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mermaid'smom

I have the CRAZIEST update that may help some of you!!!

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I give a 500mg EPA (looks like it contains ONLY EPA), and THIS which I'm now trying to interpret. It says it has 1070mg long-chain Omega 3 fatty acids, around 900mg of which are EPA and DHA. But looking closer it says it has 3060mg of fish oil total, so...Is the issue with fish oil in general or just with the Omega 3's??

Giving you a link. It doesn't directly answer your questions but it will give you some guidance on the approach the FDA recommends.

 

Dietary Supplements: What You Need to Know

https://www.fda.gov/food/resourcesforyou/consumers/ucm109760.htm

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From your link, under Safety, found here:

 

http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/safety/hrb-20059372

 

"The U.S. Food and Drug Administration (FDA) has ruled that the use of EPA and DHA, the primary omega-3 fatty acids found in fish, as dietary supplements is safe and lawful, as long as daily intakes do not exceed three grams per person daily from food and supplement sources."

 

Which is the same as what my link said; 3gr combined from food and supplements. Mine gave the further breakdown of 1gr from food and 2gr from supplements.

 

Another good page, same link, is the interactions:

http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/interactions/hrb-20059372

 

From the dosing page:

"The below doses are based on scientific research, publications, traditional use, or expert opinion. Many herbs and supplements have not been thoroughly tested, and safety and effectiveness may not be proven. Brands may be made differently, with variable ingredients, even within the same brand. The below doses may not apply to all products. You should read product labels, and discuss doses with a qualified healthcare provider before starting therapy."

 

Emphasis on the last sentence.

Edited by Guest

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Which is the same as what my link said; 3gr combined from food and supplements. Mine gave the further breakdown of 1gr from food and 2gr from supplements.

 

 

 

 

If you eat fish, do you measure the fish oil/EPA/ etc. content in the fish you're eating?

 

I had thought concerns on too much fish eating had to do with mercury and other contaminants, as well as over-fishing (from the pov of fish populations and ocean health) concerns--but not that one would get too much fish oil.

 

I'd also be cautious with supplements. Still, FDA tends to be conservative as to amounts it suggests. I'm old enough to have seen a number of increases in recommended amounts in my iife time (eg folate). Not aware of any times it has revised recommendations downward, but I could have missed that.  

 

Is there a Canadian FDA equivalent?  I'd also be interested in what a Swedish or Icelandic or Japanese equivalent (somewhere that has a lot of fishing, or at least traditionally did) might give as maximum amount of fish oil intake from fish.

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If you eat fish, do you measure the fish oil/EPA/ etc. content in the fish you're eating?

 

I had thought concerns on too much fish eating had to do with mercury and other contaminants, as well as over-fishing (from the pov of fish populations and ocean health) concerns--but not that one would get too much fish oil.

 

I'd also be cautious with supplements. Still, FDA tends to be conservative as to amounts it suggests. I'm old enough to have seen a number of increases in recommended amounts in my iife time (eg folate). Not aware of any times it has revised recommendations downward, but I could have missed that.  

 

Is there a Canadian FDA equivalent?  I'd also be interested in what a Swedish or Icelandic or Japanese equivalent (somewhere that has a lot of fishing, or at least traditionally did) might give as maximum amount of fish oil intake from fish.

The inuit eat crazy amounts! 

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The inuit eat crazy amounts! 

 

 

That's probably true.   From back before they would have been exposed to processed foods, sweets, and before the earth was a polluted as now, anything known about their health physically, mentally, emotionally?

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If you eat fish, do you measure the fish oil/EPA/ etc. content in the fish you're eating?

 

I had thought concerns on too much fish eating had to do with mercury and other contaminants, as well as over-fishing (from the pov of fish populations and ocean health) concerns--but not that one would get too much fish oil.

Yes, that is another issue that carries many warnings. If I remember correctly, the Mayo Clinic Safety page covers that as well. I went through many many more sites besides the ones I linked, so I can't remember exactly where I read what. There are set amounts, particularly for children and pregnant women.

 

I'd also be cautious with supplements. Still, FDA tends to be conservative as to amounts it suggests. I'm old enough to have seen a number of increases in recommended amounts in my iife time (eg folate). Not aware of any times it has revised recommendations downward, but I could have missed that.

