It's June 2010 already! Allergy Chat Thread - Page 5

[mamafish9]

Originally Posted by chlobo

Mega Foods is a brand, right? Is it the MegaFood Balanced B Complex. We have that one. Otherwise,

So this is what I have on hand:

Perque Activated B-12 guard 2,000 mcg sublingual hydroxoccobalamin
Thorne Folocal (folate as calcium folinate) 800 mcg
Thorne 5-MTHF 1,000mcg

So are these the right forms? Or is there a Hydroxy & a hydroxo? And when you say 200mg I would need to take 3 of the thorne folocal & 2 of the 5-MTHF?


Now, about the strep thing. DS has never had strep that I know of. Do most of these kids have recurrent strep infections? I realize he could still have it but I'm just curious.

ACK!!!! My bad - 200mcg, not mg. I'll go fix upthread. So, do like 1/4 of each of the thorne ones a day. So sorry. And the Perque is perfect, it's one of the ones Dr. Yasko uses as well (I think hydroxo and hydroxy are technically used one for sublingual, one for shots, or some dumb thing - same stuff). And yes, Megafood B is what I use for DS, but like 1/6 a day. Like I said, Yasko believes in small doses of folate, but the correct forms, and then lots of B12. (Take the perque, spread them out over the day).

[kjbrown92]

It's 90F here so I have to run both ovens at 450 for pizza tonight. hee hee.

got mammo and u/s. Said she'd give it to the radiologist and my doctor should call me with results Monday or Tuesday. So more waiting.... neither tech would tell me anything. Went to 6 stores today. Hope I got everything for the party... then I realized that we only have 2 chairs for outdoor seating... oops. I guess I'll send DH out in the morning.

I still haven't started cooking or cleaning for tomorrow. I thought I was going to make biscotti or cookies to go with the ice cream sundaes, but I don't know if that's going to happen or not. And I don't really have an appetizer that DS can have (and it is HIS party). I have potato chips (G and I can have them) and chips & salsa (for "the others"). I have rice crackers... can anyone think of something to dip? I did layered taco dip at the last party... it's a lot of work and I think my ovens are going to be full.

Gotta go soak my beans for the baked beans. And put the pizzas in the oven for (very late) dinner. I'm trying another new crust recipe.

[dannic]

kathy, take notes on the crust recipe, please! I have been dying for pizza and the amy's stuff is just so expensive and every crust I' ve tried I haven't liked. (Course, I could ruin it like I ruined your bread...)

We went to a friends to swim today. So fun. Kids had a blast. My 3 yr old swam the width of the shallow end (floaties) back and forth over and over the entire time. She was so cute. And excited. And it worries me because mil just put her above ground pool up, filled it, and has no fence. I thought she was going to fence the thing first! DD is a climber, so even without the ladder, she could shimmy up the poles on the sides. She does that on the bunk bed already. I don't think I'll be leaving my kids there til there's a fence...and our garden is there... Who puts up a pool without a fence??? She said she wasn't going to fill it til she had fencing...

Originally Posted by chlobo

Thanks for the reminder about the lupus & steroids. I'd heard that before but had not remembered.

So if one hasn't yet developed an autoimmune disorder but is on the way, is there a way to interrupt that process?

I think it's entirely possible, I just don't know how...I totally think that lifestyle, diet both play a part. Take dd for instance...I truly believe had she gone on eating gluten her entire life without addressing all these things, that she would someday end up with thyroid or diabetes issues. I feel like her chances for that are much slimmer now...(those are two autoimmune issues that run rampant in my family--high blood pressure and heart issues are DH's side, as well as asthma, allergies and autism...). I know environmental issues stack the deck these days, but these other things certainly help. And I am totally wanting dr yasko's tests for myself, dh and her. I think that would give a us an interesting picture into our family... (just have to afford them)

[mamafish9]

OK, tiptoeing into land I didn't want to go in to. I think we need to test DD for food intolerances and celiac. She's 6yo and 35lbs, and after three weeks of whooping cough, she looks like a cadaver . Happened with flu earlier this year too. She's skinny enough it's a health issue. She doesn't eat enough. But before we force feed her, we need to rule out physiological stuff. Food intolerances & celiac seem like the obvious two to check first.

