My Story

[tanyalynn]

My son's sleeping better tonight, which is of course good, but I'm worried that I need to do more detox-wise to avoid worsening food intolerances. I've avoided big corn (not trace amounts, but corn tortillas and chips and popcorn were typical around here) for a few days now, since Kathy's thread on gluten/dairy/soy/corn came up.

My son and I seem very similar in our strengths and weaknesses, so far I haven't identified any differences. So I'm really looking to tweak his supps.

So, any ideas on what I should focus on will be helpful. Since I've seen how interconnected I am with the kids, and how similar my son is to me, I'm going to include everything I can think of tonight between him and me and see where it goes.

As background: I'm here (at MDC and in Allergies) because my health has been affected by the mercury in my amalgam fillings. Other stuff has contributed, could've/should've been eating better all those years, but the amalgams were big (and it runs in my family, so it started when I was a baby with the mercury and other toxins I got from my mom). My son has some mild sensory symptoms (from the toxins he got from me). My daughter's hair test showed a fairly high level of arsenic (just into the red) and showed mercury via the regular minerals (her actual mercury was low in the green).

Me: environmental allergies and anxiety around age 12 or 13 (later realized it was in the same timeframe as when my amalgams were placed),
--intermittent depression starting around 16 or so (Prozac and Zoloft both helped),
--huge _decrease_ in shyness around age 20 (I think something biochemical must've changed at this point, I was extraordinarily shy as a child and all through my teen years)
--general feeling of being rundown after kiddo #1 was born (Nov03)
--completely hit the wall in Oct05, 4 months pregnant with kiddo #2, suddenly very hypothyroid (started one weekend, went from sorta normal to freezing/exhausted/all sorts of stuff),
--various additional life stresses before and after pregnancy #2 thrashed on my adrenals, though I didn't realize it til later
--I have 2 lunulae (thumbs), my son has none (my daughter only 1)--assuming vitA here

Things I can see:
--nutrients that are hypothyroid related (iodine, zinc, selenium, low in the first 2 and i assume selenium too--kids still have noticeable zinc deficiencies even after 20 mos supplementing)
--based on high, arched palates and tongue ties, and me being hypo, I was probably A deficient (and son had a couple illnesses that were related to being A deficient)
--I _think_ D deficiency based on frequency of my son's illnesses, plus my low cholesterol (138), low progesterone (short luteal phase, gets a lot shorter if I get any gluten, and for a while temps were barely above coverline; what else is detoxified via sulfation? I assume I'm okay with sulfation and just don't make enough progesterone)
--my luteal phase is stuck at about 8 days, maybe 9
--I tend to have too many high-estrogen days in my cycle, and this is worse if I get gluten
--I think I'm _not_ magnesium deficient based on the epsom salt taste test, and my son doesn't need mag to go to sleep the way my daughter does
--I need melatonin to sleep, my son too, but I'm down to 5mg each night (was at 8mg for 5 months last fall and over the winter)
--my son and I seem to need a lot (lot) more K2 than normal people, I think it's related to a family history of nosebleeds and easy bruising (no serious health ramifications from this, but it's an oddity)

My son's apparently very, very low-level soy intolerance has gotten worse in the past 2 months (so I actually noticed it, instead of being oblivious) and now I'm concerned something new is popping up (either that, or there's some really low-level soy that's causing problems--but I can't think what that might be, and actually, the symptoms I'm seeing now aren't the soy symptoms, they're sleep disturbances, nap and nighttime). And I'm getting spooked that I need to start tweaking in order to avoid even more of this. I think the current problem is that his circulating toxic load (based on his high vitC bowel tolerance) has gone up and has been up since Sept08 (ish) as our household stress levels went down. So I think good stuff is happening, but I need to figure out how to support him better.

I know I'm blanking on other relevant stuff, but this is it of the top of my head.

I'm giving the kids a fairly normal cocktail of ASD biochem supps, I can list them all with dosages of key stuff, or just what people ask, I don't know how to do this part.

Thoughts? Thanks.