The FDA revises what they recommend based on reports. If you read any of the links I provided you would see that the FDA cannot regulate supplements. A few years back there was a huge issue with fish oil supplements, impurities in them, etc. There's a lot to be said about some companies that make supplements! I research mine and our fish oil I order from the US, actually. I also poke ours and squeeze the fish oil into juice so that we don't put into our system things we don't need. I open probiotics and put them in drinks as well. That's just the way I am!

 

Is there a Canadian FDA equivalent? I'd also be interested in what a Swedish or Icelandic or Japanese equivalent (somewhere that has a lot of fishing, or at least traditionally did) might give as maximum amount of fish oil intake from fish.

Health Canada, and they are following the FDA on that ;) I think what might not be clear to some is that the issue in this instance is the EPA and DHA content. The fish oil in broader terms is an entirely separate issue and I'm way too swamped to get into that. We can all do our own research for whatever concerns us, too ;)

 

I can't speak for what they do in the countries mentioned and it doesn't concern me. I am not looking to prove anything, just passing on the warnings so that others can make more educated choices. What I do know though, growing up in the Mediterranean, fish twice a week is the most we ever did.

 

Bottom line, we all do what we feel comfortable with, and I don't gamble with my kids' health.

Edited by Guest

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We have the other issue that we live in the Pacific Northwest. We all remember what happened in Japan in 2011! I'm very cautious with what I buy. I'm also Greek, which means I cook with olive oil, onions, and garlic (all organic). So we have a lot of what he is saying in our diet already, we just follow it in terms of a healthy diet. I use all organic herbs and spices and I use many different kinds. Lots of organic fruits and veggies in our diet as well, and we grow some of our own fruit and veggies too. Supplements to me are just that; supplements.

 

 

 

 

Pretty much same situation here, except that I'm not Greek.  Wasn't cooking with olive oil for awhile due to being under impression that heating is not good for it. But went back to that because everything (nearly) tastes better with it.

 

I am also concerned about effects of what happened in Japan. Mostly I don't talk about it because it seems to get the same negative reactions as ...   well, various other things I won't mention.  We are largely no longer eating fish for that reason, and because of the big die off of various creatures in Pacific, which may be due to a whole big combo of factors.

 

We also have depleted soils for various reasons including heavy rain, so that what should be in whole organic foods, even home grown and fully ripened, is not always there.

 

And, for another "unmentionable," glyphosate which many think to be safe also appears to be a major problem in many ways. Even aside from its own harms, it seems that it causes depletion of (or problems of being able to absorb) various nutrients in some studies I've seen.

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I think both of you mean well!  Though both of you have also written things that could make the other feel bad as to being accused of not doing the right thing for your dc, which none of us, especially those of us trying very, very hard with special needs dc to do the right thing want to hear and maybe are extra sensitive about because it is so hard just as to the basics of parenting plus the issues we deal with.

 

I much appreciated your info and have even decided to order a bottle of inulin powder at this point...after determining that jerusalem artichoke is out of season, and organic jicama unavailable in my area.  I reviewed the info I had pro and con, and decided that on balance, for me, it was worth a try. 

 

At same time, I think the warnings that Marie and others gave that inulin could possibly lead to more growth of bad gut bacteria etc. or that fish oil could be taken to excess is worth being aware of.

 

 

IMO we all are gambling with our children's health.  Driving is a gamble. Allowing my child to go out bike riding is a gamble. Allowing him to ice skate is a gamble. Choosing foods and supplements is a gamble.  Not choosing is a gamble.

 

A friend of mine who has a spina bifida child who perhaps might not have been if they had not followed the then FDA 200 mcg (as I recall) of folic acid protocol also made a gamble that the FDA new better than some friends who suggested that more would be a good idea.  In any case after that child, the next pregnancy included taking 800 mcg or more of folic acid daily which at the time was considered excessive. That baby was normal. 

Pen I am happy that you are trying it.  I will be happier if you see improvements!!  Let me know if you have any questions and I would love to hear about your progress!  :)

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To be clear, this is the sentence that felt judgmental to me. I appreciate you making the effort to show which parts of the protocol may be harmful, I'm sure it will help some people decide whether it's worth a try.

 

Bottom line, we all do what we feel comfortable with, and I don't gamble with my kids' health.

