (and eat protein) often enough (just like his sister and dada, hmmm...)

I don't think it's an accident that a couple of weeks after we put lots of pancreatic supports in place, it was possible for us to night wean. And he is now sleeping through the night about half the time - which he never, ever did. Just one more thought for those of you with very attached nurslings, poor sleepers, gut bugs, and/or poor digestion (the pancreatic supports are impacting all of these for DS).

In an unusual twist for me, I haven't done a whole lot of reading on the biochemistry of the pancreas. We introduced on pancreatic support (digestive enzymes with pancreatin), and the change was obvious. So I'm trusting Dr. Yasko here, and adding the other supps on her "pancreatic support" list.

Main supports we've done so far are digestive enzymes with lots of pancreatin, and ground up pancreas pills. Yasko just rolled out a new custom compounded supp for pancreatic support (to be used along with her custom digestive enzymes, linked above) that we are just introducing now. Important note, I don't know about these supps from a trace allergens perspective, sorry!

Lots of die off / detox reaction again with introducing the compounded supp (and we're starting with just a little), so something in it beyond ground up pancreas is impacting DS (for the other pancreatic supports, we've had 3-4 hard days with each introduction and/or increase, and then very nice results). I suspect the important new addition is the pine nut oil (a natural precursor to CCK, which is important for getting pancreatic enzymes to release, I think). There would also be CCK in the ground up duodenum ingredient.
post #47 of 101
Quote:
Originally Posted by mamafish9 View Post
Lots of die off / detox reaction again with introducing the compounded supp (and we're starting with just a little), so something in it beyond ground up pancreas is impacting DS (for the other pancreatic supports, we've had 3-4 hard days with each introduction and/or increase, and then very nice results). I suspect the important new addition is the pine nut oil (a natural precursor to CCK, which is important for getting pancreatic enzymes to release, I think). There would also be CCK in the ground up duodenum ingredient.
I think this is so interesting. Pine nuts are the ONLY nut to which DS2 does NOT react.
post #48 of 101
Thread Starter 


Okay. Computer time for 5 minutes...

First, thanks bluebird for the link!

Deb... Remind me what brand enzymes ds was on before? Was the pancreatin the only addition? Mine have a bunch of digestive support (betaine Hcl, etc) in addition to the pancreatin, and I started full dose after doing nothing, so I haven't exactly been controlling my variables over here... What's the new stuff in the compounded one for you? You're thinking it's the CCK support that's doing the most?

Okay, so pancreatin for pancreatic enzymes. I'm wondering if it's a different form of protease or something that's helping. The way enzymes work, there's usually one to break the big chains in food into small chunks, then another enzyme that breaks the smaller chunks into individual peptides (or saccharides or fatty acids or whatever).

Presumably, the support from the freeze dried duodenum/pancreas is a little bit hormonal, but largely nutritional? Yeah?

I'm trying to break this down into bits I can understand, cause I have a hard time letting go of the biochem So enzymes to replace what's missing, and to prove that replacing them is a key piece. Probably critical. Herbs for various general support. I'm going to assume that they're not critical, and the stuff like rosemary and sage can just be used in abundance in cooking? Nutrients like vitamins D and K I have covered, and seem like they'd be the long term support? Which leaves GABA (symptom support?), the ground up organs (which I'm hoping to avoid), and CCK support? And you think the CCK support is a big part for you?

So that leaves me with reading up on CCK for the short term. I think. And keeping up enzymes, greens, HVBO, and focusing on sage/rosemary recipes. Man, sick postpartum brain with crazy restricted computer time is NOT conducive to learning this stuff. So glad you're here to point me in a good direction!
post #49 of 101
Thread Starter 
Quote:
Originally Posted by JacquelineR View Post
I think this is so interesting. Pine nuts are the ONLY nut to which DS2 does NOT react.
Aren't pine nuts totally not related to nuts?
post #50 of 101
Quote:
Originally Posted by whoMe View Post
Deb... Remind me what brand enzymes ds was on before? Was the pancreatin the only addition? Mine have a bunch of digestive support (betaine Hcl, etc) in addition to the pancreatin, and I started full dose after doing nothing, so I haven't exactly been controlling my variables over here... What's the new stuff in the compounded one for you? You're thinking it's the CCK support that's doing the most?

Okay, so pancreatin for pancreatic enzymes. I'm wondering if it's a different form of protease or something that's helping. The way enzymes work, there's usually one to break the big chains in food into small chunks, then another enzyme that breaks the smaller chunks into individual peptides (or saccharides or fatty acids or whatever).