So - ideally I want an ELISA test that is from a good lab, doesn't need a doc to order (I can probably get our family doc to order, but it'd be easier if I didn't have to do that), and finger prick, not blood draw. I found US Biotek, and a site I can order their 96 panel IgG fingerprick test from that doesn't require a doc (I think they have one onsite that signs the orders). Any reasons that is a bad idea? Also, if you are celiac, would you necessarily be IgG to gluten? DD doesn't really have any other indicators (normal poop, etc), but I figured it was smart to rule out.

Ugh. I don't want to go here.

[dannic]

I know there's a blood test for celiacs...so they are looking for certain somethings in the blood...we did enterolabs. DD did not have the celiac genetics, but all celiac symptoms and IgG to gluten. I know many are working to broaden the "diagnosis" to add people like dd. I don't know why the US is so far behind in this area. I think it's wise to rule it out. And keep in mind she can be Non Celiac Gluten Intolerant/Sensitive. (Which is becoming a label in itself.)

[Theloose]

Deb celiac wouldn't show up on an IgG panel, sorry. And as you know, gluten could still be causing a bunch of issues even without celiac. Maybe a GF trial over the summer when there's no school to confuse things?

Has anyone mentioned vit D for autoimmune stuff yet?

Not around much - still trying to juggle dd and ds, but now I have energy and motivation, too. Did laundry, unloaded the dishwasher, scrubbed the floor (it was sticky), reorganized a couple cabinets, and got dd set up with water play. Not much compared to a few of you who will remain nameless, but HUGE for over here

[mamafish9]

Found this article on celiac and blood tests. It sounds like a combo of IgG and IgA antibodies (if you are positive for both) is a pretty accurate test for celiac? I don't need definitive, and I know she could be just IgG for gluten. Hoping neither is the issue, and she's just in the pancreatic supports camp with DH and DS, but...

Shannon, I'm thinking to go the test route this time, because a food trial with DD is going to be, um, difficult. And if it is a food intolerance, it's got to be something like dairy or gluten she gets every day (or several somethings, but including one of those). This is my kid that doesn't eat meat, so pulling dairy is going to take out a lot of her protein sources. Gluten would be easier nutrition wise, but a huge stress on her in terms of changing her diet (she's my sensitive child who doesn't handle change well). So while I know the tests are never 100% accurate, it seemed like the place to start.

[Theloose]

Originally Posted by mamafish9

Found this article on celiac and blood tests. It sounds like a combo of IgG and IgA antibodies (if you are positive for both) is a pretty accurate test for celiac? I don't need definitive, and I know she could be just IgG for gluten. Hoping neither is the issue, and she's just in the pancreatic supports camp with DH and DS, but...

Shannon, I'm thinking to go the test route this time, because a food trial with DD is going to be, um, difficult. And if it is a food intolerance, it's got to be something like dairy or gluten she gets every day (or several somethings, but including one of those). This is my kid that doesn't eat meat, so pulling dairy is going to take out a lot of her protein sources. Gluten would be easier nutrition wise, but a huge stress on her in terms of changing her diet (she's my sensitive child who doesn't handle change well). So while I know the tests are never 100% accurate, it seemed like the place to start.

Certain levels of one of the antibodies is supposed to be diagnostic, but I forget which one. Ttg?

I'm assuming you've played with supps like zinc and mag and stuff? Watching dd and myself, I swear, a bunch of the sensitive kid stuff ties in to the nutritional stuff as well...

[kjbrown92]

Originally Posted by mamafish9

OK, tiptoeing into land I didn't want to go in to. I think we need to test DD for food intolerances and celiac. She's 6yo and 35lbs, and after three weeks of whooping cough, she looks like a cadaver . Happened with flu earlier this year too. She's skinny enough it's a health issue. She doesn't eat enough. But before we force feed her, we need to rule out physiological stuff. Food intolerances & celiac seem like the obvious two to check first.