 

 

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I am glad things are going so well, Mermaidsmom! I appreciate the update.

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I think both of you mean well! Though both of you have also written things that could make the other feel bad as to being accused of not doing the right thing for your dc, which none of us, especially those of us trying very, very hard with special needs dc to do the right thing want to hear and maybe are extra sensitive about because it is so hard just as to the basics of parenting plus the issues we deal with.

 

I much appreciated your info and have even decided to order a bottle of inulin powder at this point...after determining that jerusalem artichoke is out of season, and organic jicama unavailable in my area. I reviewed the info I had pro and con, and decided that on balance, for me, it was worth a try.

 

At same time, I think the warnings that Marie and others gave that inulin could possibly lead to more growth of bad gut bacteria etc. or that fish oil could be taken to excess is worth being aware of.

 

 

IMO we all are gambling with our children's health. Driving is a gamble. Allowing my child to go out bike riding is a gamble. Allowing him to ice skate is a gamble. Choosing foods and supplements is a gamble. Not choosing is a gamble.

 

A friend of mine who has a spina bifida child who perhaps might not have been if they had not followed the then FDA 200 mcg (as I recall) of folic acid protocol also made a gamble that the FDA new better than some friends who suggested that more would be a good idea. In any case after that child, the next pregnancy included taking 800 mcg or more of folic acid daily which at the time was considered excessive. That baby was normal.

And then there is this study

 

http://www.webmd.com/baby/news/20160511/too-much-folic-acid-in-pregnancy-tied-to-raised-autism-risk-in-study

 

 

Which prompted me to stop taking folate supplements after the first trimester with this last pregnancy; my levels tested very high and autism traits run in the family.

 

Really all any of us can do is research and then make the best decisions we can given what we know and can learn of both science and our own children.

Edited by maize
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I thought it was funny that Tuesday evening I was at the eye doctor and he said I needed to take Omega3.   I was able to say I had a just purchased bottle in the car.  

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I thought it was funny that Tuesday evening I was at the eye doctor and he said I needed to take Omega3.   I was able to say I had a just purchased bottle in the car.  

Its so weird when that happens!

 

I actually upped my daughters omega 3 a few days ago from 1200mg to 2400mg and OH MY!!!!!!!!!!!!  She is having an incredible week!!  I keep looking at her for cues that she is going to spiral, or crash and put herself to bed.  But nope - she just follows me around asking can we make slime, can I teach her how to wax her legs, can we go to the bookstore...

 

Literally she has come back to life!!!

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I am happy for you and your dd and wish her continued health.

 

Nemechek used to practice in the KC area, about a decade ago. He was affiliated with a major regional hospital, and then went into private practice--I think first with an obesity management clinic and then metastic cancer(?). I remember a kerfluffle where he was censored by FDA about the management of some studies he was running.

 

I am trying to dig up my old files...I think he came to speak at the MPE conference somewhere 2004-2006 and he spoke on the special needs track with the lady from Poss-A-Bilties. I know some of the other ladies from KC are here on this board. Can anyone verify? The first bit about his practice history is all out on the web. The homeschooling lecture bit I am trying to verify--whoever that was that spoke also had a lengthy similar protocol to follow, though at the time he was also focused on drinking RO water only to hydrate the brain.

 

Regardless of whether he spoke at MPE or not, he has a history of creating protocols and making somewhat fantastic claims.

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I am happy for you and your dd and wish her continued health.

 

Nemechek used to practice in the KC area, about a decade ago. He was affiliated with a major regional hospital, and then went into private practice--I think first with an obesity management clinic and then metastic cancer(?). I remember a kerfluffle where he was censored by FDA about the management of some studies he was running.

 

I am trying to dig up my old files...I think he came to speak at the MPE conference somewhere 2004-2006 and he spoke on the special needs track with the lady from Poss-A-Bilties. I know some of the other ladies from KC are here on this board. Can anyone verify? The first bit about his practice history is all out on the web. The homeschooling lecture bit I am trying to verify--whoever that was that spoke also had a lengthy similar protocol to follow, though at the time he was also focused on drinking RO water only to hydrate the brain.

 

Regardless of whether he spoke at MPE or not, he has a history of creating protocols and making somewhat fantastic claims.