[lil_miss_understood]

I'm hoping to get to bed early tonight. Reflux, nightmares and DS2 have been waking me up repeatedly at night lately so I'm done in. Hoping DH will let me go to bed and bring DS2 to nurse to sleep when he's ready but I'm not convinced that will happen since he's playing online with a friend he hasn't seen nor talked to in 10 years who lives in Japan now.
All that to say I'm subbing but don't let me forget to look back here. My memory's terrible lately.

[kjbrown92]

In my mind, it's all or nothing (like for corn). Either take it all out or don't bother or you won't be able to tell anything. But that's just me. When my DS was little I finally realized that there was vegetable oil in his chewable vitamin and I called the company and it was soybean oil. That tiny amount was enough to get him up 12-14 times a night. So even tiny amounts when they're sensitive are enough.

You're doing fermented foods and probiotics and the healing stuff (bone broth, CLO, etc.), right? I think that has definitely made a difference for us.

How do you know you have "too many high estrogen days" in your cycle?

[tanyalynn]

Originally Posted by kjbrown92

In my mind, it's all or nothing (like for corn). Either take it all out or don't bother or you won't be able to tell anything. But that's just me. When my DS was little I finally realized that there was vegetable oil in his chewable vitamin and I called the company and it was soybean oil. That tiny amount was enough to get him up 12-14 times a night. So even tiny amounts when they're sensitive are enough.

You're doing fermented foods and probiotics and the healing stuff (bone broth, CLO, etc.), right? I think that has definitely made a difference for us.

How do you know you have "too many high estrogen days" in your cycle?

For gluten and dairy, for us it's clearly an all-or-nothing situation. But the thing is, in retrospect, I don't think he just became soy intolerant a month ago when we went to Austin and ate a stew made with tamari 2x/day for several days in a row. I think I was missing something very low-level, very subtle--he'd occasionally get a very faint rash around his mouth, it'd be gone in a few hours, and his bottom might get a bit red (but not always both, I don't think they always went together), but again it'd be gone by the next day. It was so intermittent and so faint that I never connected it to a big allergen like soy until that weekend when it got really, really bad (poor kid's bottom was so red!). We'd eaten the same meal before (it has about a cup of tamari, for, say, 2 nights' worth, so not a trivial amount of soy--and we get traces in various things, the bad, bad frozen French fries I sometimes would get when I was too tired to cook have soybean oil, and we sometimes had soy in other meals in larger amounts too), but I think it took a) lots more soy than either gluten or dairy to cause a reaction, and b) our currently overloaded detox pathways, to see what was going on.

So I think we may be seeing what those annoying doctors who dismiss intolerances and say you don't need to remove all traces are talking about. Maybe I'm wrong, it'll take some time to know. And again--in all honesty, we eat something corn (reading the corn allergy posts has been eye-opening for the past year, and I know my pantry isn't corn-compliant) every day, and in the past, the kids have had days when they've eaten, say, a half dozen corn tortillas--but it was only after my DH bought a new bag of corn chips (and I suspect we're in this more-reaction phase) and we were low on real, cooked food so the kids gorged on them. This one's scarier, because I really don't think I was missing this before, this was too much a staple for us.

My daughter, for example--there have been a few times when I think we got gluten contamination based on either my symptoms or my son's, but I've never noticed anything in her. But taking out gluten really showed improvements for her.

: We go through cycles when we run out of fermented veggies, I've got stuff fermenting now to fix that. CLO is a staple, and yet my best guess is that the lack of lunulae for my kids is a vitamin A issue--I supplement that at a fairly high dose. It is taking a long time, and a lot of supplementation, to correct this stuff. And I know recently he's been low in zinc again, since those ant bites, about 2 months ago. He's putting his fingers in his mouth less now, but it's not quite gone.

When I chart my cycle, I watch how many days I have eggwhite cervical fluid (have you read Taking Charge of Your Fertility? great book even if you don't want to get pregnant, which I'm assuming you don't, because it has all these insights into how our bodies work--I learned a LOT, and actually my messed up cycles were what made me realize I had a more serious issue on my hands than I thought), and I can see that I normally have 2 or 3 days of eggwhite CF but when I get gluten, that goes up to about 5, maybe 6 days--which is caused by estrogen. So as we get closer to menopause, that should naturally go down some, but for some women it goes down too fast (indicating a health issue and/or affecting fertility) and I think I have too much.