Presumably, the support from the freeze dried duodenum/pancreas is a little bit hormonal, but largely nutritional? Yeah?

I'm trying to break this down into bits I can understand, cause I have a hard time letting go of the biochem So enzymes to replace what's missing, and to prove that replacing them is a key piece. Probably critical. Herbs for various general support. I'm going to assume that they're not critical, and the stuff like rosemary and sage can just be used in abundance in cooking? Nutrients like vitamins D and K I have covered, and seem like they'd be the long term support? Which leaves GABA (symptom support?), the ground up organs (which I'm hoping to avoid), and CCK support? And you think the CCK support is a big part for you?
DS was on Digest Gold before. Yasko's enzymes have a bit of basic enzymes in them, but very, very low compared to the Digest Gold. Hers also have papaya and stuff in them, but I think stomach acid is OK here now, so that leaves the pancreatin as the difference there.

For the new supp, we were on ground up pancreas, and then D & K, but not the other stuff (rosemary & sage are for Vit D transport, and they scare me because of the sals, but we're giving it a try). CCK and duodenum would be the big two adds, I think.

The ground up organs, my simplistic idea is that they may provide both some building blocks (but a little more built up to the right form/hormone/compound than if our bodies had to synthesize from scratch), and also that they contain things like CCK in the mix (since it sits in the duodenal cells, I think - sorry, I am sooooo overwhelmed trying to keep this all straight right now, so I've let go of understanding it all!).
post #51 of 101
Quote:
Originally Posted by whoMe View Post
Aren't pine nuts totally not related to nuts?
According to some, they're technically a seed but they still need to be labelled as nuts, I believe.
post #52 of 101
Thread Starter 
A loooooooong update, in bits and pieces

To start, the facts.

Wednesday night I started getting the first hints of mastitis. Rest, vit C and garlic didn't touch it thursday, and so I got an Rx for abx (clindamycin) friday afternoon, and finally got the first dose around midnight that night. I'm alternating doses (4x/day) with probiotics - mostly culturelle which is straight acidophilus, I think. The most likely cause is/was dehydration, and I've been struggling to rehydrate (still not there) ever since. My supply took a major hit, and my peak temp reading (which I don't really trust) was 104.

Friday we left for BIL's wedding, 2 hours away with no traffic or babies. Ds hated the drive, and didn't really sleep from 2:30-11pm. Happy 2 month bday! While gone, we mostly ate out, as safely as possible. We decided that would be less stressful than packing food, even though I react to restaurant food almost all the time. I brought vitamins, but mostly forgot them on friday and saturday, and only got some on sunday/monday. Enzymes included. Normally, skipping vitamins totally knocks me out and I feel it first with insomnia/stress/depression.

We were surrounded by extended family and dd was overwhelmed and shy about it (like always) but totally warmed up and enjoyed it by the end (like always).

Dd got very little sleep - 1hr car naps at 5 or 6 would keep her up till 11 or 12 each night. Dd decided she wanted to try the cheese pizza at buca di beppo (!!!) on saturday, and ate 3 pieces. She has dark circles under her eyes, stayed up super late, and wet the bed sat/sun/mon nights. According to dh, poop has been 'immaculate,' even by my standards, but I don't trust he knows my standards She did complain of her tummy hurting, but *sometimes* that just means 'I have poo poo.'

Ds is just now pooping for the first time since wednesday or thursday morning (it's tuesday), and has been pretty unhappy about it the last week. A bunch of cradle cap showed up over the course of a day or two (it first registered to me on monday). He was pretty much perma-attached to the boob if I was anywhere nearby. No spitting up at all except after lots of milk in bed sunday morning.

We ate thai food, hotel bacon/eggs, buca di beppo, (not raw) goat yogurt (me, just sat night), wedding buffet (verified safe), and mexican food). My mood stayed stable and the insomnia was way less than it should/could have been (we were also exhausted).
post #53 of 101
Thread Starter 
Me:
I forgot to add, my appetite has been really, really low since thursday, and I've been wanting/eating a much more reasonable fat/protein/carb ratio.

I'm guessing that the antibiotics are resetting my gut bacteria (particularly this one), and that my old flora was eating up my vitamins/food and turning it into toxins for me to process? And they like some foods more than others and that's what I react to most?

I'm on the abx for the rest of the week. I want to totally blast myself with enzymes (to make a hospitable gut) and probiotics (as many whole food ones as possible). And then, start trialing foods again. I'm fully expecting a bunch of passes. Maybe even all of my mood triggers?