I agree that he is making fantastic claims with this protocol. 

 

Its so hard for me because I stumbled upon him in the reverse of probably how many have.  I was doing something that made AMAZING differences in my daughters life and then uncovered that it was this protocol.  So in our case his fantastic claims are proving effective.  But I am a skeptic to the core so I presume that had I come across his claims in another manner I would be looking all side eyes at it.

 

But I really don't know becuase I can't rewrite history to check.

 

But I think I would have probably tried the protocol.  I mean I was the mom in 2015 who was spinning her daughter everyday on an Astronaut board in a therapy that was supposed to repair her vestibular system and help her issues - so I know I am open mided enough to try the thing that no one has heard of! LOL

 

But yes I imagine that the entire protocol is so "fantastical" that it could turn some off.  I get that.  And sadly even I don't think it will help ALL the kids.  But I also hope I am wrong.

 

So far this protocol has "claims" that it can fix my daughter and in fact my gluten intolerance and my carpal tunnel (and a whole host of things I don't suffer from!) and bizarrely enough - it is!  I am not eating gluten and everyday we are getting are daughter back.

 

So I am keeping an open mind that it can fix the world!  I mean people thought Einstein was wacky! lol!

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Well, I think there's a chance both that this protocol is wacky and based on unsound reasoning, and that it is helping (some) people for unknown reasons. Your daughter obviously had issues outside of ASD, related to her gut. You've found that dietary changes have helped her in the past, and now you're making new dietary changes and these are helping her. SOMETHING is going on in relation to her diet, and whether the pieces he's prescribing are all necessary, or only some pieces are, or maybe there are other changes you'd make that could help even more, or be less risky...who knows?

 

The important thing is that you know dietary changes can help her, and that if she reverts on this protocol, you can try another dietary change. There are parents who have seen incredible differences in their kids who suffer from conduct disorder, DMDD, anxiety, etc., after starting seemingly wacko diets. There really is a compelling brain/body connection, and gut issues/intolerances/etc. can really wreak havoc on some kids.

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So true!  That is what I keep saying - even if THIS falls away and she declines again we at least NOW KNOW there is something that can be done to alleviate her issues.

 

But ironically we have completely given her back dairy with no issues.  Still improvements.  She is still GF (but only becuase school is still on for 2 more weeks) but becuase my own gluten intolerance is gone I feel confident that she will be fine with Gluten moving forward.

 

So diet (in this case) isn't what is actually working.  I really think it was soley the dysfunctional gut flora that was the problem.  Of course that means a diet low in carbs and sugar should be maintained!

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I remember a kerfluffle where he was censored by FDA about the management of some studies he was running.

Inspections, Compliance, Enforcement, and Criminal Investigations Nemechek Do Pa, Patrick (FDA)

https://www.google.ca/url?sa=t&source=web&rct=j&url=http://www.circare.org/fdawls3/nemechek_fdawl_20100628.pdf&ved=0ahUKEwi98OOhr8DUAhUMwWMKHSfrBKQQFghBMAM&usg=AFQjCNHHX4XQOFjnKS1Q2Y-vJqGhUAoSjg&sig2=IO_5WzRV9hEtqucABWlwAw

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Canadian Mom of 2 and mermaid'smom, please take future personal dialogue to PM. Thanks.

 

SWB

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Canadian Mom of 2 and mermaid'smom, please take future personal dialogue to PM. Thanks.

 

SWB

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To be clear, this is the sentence that felt judgmental to me. I appreciate you making the effort to show which parts of the protocol may be harmful, I'm sure it will help some people decide whether it's worth a try.

To explain this, it reflects my personal opinion about my own kids, when there are warnings in place. It was not my intention for it to sound as passing judgement on anyone else's decisions for their own children.

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Mermaid'smom, thank you for posting this. We'll definitely be trying it, in the hope that it will help with multiple long-term issues in our family. I've already been avoiding propionate as a food additive, as many food-sensitive folks have noticed a link to brain fog and mood problems, but I didn't think about it being produced in the small intestine.

 

We did have some success in the past with the Specific Carbohydrate Diet (which is basically intended for SIBO), but it's too labor intensive with the size of our family now. And we'd need another fridge just for chilling yogurt, broth, and jello. Ours conked out from exhaustion last time I tried the diet... as did I, LOL. Inulin sounds more feasible!