So - ideally I want an ELISA test that is from a good lab, doesn't need a doc to order (I can probably get our family doc to order, but it'd be easier if I didn't have to do that), and finger prick, not blood draw. I found US Biotek, and a site I can order their 96 panel IgG fingerprick test from that doesn't require a doc (I think they have one onsite that signs the orders). Any reasons that is a bad idea? Also, if you are celiac, would you necessarily be IgG to gluten? DD doesn't really have any other indicators (normal poop, etc), but I figured it was smart to rule out.

Ugh. I don't want to go here.

Wasn't there a stool test for celiac or gluten intolerance from some lab?
I didn't think celiac showed up on a IgG screen either. It's autoimmune, but is it just antibodies that the tests are showing?

Does she not eat meat because she's a vegetarian? Or not eat meat because she doesn't like it? Or... just curious. ALCAT doesn't require a doctor either... (I'm biased because I haven't taken the other ones, and ALCAT was good for us).

[mamafish9]

Originally Posted by whoMe

Certain levels of one of the antibodies is supposed to be diagnostic, but I forget which one. Ttg?

I'm assuming you've played with supps like zinc and mag and stuff? Watching dd and myself, I swear, a bunch of the sensitive kid stuff ties in to the nutritional stuff as well...

It sounds like IgG + IgA both positive is about 95% predictive of celiac (which would be plenty close enough for me).

She's fine on supps, and we hair tested, she's not zinc or mag deficient. I've never really impacted her much with supps, she's like me, doesn't seem that affected. She's just tiny, and I'm not convinced it's normal. I think with how thin she is after whooping cough, it's just a lot more disturbing than normal, and I'm taking it as motivation to go rule out a few things.

Originally Posted by kjbrown92

Wasn't there a stool test for celiac or gluten intolerance from some lab?
I didn't think celiac showed up on a IgG screen either. It's autoimmune, but is it just antibodies that the tests are showing?

Does she not eat meat because she's a vegetarian? Or not eat meat because she doesn't like it? Or... just curious. ALCAT doesn't require a doctor either... (I'm biased because I haven't taken the other ones, and ALCAT was good for us).

Enterolabs will stool test and gene test, but I figured I'd start with a wider food intolerance panel - I have no reason to believe gluten is a more likely culprit than dairy, for example.

She's never liked meat. I always assumed it was texture related. I don't eat a lot of meat, it makes me feel full and blecky. But she'll eat bacon, meatballs, and calamari no problem. And happily eat beans, dairy, eggs.

I just figured out I can order the US Biotek panel through Directlabs, so no doc needed, and with the autism-mercury discount, it will only cost about $175. The ALCAT looks great, it's just really expensive, and it requires a blood test (which honestly scares me more than the cost!). I have a sister who passes out and goes into shock (and takes about 48 hours to recover) every time they draw her blood - and DD is sooooooo like her. They can have all of my blood they want, but DH, DD, or DS, it would be a MAJOR calamity. So trying to start easy here .

From what I've read here, it seems like the ELISA stuff people do can often be false negative/positive on things like corn, or more exotic fruits, stuff like that - does anyone have a story of the ELISA being wrong on gluten or dairy?

[chlobo]

Originally Posted by whoMe

Deb celiac wouldn't show up on an IgG panel, sorry. And as you know, gluten could still be causing a bunch of issues even without celiac. Maybe a GF trial over the summer when there's no school to confuse things?

Has anyone mentioned vit D for autoimmune stuff yet?

Not around much - still trying to juggle dd and ds, but now I have energy and motivation, too. Did laundry, unloaded the dishwasher, scrubbed the floor (it was sticky), reorganized a couple cabinets, and got dd set up with water play. Not much compared to a few of you who will remain nameless, but HUGE for over here

What about vit D & autoimmune stuff?

[tanyalynn]

Deb, no fun to need to look into stuff like this for our kids. It sounds like you're putting together a good plan though, and you know more about various tests than most. The only thing I can think of is that I think some of the IgGs can be artificially low (or at least below the thresholds) if sIgA is low. Not sure if that's just stool testing, or if that's valid for blood tests as well.