Ds:
I think he's taking the brunt of the effect of the abx, die off, etc with the lack of poop, face kind of breaking out, and cradle cap. And the spit up really does have to do with overeating, but if that has to do with oversupply/overactive letdown because of my reactions, that totally fits.

Dd:
Needs more social interaction, and needs more observation/role playing to figure out how it works. I think the lack of GI reaction to the pizza is consistent with my thoughts that her GI reactions are her reacting to *my* reaction. And I think the bedwetting (same as low folate/mag for her) could be the motivation she needs to start taking vitamins herself. And the dark circles provide clues for other detox pathways (methylation?) to work on.

If this works...
upping my enzymes today! Gonna do this thing right and hit it as best I can. Who knows when I'll be on strong abx again!
post #54 of 101
Congratulations on finding the silver lining in mastitis .

I'd say try your DD on enzymes - dark circles can be glutamates, and pancreas is needed to make the enzyme that can convert glutamates to GABA... Could also be low mag, from the extra calcium intake.
post #55 of 101
Thread Starter 
Dark circles are really rare for her, as in, once before that I can remember. I'm more inclined to blame the gluten/dairy. Enzymes are definitely on her list, just as soon as I can figure out how to get her to agree to them...
post #56 of 101
Thread Starter 
After looking at some of my 23andme snps with a yasko filter, my summary of me, from what I could check on that list:

High, high dopamine, which may be what's protecting me from metals (and microbes)?
Low low need for methyl groups, which would explain why I don't think I have big methylation issues.
Big CBS up regulation, so predisposition to high ammonia and low BH4 - I already deduced the low bh4, but ammonia tests normal
Probably because VDR Fok says I don't digest/absorb well.
Finally, the combo of bh4 and ammonia and NOS says major oxidative stress. Check.
And of course, the MTHFR fun that started it all that says folate is super important. And bh4 is even lower.

The only part that doesn't fit well is my low dopamine symptoms. But a snp yasko doesn't test for says I have a messed up dopamine *receptor.* So all in all, I did a pretty good job of guessing my yasko genetics, as far as I can tell.
post #57 of 101
Thread Starter 
Now, looking into the future, as I start absorbing protein better and replace my missing amino acids, ammonia will start to rise which will drop bh4 even lower. Markers that that's going to happen might show up as stress, urine sulfite/sulfate, and blood ammonia. Maybe vit C bowel tolerance too? And when it does happen, the trick will be to reduce how much protein I'm eating.

I'm considering a bh4 supp, but am a bit concerned about the threats of major detox with the increase in neurotransmitters. If the big concern is having open detox pathways, think I have that covered. If the concern has to do with an increase in dopamine mobilizing metals, I think I'm okay there - I already have high dopamine and presumably low metals. I'm wondering how to just support my own bh4 production instead, and if that's a reasonable option - how much of a deficit am I looking at here?

I don't have a high need for b12 or for methyl donors. I'm wondering if I should play with hydroxy b12 or just not worry about it? I get no reaction to methyl b12, except that while pg with ds, it zapped my brain fog for me.
post #58 of 101
Dopamine often runs counter to genetics at the beginning, because low BH4 causes suppressed neurotransmitters. Also causes cycling. So what Yasko says is that right now you are functionally low dopamin/cycling, and as you get all aspects of methylation working (which for her involves supporting BH4), you will get dopamine expressing more like you'd expect for your genetics. Which in your case means you'd see more typical normal/high dopamine symptoms, and you will get far less tolerant of methyl donors.

And yeah, watch for increasing ammonia. We're on the lookout for that too. It will stress your BH4 even further (2 BH4s are needed to turn one ammonia into whatever it turns into before you pee it out).

Yasko has two supps you might look at (either to take, or to copy ingredients). This one is for CBS+ and NOS+ (sounds like you are both of those). Liver support and kidney support, but also biopterin (very low level BH4 precursor), also NADH. Yasko says what the body needs to make its own BH4 is biopterin, NADH, and liver extract. Second possibility is the A1298C supp, similar ingredients (but missing the yucca, which is one way Dr. Amy controls ammonia).

If you sense high ammonia, do a charcoal flush (take activated charcoal away from supps, follow by mag so you poop). Yasko recommends them weekly for people with ammonia issues and/or the stronger CBS mutation (C699T).

Also, DHPR, which is the other pathway to recycle BH2 is suppressed by aluminum - so once you get the aluminum out, you should be able to maintain BH4 levels a little better.