[KimPM]

Originally Posted by TanyaLopez

--my son and I seem to need a lot (lot) more K2 than normal people, I think it's related to a family history of nosebleeds and easy bruising (no serious health ramifications from this, but it's an oddity)

This comment is not particularly related to allergies, but ...

Have you or your DS ever seen a hematologist about the bleeding? There are a number of clotting disorders that don't have anything to do with vitamin K. (And they can add to the problems with needing more vitamin K.)

I had the same trouble and mentioned it to the surgeon when I had some nasal work done. After the surgery he said that even he was surprised at the amount of blood. I didn't do anything about it then, but later before my thyroid was taken out I mentioned it to the surgeon and she wisely referred me to a hematologist. It even took him a couple of blood draws and more than a month to figure it out. So here I had a clotting disorder that wasn't discovered until age 35. Go figure. The problem I have comes and goes (most times I have no problems at all) and is considered mild. But still ... there's been a couple of times there that I've had trouble stopping the nose bleeding. Before the diagnosis, I went to an urgent center and they stopped it with silver nitrate. The other time was after the diagnosis. Since getting the diagnosis, I now keep a "rescue" medicine that I've only had to use once so far. If I didn't have that I'd have been back to the urgent center or ER for sure. And that's just for a nosebleed that won't stop. Hopefully I'll never need it for anything bigger, but you never know.

[tanyalynn]

We haven't had real problems, nobody in my family has had excess bleeding after surgeries or labor, things like that, so although I've considered testing, right now I'm not going to pursue it. I think it is possible that if I discontinued our supps and we did testing, something would be atypical. The symptoms I see, in myself and my son and my mom, a few aunts and my grandmother, are consistent with the mildest version of von Willebrand's. Obviously we'd need testing to see if that's what's really going on, but I'd have to stop our cod liver oil and our K2 in order to do that.

This all started because although at first I thought my son's nosebleeds were normal (given most of us had nosebleeds in childhood), I eventually realized they started when I started giving him cod liver oil, and it was the relationship between, A, D, and K that was key (it took quite a while to figure this out, most of a year, really). I've also seen his nosebleeds occur from DHA supps and after a few days we spent lots and lots of time in the summer sun (I figure he was making 5000IU+ of D on each of those days). In order to supplement with CLO at the level I want to, which is about 10,000 IU of A and 1,000 IU of D per day, I need to give my son 7 mg of Thorne's K2, which yes, is an incredibly high amount. This summer I may need to go up to 9 drops--that's where we were last summer.

In myself, I've realized that I don't have to have bruises on my shins all the time. It was normal for me. And it's cleared up some dry skin I've had for a while now. I seem to need about the same amount of K2 per amount of CLO as my son--I wasn't sure I would, I couldn't tell how much is variable between us.

This has been an odd part of our journey. I reserve the right to change my approach to it, I keep learning new stuff, but right now, I think I have a nutritional approach to solving (or at least adapting to) our problem that's working.

[KimPM]

I have mild von Willebrand's type 1. Because of that, I make sure that any DHA supplement I take does not have EPA in it. I've found that the DHA by itself is okay, but the EPA is a real problem. I also don't take any supplemental vitamin E. (The only DHA-only I've found so far is Vitamin Shoppe brand Neuromins.) I also avoid aspirin and NSAIDS. I also shouldn't donate blood (in case I have a bleeding episode and need it myself).

Thankfully, there is an antidiuretic medication that has the side effect that it increases dramatically the von Willebrand factor in the blood. It comes in a nasal spray (Stimate=Desmopressin Acetate) that I can use at home. If I have scheduled surgery, the hematologist arranges to have them give me one dose of it (in an IV) before surgery and one dose later. I suppose I should have one of those medic alert type bracelets too. See, that's the thing that you can't plan - having an accident. But if you have to have scheduled surgery, then I would suggest seeing a hematologist before getting it done. It's actually a relief knowing about it in advance, and sometimes it's hard to catch with just a Willebrand factor level blood test. So, a last-minute blood test may or may not show a problem, but you could still have a problem in the operating room days later.