[changingseasons]

Originally Posted by JacquelineR

Oh yeah. One more minor (?) annoyance.
The app I use on my iPod for organizing myself got erased somehow (I'm guessing the somehow starts with R and ends with aphael, but that's my best guess. ). So, the last month or so of putting data (chore list/schedule, Master grocery list, household shopping list, clothes shopping list, pantry inventory, wish lists for people, etc etc) into my iPod? Yep. Gone. *sigh*

Ouch. But I'm with Tanya- now you can get the app you wanted!

Originally Posted by mamafish9

From what I've read here, it seems like the ELISA stuff people do can often be false negative/positive on things like corn, or more exotic fruits, stuff like that - does anyone have a story of the ELISA being wrong on gluten or dairy?

DD's 1st ELISA was negative for corn, gluten, and dairy. The 2nd ELISA was positive for gluten, but still negative for dairy and corn. Of course it turns out she's IgE to dairy, corn, and wheat, so who knows- the ELISA could be accurate. But I think it's strange that with all her other IgG positives, that those major ones would be negative. I'm really not convinced any testing is worth the money, but I might be a little jaded.

eta: oh yeah- I think that the ttG is the usual celiac blood test.

[changingseasons]

Quick question- why does the Nutricology pancreas glandular fact sheet say specifically, "Caution: Glandulars should be avoided by pregnant women, nursing mothers and children."

I've seen the standard, "use caution when prengnant or nursing" which is on almost every supplement out there... but I've rarely seen children specified, which makes me nervous about getting this for DD.

Any ideas why they would say that?

[tanyalynn]

Um, I don't know. I'd tentatively planned to give it to the kids, maybe before the digestive enzymes, but I didn't have a real plan yet.

And I thought it would be appropriate, being here, and sorta funny... I think this post may be # 10,000 for me.

Wouldnta thunk it a few years ago.

[mamafish9]

Originally Posted by changingseasons

Quick question- why does the Nutricology pancreas glandular fact sheet say specifically, "Caution: Glandulars should be avoided by pregnant women, nursing mothers and children."

I've seen the standard, "use caution when prengnant or nursing" which is on almost every supplement out there... but I've rarely seen children specified, which makes me nervous about getting this for DD.

Any ideas why they would say that?

I can't speak to their motivations, but I can say that there are a lot of ASD kids on Dr. Yasko's forum taking them, including a lot of pretty "fragile" kids.

They don't put that in their 'standard' product info or on the bottle, I don't think, I've only found it on the fact sheet on their site.

The only studies I've found showing any negative side effects of pancreatic supports for kids is with very high strength pancreatic enzymes (like crazy high) with cystic fibrosis - and even there, researchers aren't sure it's the enzymes that are the cause.

Originally Posted by changingseasons

DD's 1st ELISA was negative for corn, gluten, and dairy. The 2nd ELISA was positive for gluten, but still negative for dairy and corn. Of course it turns out she's IgE to dairy, corn, and wheat, so who knows- the ELISA could be accurate. But I think it's strange that with all her other IgG positives, that those major ones would be negative. I'm really not convinced any testing is worth the money, but I might be a little jaded.

la la la la la (fingers in ears). LOL. Yeah - it might not get me the answers I need, but I think it's worth a try.

Originally Posted by tanyalynn

And I thought it would be appropriate, being here, and sorta funny... I think this post may be # 10,000 for me.

[mamafish9]

Hey - I just found a 20% off coupon code buried in a blog post, for directlabs - I just tested it, it still works, "AUT". In case anyone needs tests!

[gigismom]

Originally Posted by deditus

Normal. As long as he doesn't get any cramps or uncomfortable rashes, I'd go with it and see how he does. I wouldn't up the dose for at least a week though. We do low n slow here.

What to expect (from enzymestuff):

http://www.enzymestuff.com/discussionadjustments.htm

thanks for the link

Originally Posted by mamafish9

That is a LOT of digest gold and viracin to start off with. You'll definitely see plenty of die off with that, if he has gut issues. Lots of loose stinky poop is definitely die off. Watch his behavior - you'll know you pushed too fast if he starts to feel really bad. In our house, we often see a little lethargy/feeling bad, a little wildness, a little low grade fever, a little sleep disruption. If any of those things get too bad, back off on the doseage, and/or try some activated charcoal and/or clay and vitamin C to mop up the toxins.