We're supping BH4, fwiw, and we're hitting detox without his dopamine having gone up (his blink rate is still <5/min).
post #59 of 101
Thread Starter 
Quote:
Originally Posted by mamafish9 View Post
Dopamine often runs counter to genetics at the beginning, because low BH4 causes suppressed neurotransmitters. Also causes cycling. So what Yasko says is that right now you are functionally low dopamin/cycling, and as you get all aspects of methylation working (which for her involves supporting BH4), you will get dopamine expressing more like you'd expect for your genetics. Which in your case means you'd see more typical normal/high dopamine symptoms, and you will get far less tolerant of methyl donors.

And yeah, watch for increasing ammonia. We're on the lookout for that too. It will stress your BH4 even further (2 BH4s are needed to turn one ammonia into whatever it turns into before you pee it out).

Yasko has two supps you might look at (either to take, or to copy ingredients). This one is for CBS+ and NOS+ (sounds like you are both of those). Liver support and kidney support, but also biopterin (very low level BH4 precursor), also NADH. Yasko says what the body needs to make its own BH4 is biopterin, NADH, and liver extract. Second possibility is the A1298C supp, similar ingredients (but missing the yucca, which is one way Dr. Amy controls ammonia).

If you sense high ammonia, do a charcoal flush (take activated charcoal away from supps, follow by mag so you poop). Yasko recommends them weekly for people with ammonia issues and/or the stronger CBS mutation (C699T).

Also, DHPR, which is the other pathway to recycle BH2 is suppressed by aluminum - so once you get the aluminum out, you should be able to maintain BH4 levels a little better.

We're supping BH4, fwiw, and we're hitting detox without his dopamine having gone up (his blink rate is still <5/min).
Fun stuff, this is! On my mind this morning...

Are there cheap home tests for ammonia? Symptoms to watch for? Stimming, right? And brain fog? Brain fog is a bit to general for me on that one. Heartfixer talks about urine strips for sulfite and sulfate. I wonder if they'd be worth it? I wonder if I'm in tune enough with food cravings and symptoms that I'll just naturally go away from the protein? And presumably, the ammonia wouldn't even be an issue if I'm not overdoing the protein, right?

So now I'm supporting my pancreas, liver, kidneys... What's left!? I think I'll skip her supps. They just confuse me more than anything. I think I'm going head first into eating organ meat land rather than doing the extracts. I've got a great source, and am mentally there. Still don't know about actual preparation techniques, or WHEN to eat them, but yeah. Whole foods. Broccoli extract is just funny, given how much broccoli I've been eating. Which leaves biopterin, various forms of niacin, and carnitine. The carnitine shouldn't be necessary unless/until ammonia becomes an issue. Niacin should be reasonable to get from food. Which leaves the biopterin. Biopterin *should* be readily synthesized, especially with adequate purines in the diet (hello, organ meats). If I'm not making enough now, that's perhaps because of the general amino acid deficiency? Metametrix makes a urine test for bh4, neopterin, biopterin. I wonder if that'd be worth it, just to see if I'm on the right track. Then maybe one round of the bh4 supp, to fix the deficit, and just food for maintenance?

How I wish I could actually plan it all out like this and not have reality change everything as soon as I implement the first step...

And finally, how does bh4 cause detox, if it's not cause of the dopamine? And do you know what sort of detox it is with ds? Metals again?
post #60 of 101
Thread Starter 
Oh right, just to put it out there, I've got big CBS up regulations (transsulfuration), and major COMT down regulations (slow dopamine breakdown, low need for methyl groups). Those two probably actually work well together - homocysteine is drained out of the methyl cycle, but I don't have a big need for methyl groups so I don't really miss it. And because I don't need so many methyl groups, MTHFR C677T isn't as big a deal as it could be.

Because of CBS, I will make a bunch of ammonia. Because of my aluminum and MTHFR A1298C, I'm low on BH4. Because of NOS (hetero), I'm extra sensitive to both bh4 and ammonia. The cost of not keeping up is oxidation.

Sorry about all the posts, just trying to wrap my head around it all and don't have anyone IRL.

An interesting tidbit from heartfixer:
"COMT (+/+) VDR Taq (-/-) individuals will be susceptible to iodine and lithium depletion as they detoxify"
My lithium was nonexistent on my hair test. And moderate doses of iodine are helpful for me.

So my current thinking:
No increases in pancreatin till we can get back to a stable baseline.
Get serious about supping vit C for the antioxidants.
Really keep up with Mo so sulfite doesn't overload, and to keep sulfate up for detox.
Start increasing pancreatin again.
Keep up with iodine and start lithium per the heartfixer quote.
Reassess and strongly consider a BH4 supp.
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