 

Also, for those who are new to the idea of vagus nerve stimulation - you might check out Dr. Porges' "polyvagal theory." I read his book when it came out a few years ago, and it connected a lot of dots for me. It's been on my mind again recently, to the point where I was thinking about starting a thread about it. So, while I'm not familiar with Dr. N., his model of illness - as you've described it - seems to fit quite closely with the current state of my "Dr. Mom" research.

 

Will let you know how it goes. :-)

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Mermaid'smom, thank you for posting this. We'll definitely be trying it, in the hope that it will help with multiple long-term issues in our family. I've already been avoiding propionate as a food additive, as many food-sensitive folks have noticed a link to brain fog and mood problems, but I didn't think about it being produced in the small intestine.

 

We did have some success in the past with the Specific Carbohydrate Diet (which is basically intended for SIBO), but it's too labor intensive with the size of our family now. And we'd need another fridge just for chilling yogurt, broth, and jello. Ours conked out from exhaustion last time I tried the diet... as did I, LOL. Inulin sounds more feasible!

 

Also, for those who are new to the idea of vagus nerve stimulation - you might check out Dr. Porges' "polyvagal theory." I read his book when it came out a few years ago, and it connected a lot of dots for me. It's been on my mind again recently, to the point where I was thinking about starting a thread about it. So, while I'm not familiar with Dr. N., his model of illness - as you've described it - seems to fit quite closely with the current state of my "Dr. Mom" research.

 

Will let you know how it goes. :-)

YAY!!!  So looking forward to hearing about your journey!!

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So true!  That is what I keep saying - even if THIS falls away and she declines again we at least NOW KNOW there is something that can be done to alleviate her issues.

 

But ironically we have completely given her back dairy with no issues.  Still improvements.  She is still GF (but only becuase school is still on for 2 more weeks) but becuase my own gluten intolerance is gone I feel confident that she will be fine with Gluten moving forward.

 

So diet (in this case) isn't what is actually working.  I really think it was soley the dysfunctional gut flora that was the problem.  Of course that means a diet low in carbs and sugar should be maintained!

 

Diet is connected to gut, so you can't separate them. And it doesn't flow that the cure for gut problems is low carb. What your success with inulin is showing you is that the cure for gut dysbiosis is more fruit, more real foods that are high in inulin.

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Diet is connected to gut, so you can't separate them. And it doesn't flow that the cure for gut problems is low carb. What your success with inulin is showing you is that the cure for gut dysbiosis is more fruit, more real foods that are high in inulin.

I don't disagree with you.  And I think once we CORRECT the problem with high levels of inulin I think it can be maintained life long exactly how you are describing.

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I don't disagree with you.  And I think once we CORRECT the problem with high levels of inulin I think it can be maintained life long exactly how you are describing.

 

Some people are so sick that even doing it slowly, with the small amounts that are in food, can be really rough. 

 

I think the key is to move beyond the pharmaceutical model and realize we had the choice all along. That's the thing about these docs, they find something and they use even natural stuff like pharmaceuticals, using things in isolation, not thinking of the system as a whole or how it could have been done in a whole, restorative way or how it all flows from choice. 

Edited by OhElizabeth

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Some people are so sick that even doing it slowly, with the small amounts that are in food, can be really rough. 

 

I think the key is to move beyond the pharmaceutical model and realize we had the choice all along. That's the thing about these docs, they find something and they use even natural stuff like pharmaceuticals, using things in isolation, not thinking of the system as a whole or how it could have been done in a whole, restorative way or how it all flows from choice. 

I think the sickest need the dose in moderation but eventually need to build up to a dose that is impractical to aquire from food.  Initially it is about building a tolerance but at some point (for many!) the amt required to substantially get the issue under control can't easily be obtained by food.

 

While the most hardcore could potentially stick to that diet it's doubtful that this population (kids with major sensory issues like food aversions) could be successful in that manner initially.

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It has been my experience and have read this from others as well, that they were pleasantly surprised at how well their kids took to a gfcf diet, or even just a basic whole food diet. Many of these kids often have the aversions due to intolerances. Once you get rid of the offending foods or additives etc. the child starts to feel better and will eat whole foods you never thought they would. I never thought I would ever see my kids eating lettuce, yet they are now munching fresh lettuce grown in our garden!