For women, estrogen levels are correlated with the vWf level. I've noticed that only during the first half of some cycles that I have any issue at all. And maybe only once or twice a year at that. During the second half of the cycle estrogen levels are higher. von Willebrand disorder is often masked by the use of birth control pills, which typically keep the estrogen levels up. (I don't use the pill.) Any scheduled surgery I would try to keep to the second half of my cycle.

Just sharing my experience and thoughts on the subject.

[Theloose]

: Gonna wait to attack any detox stuff till the blood stuff is settled

[tanyalynn]

Cool, can I ask more questions? The cool is for me, and I may need to stop writing abruptly, my son, I can't figure out what he wants at the moment.

Fascinating... EPA. Huh, so I looked at his DHA supp, the one from last summer, and it has almost as much EPA as DHA, and clearly CLO has some too. I want to do some math and see if things are linear. He also got a bloody nose after high-dose Carlson's vitamin A, from fish--I am going to email them to see what DHA/EPA it may have, if they've measured it. It was not listed as an ingredient, but it is from fish, so possible. Hmmm... have you ever supplemented yourself with D? I thought I was getting more bruising from the D, but now of course I'll need to double-check, maybe I tried CLO first? Do you ever supp CLO?

For us, for whatever's going on, I'm giving CLO daily, and the K2 I'm giving is preventing my son from having nosebleeds (I know cause if I forget, well, bad mom moments result .

Need to run, I'm sure I have more question...

[tinyblackdot]

is there any way that all of this stuff is related o some sort of bleeding disorder? I know maybe i sound dumb or crazy here, but howm many of our LOs have bleeding issues?

[tanyalynn]

Cool, can I ask more questions? The cool is for me, and I may need to stop writing abruptly, my son, I can't figure out what he wants at the moment.

Fascinating... EPA. Huh, so I looked at his DHA supp, the one from last summer, and it has almost as much EPA as DHA, and clearly CLO has some too. I want to do some math and see if things are linear. He also got a bloody nose after high-dose Carlson's vitamin A, from fish--I am going to email them to see what DHA/EPA it may have, if they've measured it. It was not listed as an ingredient, but it is from fish, so possible. Hmmm... have you ever supplemented yourself with D? I thought I was getting more bruising from the D, but now of course I'll need to double-check, maybe I tried CLO first? Do you ever supp CLO?

For us, for whatever's going on, I'm giving CLO daily, and the K2 I'm giving is preventing my son from having nosebleeds (I know cause if I forget, well, bad mom moments result .

Need to run, I'm sure I have more question...

[tanyalynn]

drive by more question....

estrogen--does that mean bruising/bleeding is more likely in the days leading up to ovulation?

um.... Don't suppose you've ever taken a high-dose A supp? See, I know what I've done that's resulted in nosebleeds, and I can guess that my grandma's CLO was probably the reason her nosebleeds were so bad, her nose was even cauterized, but I've been guessing at the causality. There are others on the vitamin k yahoo group who need to add vitamin K before cod liver oil--usually it's better the other way. I wonder if it's greater than the usual rate of vwd?

gotta run, and when I said "cool" earlier it was self-centered, obviously, for my chance to learn. Not quite as convenient for you, but I appreciate anything you can share.

[KimPM]

.

[KimPM]

I've been supplementing DHA-only for a long time now, since before I got pg with DS. No extra bleeding effects whatsoever. When I started on that, I felt it was going a bit out on a limb because I could find no information indicating that DHA either is or is not a problem for bleeders. I did find information about EPA being a problem.