And while you are doing this, it is critically important he poop at least daily (or else the toxins will get reabsorbed as they sit waiting to get pooped out). Sounds like that isn't an issue right now, so that's great!

yeah, I wasn't sure about the dosages. I actually lost the paper that his doctor gave me that had all that info. I thought she said start with 1/2 so that is where we started. I have such a hard time getting her to call me back with the right info and she is not in the office on thurs and fri this week. I did not want to wait until Monday. Anyway, thanks for the info. He pooped again tonight about an hour after taking the enzymes. Still no cramping. However, you might note that I am typing with a very restless half asleep and nursing ds in my lap right now at 4 am. We have not been up at night for a loooong time. I am thinking about getting some clay tomarrow. I have never used this. What do I look for? How do I give it and how much do I give? He is already taking vit c. 1/4 tsp of the Now brand sodium ascorbate. Can't get up right now to see how much that is. Is this a good form of vit c for him? Is it enough? I chose this bc he reacted to the other vit c we had tried and someone suggested it as an alternative for me (maybe tanya?) Ds doctor thought this might give him too much sodium but I am not convinced.

Originally Posted by mamafish9

Some mthf folate (like 200mcg or so), some folinic (again, about 200mcg), intrinsic factor (to help transport B12, Yasko has a supp on her site that has intrinsic factor & folate, take 1/4 tab a day), and then B12 - without genetics, do hydroxy B12, 3-5mg a day at least (more if that seems helpful). She doesn't tend to use a lot of folate, even if you have mthfr mutations, because excess folate can be converted to glutamate (excitatory and inflammatory and a big problem for ASD kids and people with autoimmune disorders). If you have mthfr too, she has other supports - NADH, BH4, liver supports, can't remember what else.

hmmmm... we have been trying to support methylation for some time. ds was muscle tested for dosing on some VERY expensive methyl b12 and adeno b12 drops and folinic acid that we used for a few months. I think these really helped his reactions lessen and eventually stop. Just in the past week or so I have changed to using less expensive options. Now he is taking Natural Factors sublingual b12 (1 tab 1x per day) and thorne mthf folate (1 capsule 1x per day). So it looks like he is getting way more folate than what you are suggesting. I can't remember now how much is in the thorne supp and again, can't get up right now to check. Maybe I need to cut that back? Also, he chews the sublingual tab, is this ok? I am considering getting the expensive drops just for him and keeping myself and the girls on the other supps. At least the expensive stuff would last longer then and I could keep him on the dose and forms that he was muscle tested for and have been working well.

kathy... have a great weekend with your party! Sending healthy, strong and healing thoughts your way!

anyway... i really want to try some clay tomarrow (today) so I can sleep tonight. can someone help me out in that department, please!

thanks as always for your guidance and support!

jen

[gigismom]

Originally Posted by tanyalynn

Um, I don't know. I'd tentatively planned to give it to the kids, maybe before the digestive enzymes, but I didn't have a real plan yet.

And I thought it would be appropriate, being here, and sorta funny... I think this post may be # 10,000 for me.

Wouldnta thunk it a few years ago.

wow! I have been on mdc for a looong time but I don't think I would have enough useful info to share to reach 10,000 in my lifetime! I am sure glad that you do though! You have helped me so many times. congrats on your milestone!

[chlobo]

Originally Posted by mamafish9

ACK!!!! My bad - 200mcg, not mg. I'll go fix upthread. So, do like 1/4 of each of the thorne ones a day. So sorry. And the Perque is perfect, it's one of the ones Dr. Yasko uses as well (I think hydroxo and hydroxy are technically used one for sublingual, one for shots, or some dumb thing - same stuff). And yes, Megafood B is what I use for DS, but like 1/6 a day. Like I said, Yasko believes in small doses of folate, but the correct forms, and then lots of B12. (Take the perque, spread them out over the day).

Are those the dosages for an adult? Or for a kid? For myself I figure just one of each but is that too much?

I give my 6 year old one whole MegaFood. Is that too much for her? Haven't started her on the other ones yet, except for the b12.