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If one were using something (say a coffee or sugar substitute) that includes chicory as a main ingredient, would that be a source of inulin?

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If one were using something (say a coffee or sugar substitute) that includes chicory as a main ingredient, would that be a source of inulin?

Chickory is inulin so I would say yes!  But the quantity is important!  I am assuming you are talking about Agave?

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Inulin is just one type of fibre, where equally important. Is the type of fibre in Rolled Oats. This is what the Lactobaccilus family of bacteria grow best on.

But we need a multitude of different types of bacteria in our digestive system.

For these bacteria to grow and multiply, they attach themselves to certain types fibre.

Just like molluscs attach themselves to reefs.

 

Though with a multitude of different bacteria, the main concern. Is to have a diet with a broad range of foods and fibres.

To focus on any particular type of fibre?

Misunderstands the ecology of digestive system.

 

But what is more important, is to continually provide a diverse range of 'beneficial bacteria and enzymes'.

 

 

 

 

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Agree with Geodob. This is why I don't follow diets like the Paleo. I use oats weekly in our diet, cooked and raw.

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Inulin is just one type of fibre, where equally important. Is the type of fibre in Rolled Oats. This is what the Lactobaccilus family of bacteria grow best on.

But we need a multitude of different types of bacteria in our digestive system.

For these bacteria to grow and multiply, they attach themselves to certain types fibre.

Just like molluscs attach themselves to reefs.

 

Though with a multitude of different bacteria, the main concern. Is to have a diet with a broad range of foods and fibres.

To focus on any particular type of fibre?

Misunderstands the ecology of digestive system.

 

But what is more important, is to continually provide a diverse range of 'beneficial bacteria and enzymes'.

I think that will be helpful advice once I halt the overgrowth of this particular bacteria.  But for now adding in all the bacteria made things worse for us.  Like many have said - not one size fits all!

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Overgrowth of any particular bacteria, can only be resolved by restoring a diversity of bacteria.

 

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Overgrowth of any particular bacteria, can only be resolved by restoring a diversity of bacteria.

Agreed! Otherwise, you could potentially be creating different, new problems.

Edited by Guest

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I think the sickest need the dose in moderation but eventually need to build up to a dose that is impractical to aquire from food. Initially it is about building a tolerance but at some point (for many!) the amt required to substantially get the issue under control can't easily be obtained by food.

 

While the most hardcore could potentially stick to that diet it's doubtful that this population (kids with major sensory issues like food aversions) could be successful in that manner initially.

I would add that many children in this population also have sensitivities (diagnosed or undiagnosed) to phenols and other chemicals in natural foods, especially fruits and herbs. Too much insoluble fiber can also be a problem for little tummies. So just piling on more fruit and veg isn't always a benign approach either.

 

With some of my family members, we have to limit nearly all fruits, some vegetables, and high-fiber foods such as ground flax. This makes it a challenge to get standard amounts of certain nutrients, let alone therapeutic doses. So while I'm all for the holistic approach, sometimes it isn't practical. Depending on the situation, refined foods such as juices, oils, and powdered extracts can be a helpful middle ground between whole foods and pharmaceuticals.

 

Speaking of which, it turns out that inulin powder is hard to find around here. I ended up ordering from Amazon, and was going to get the NOW brand, but after reading reviews, went with a slightly more expensive one that's made with chicory from Belgium. According to a review, some of the cheaper brands use chicory from China. Just FYI, in case anyone else shares our preferences in that department.

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Overgrowth of any particular bacteria, can only be resolved by restoring a diversity of bacteria.

Well, yes, but this is far easier said than done, if there really is a whole invisible ecosystem that's out of whack. As I understand it, the organisms that are in excess are likely to have set up conditions that perpetuate their own dominance. We might not be able to give the others enough of a foothold through ordinary means. This is why the main book on SCD is called "Breaking the Vicious Cycle."

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“Παν μέτÏον άÏιστον___“Pan metron aristonâ€: Everything in moderationâ€

 

This is what one of my wise ancestors said and something followed by the Mediterranean diet. It is what I try to follow with most things in my life as well.