I don't do any fish oil type supps at all, so no cod liver oil. I am supplementing D, however. I am sensitive to lanolin (not related to vWD), so I can't do lanolin-based D3, and the D2 I was on for years did nothing for me. (There were no bleeding repercussions from the D2 either.) I was scared to try the fish-based D's but I see no good alternative during the winter. So I tried the Solgar fish-based D3 with A anyway. I called Solgar and asked if it had any EPA or DHA in it....they said if it did then it was not a measurable amount or else it would be on the label.

Back at the beginning of December I started on 2000-3000 IU of D a day (the A was way over the RDA). I did that for about a month or so. Then I switched over to lanolin-based D and discovered I can't tolerate it. Now I'm back to the Solgar fish-based D and down to 1000 IU of D a day (with 60% RDA of A that comes along with it). I didn't have any problems for the first couple months with the fish-based D/A regimen. But....in the middle of February I got the nosebleed that I had trouble stopping. And just yesterday I had another but was able to stop it. It's unusual for me to have two months in a row with bleeding trouble, so I'm a bit concerned now. A couple of weeks ago, I started taking a little bit of vitamin K to see if that would help, but I've not been consistent with it.

Not sure if it's the vitamin D3, the vitamin A, or something else in the fish-based D3/A supplement that's causing the bleeding. I really hope it's not the D. I haven't found a fish-based D without A that also is without SOY :.

I haven't taken high-dose vitamin A supps, but I do eat a lot of vitamin A veggies. I also eat a lot of food-based salicylates. I changed my diet also in December, so I'm probably eating more of those two things...vitamin A foods and food salicylates. So is that the problem instead?

RE: the estrogen...it's well-documented about estrogen and vWD. In fact, the hematologist offered me the pill just because of it : - no thanks. In my case, my biggest risk of bleeding occurs during days 1-6 of my cycle. Stands to reason, since the body is actually trying to bleed at that time.

So the only times I've had nosebleeds are during that time. Except for the big nosebleed I just had in the middle of February...that one happened 2 days before I got my pd. I think in that case the estrogen was going low in preparation for the cycle, and whatever I'm doing (food or supps) got everything loose enough to bleed at that time. Strangely enough I don't seem to have a problem with bleeding just before ovulation. Perhaps its just the way my hormones cycle and maybe they don't dip as low then as it does during the pd. My hormones are a bit out of whack anyway.

Question for you....do you notice a difference between K1 and K2? Does either one help better prevent the bleeding?

Sorry, I don't mean to hold up a good detox discussion. Carry on.

[tanyalynn]

For the vitamin A, I'm not comfortable relying on the beta-carotene in vegetables, the conversion rates seem pretty low, and people like me, with borderline thyroid function, don't seem to convert beta-carotene into A at all. Which is why my kids are so deficient. I've seen conversion ratios from 12:1 (so only 1/12 of the beta-carotene is actually converted into vitamin A) all the way up to 21:1.

I haven't tried high doses of K1, I figured we were doing the K - D - A relationship that Chris Masterjohn talks about in this article...

http://www.westonaprice.org/basicnut...itamin-k2.html

I'm somewhat torn on the supplementation issue. The vitamin k yahoo group uses K2, and with the tie-in to Price's work, that seemed like a good starting place and it's worked for us. So I haven't experimented with K1 at high doses because this is working.. Supps of K1 will be absorbed at much higher levels than K1 from foods, but K2 doesn't seem to have that limitation, and some foods like natto are very high in K2 (but still, the amount I give my son is far beyond that). So part of me thinks that staying with the K2 is more appropriate.

I mean--given that I have health issues affecting vitamin A, and I've seen health issues for my son re: vitamin A, I feel the need to supplement it. And he's low in D, too, I suspect (inference from his health plus inference from my health) so I want to supplement that too. And I need to supplement myself, I'd like to actually be somewhat reasonable if/when we decide to TTC again, someday. So whether it's a good idea or not, I feel like it's my best option for us.

I'll email Carlson's about their vitamin A supp, but if it's standard practice to list if if it's there in any appreciable quantity (for something like DHA or EPA), then maybe I'm seeing a mix of effects. Or maybe the effect from the A is only there with really high doses (my son had a series of illnesses for 2.5 months, and then a bacterial infection set in, and I tried to stop that by giving him a very high dose of vitamin A, around 80,000 IU a day for 2 days--and it worked ) but it caused a nosebleed. So it's not a normal dose.