 

The healthy way to see it is in terms of the whole diet. When we went gluten and dairy free, I had very specific reasons and the autism was not at the top of that list. I have already shared that up thread. I have replaced the grains with gluten free grains; a variety of them. I also use legumes and legume flours. I have replaced the dairy with calcium fortified nut beverages, nondairy yogurts, and non dairy cheeses. Our grocery bill has practically doubled. I cut all colors and preservatives/ additives. We buy primarily organic produce, GMO-free, and natural brand cold cuts. I have done the best in my power to provide my kids with a well balanced diet while forming habits that I hope will follow them throughout their life. I can only speak for myself when I say that to me, that's the best balance in life.

Edited by Guest

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I would add that many children in this population also have sensitivities (diagnosed or undiagnosed) to phenols and other chemicals in natural foods, especially fruits and herbs. Too much insoluble fiber can also be a problem for little tummies. So just piling on more fruit and veg isn't always a benign approach either.

 

With some of my family members, we have to limit nearly all fruits, some vegetables, and high-fiber foods such as ground flax. This makes it a challenge to get standard amounts of certain nutrients, let alone therapeutic doses. So while I'm all for the holistic approach, sometimes it isn't practical. Depending on the situation, refined foods such as juices, oils, and powdered extracts can be a helpful middle ground between whole foods and pharmaceuticals.

 

Speaking of which, it turns out that inulin powder is hard to find around here. I ended up ordering from Amazon, and was going to get the NOW brand, but after reading reviews, went with a slightly more expensive one that's made with chicory from Belgium. According to a review, some of the cheaper brands use chicory from China. Just FYI, in case anyone else shares our preferences in that department.

Oh that is good to know!

 

And yes it is very short-sided to just think a diet heavy in veggies is a good idea for everyone.  It just isn't that simple. 

 

I came here to share our story.  As my title says - it may help SOME of you.

 

There are a few on here who are ruffled by this - fine with me you have made your case over, and over, and over and over.  I think we can all agree that you have made the "risks" known.  We get it.

 

As well,in spite of all the links and speculation we continue to see incredible gains and successes

 

At this point there is nothing left to squabble about - let the people decide what suits them.  Try it or not.

 

Happy to answer any questions from those who are giving it a whirl.  As well going to look up that Inulin and see if it ships to Canada!  Thanks :)

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I would add that many children in this population also have sensitivities (diagnosed or undiagnosed) to phenols and other chemicals in natural foods, especially fruits and herbs. Too much insoluble fiber can also be a problem for little tummies. So just piling on more fruit and veg isn't always a benign approach either.

 

With some of my family members, we have to limit nearly all fruits, some vegetables, and high-fiber foods such as ground flax. This makes it a challenge to get standard amounts of certain nutrients, let alone therapeutic doses. So while I'm all for the holistic approach, sometimes it isn't practical. Depending on the situation, refined foods such as juices, oils, and powdered extracts can be a helpful middle ground between whole foods and pharmaceuticals.

 

Speaking of which, it turns out that inulin powder is hard to find around here. I ended up ordering from Amazon, and was going to get the NOW brand, but after reading reviews, went with a slightly more expensive one that's made with chicory from Belgium. According to a review, some of the cheaper brands use chicory from China. Just FYI, in case anyone else shares our preferences in that department.

Can you share the name of the brand you bought?  Want to post it on the FB group!  Thanks :)

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I am not sure how the doctor meant this, but my interpretation was this was a Healing Time diet for the gut, not a forever diet.   Similar to a doctor saying "Eat bland foods and drink clear liquids" for a certain time period.  Then as things start to heal, you can start to return to normal.   Like the OP returning dairy to her daughter's diet.  

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The brand we ended up getting is Swanson.

 

Short term update: I took one scoop (5 g) the first evening, and had some pretty bad nausea starting a few hours afterward. It went away in a couple of hours. The next day, I cut back to 1/4 scoop, then took 1/2 scoop today, with no noticeable problems. My digestion does seem better than usual. Probably too soon to tell about anything else.

 

I'm surprised that there are any effects at these doses, as it turns out that inulin was an ingredient in a GF bread we used to use, and I never noticed anything for better or worse. Maybe it was cancelled out by all the other junk in the bread? Anyway, I'm only going to aim for 5 g total per day, as my midwife isn't keen on my going higher. Some medical sites have specific warnings against inulin (or chicory) during pregnancy and lactation. Then again, Bayer makes a prenatal fiber gummy that contains 4 g of it. So it seems that the medical establishment has no consistent position on that.