I need to go read on EPA and K, and check the files in the vitamin K yahoo group, they've got a lot of studies there, if there's vitamin K involved. It really would be fascinating if I've seen two separate things that I linked into basically the same issue. I checked the EPA in our CLO, the kids are getting about 500mg a day in the CLO, and the DHA supp had 70mg in the dose he took (and I added a different DHA supp at the same time, and I don't remember which one or whether it had EPA). So that could be roughly 1mg of K2 per 100mg of EPA, with a bit left over for whatever (if) the A and D are using some as well. This possibility is fascinating.

[lil_miss_understood]

Can either of you suggest to me how to bring up von Willebrand's with my aunt? I'm pretty sure my asking her about some of the symptoms would feel kind of invasive... Should I just outright ask if she knows if she's ever been tested for it?
As I was telling Tanya, she's had nosebleeds requiring hospitalization and she had to stay in the hospital for a few months after her youngest was born (I'm not certain of the reason, but I think it may have had to do with bleeding). She's considerably older than my mom (18 years older) so she's almost like a "bonus" grandma to me, iykwim.

[tanyalynn]

Could you just go with a fairly direct approach? A friend I email with had some bleeding problems that sounded a lot like yours and her doctor found out that she's got a fairly common bleeding disorder... like that, sorta stretching the truth/glossing over details as needed. And tell her that there are fairly easy blood tests to identify this, and if she ever needs surgery or anything in the future, it would be good to know now. Would that work?

[KimPM]

Yeah, I'd go with Tanya's approach. It might feel invasive, but ask anyway. She might be thankful you did. You could also state that there is medication that can be used in bleeding emergencies, and even the nasal spray at home if needed. Just so she knows it's a potentially lifesaving thing to know. Or at least avoiding the hospital. Or she could be doing something like taking aspirin daily as a prophylaxis, which she really should not be doing if she has any kind of bleeding issues.

(I know about the "bonus" grandma thing, I had one of those, too : but she passed away just before she knew I was pg with DS .)

Tanya, I'd be nervous about giving CLO to anyone who has recurrent nosebleeds. But if you are dealing with it by giving K and it's working, then okay.

ETA: I think I'm going to have to start looking for a K2 supplement without the kinds of cellulose I can't tolerate. Ugh. Every time it's a research project.

[Theloose]

Originally Posted by TanyaLopez

Or maybe the effect from the A is only there with really high doses (my son had a series of illnesses for 2.5 months, and then a bacterial infection set in, and I tried to stop that by giving him a very high dose of vitamin A, around 80,000 IU a day for 2 days--and it worked ) but it caused a nosebleed. So it's not a normal dose.

I'm not totally following all the blood stuff but...

Maybe you're leaning on vit A to do a job that's normally spread out over a bunch of nutrients? I know of vit A, zinc and methyl groups are all used to fight illness... How are you on methyl groups? What else is involved in the systems that you're supping vit A for?

[tanyalynn]

Originally Posted by KimPM

Tanya, I'd be nervous about giving CLO to anyone who has recurrent nosebleeds. But if you are dealing with it by giving K and it's working, then okay.

ETA: I think I'm going to have to start looking for a K2 supplement without the kinds of cellulose I can't tolerate. Ugh. Every time it's a research project.

Thorne's liquid K2 is in medium-chain triglycerides (I think it's coconut oil) and mixed tocopherols (I don't know the source). There are 600 1mg drops per bottle, approximately.

I am somewhat torn on the whole issue as well (knowing I have to supp K2 at such high levels in order to supp the CLO) but for now I feel the risks of him _not_ getting a lot of A and D are higher. But at times I'm like : at having to think so hard. Though it's also got me that I may have completely missed the EPA part of this (if that is what is going on) and identified only what may be a relatively small part of the story with the A and/or D. At some point, I need to play around with D only for myself--but I've really been looking forward to starting and increasing _my_ CLO since I really think it's time.