 

The children all started with 1/4 scoop, then the older ones went up to 1/2 scoop today. Not much to say about them, except that the ones who are most difficult might be being a bit extra-difficult, but nothing extreme. Will report back in a couple of weeks.

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The brand we ended up getting is Swanson.

 

Short term update: I took one scoop (5 g) the first evening, and had some pretty bad nausea starting a few hours afterward. It went away in a couple of hours. The next day, I cut back to 1/4 scoop, then took 1/2 scoop today, with no noticeable problems. My digestion does seem better than usual. Probably too soon to tell about anything else.

 

I'm surprised that there are any effects at these doses, as it turns out that inulin was an ingredient in a GF bread we used to use, and I never noticed anything for better or worse. Maybe it was cancelled out by all the other junk in the bread? Anyway, I'm only going to aim for 5 g total per day, as my midwife isn't keen on my going higher. Some medical sites have specific warnings against inulin (or chicory) during pregnancy and lactation. Then again, Bayer makes a prenatal fiber gummy that contains 4 g of it. So it seems that the medical establishment has no consistent position on that.

 

The children all started with 1/4 scoop, then the older ones went up to 1/2 scoop today. Not much to say about them, except that the ones who are most difficult might be being a bit extra-difficult, but nothing extreme. Will report back in a couple of weeks.

You should totally join the FB group!  As time has passed the general consensus is starting low and slow for the very reasons you are describing!  The daily dose is definitely something you should work towards as opposed to starting there!  Looking forward to hearing how you progress!

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“Παν μέτÏον άÏιστον___“Pan metron aristonâ€: Everything in moderationâ€

 

This is what one of my wise ancestors said and something followed by the Mediterranean diet. It is what I try to follow with most things in my life as well.

 

The healthy way to see it is in terms of the whole diet. When we went gluten and dairy free, I had very specific reasons and the autism was not at the top of that list. I have already shared that up thread. I have replaced the grains with gluten free grains; a variety of them. I also use legumes and legume flours. I have replaced the dairy with calcium fortified nut beverages, nondairy yogurts, and non dairy cheeses. Our grocery bill has practically doubled. I cut all colors and preservatives/ additives. We buy primarily organic produce, GMO-free, and natural brand cold cuts. I have done the best in my power to provide my kids with a well balanced diet while forming habits that I hope will follow them throughout their life. I can only speak for myself when I say that to me, that's the best balance in life.

 

We don't eat dairy either (for ethical reasons), and I can tell you that it is a heck of a lot cheaper once you just give up all the fake-dairy stuff.  It's just nuts and tapioca flour anyway, for the most part.  

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Guest

I hear you on making things from scratch. No way, no how, no time, not happening. :)

I cook and bake from scratch, even our gluten free bread. I can only break myself into so many pieces to attend to everything though. We all do the best we can :)

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An article from 2007; apparently inulin has some characteristics in common with the oligosaccharides in breast milk, and a modified type of it is added to baby formula in Europe.

 

http://m.jn.nutrition.org/content/137/11/2585S.long

 

Among commonly eaten vegetables, asparagus seems to be one of the highest in inulin, with 2-3 g per 100 g serving. Interesting, because we ended up eating steamed asparagus almost daily when we were on the SCD (which forbids inulin as an additive, but allows just about all non-starchy vegetables). A few of us were practically craving it. Ah, the memories of raiding the fridge in search of cold asparagus, to eat sprinkled with salt. Though I can't say it compensated entirely for the lack of chocolate, LOL.

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Well, it's only been about a week and a half, but we've been seeing some interesting developments.

 

Middle schooler (multiple food chemical sensitivities, social delay/lack of motivation, often seems "in a fog"): more interactive and communicative with family (albeit often grumpily or awkwardly), increased appetite, seems to have grown several inches in the last few days

 

Early primary grader (salicylate sensitive, often fearful/angry, hard to discipline): much happier & more confident

 

Toddler (no known issues): suddenly began to go potty independently for #2, after months of only trying on our initiative and without success; has also started communicating enthusiastically about the process, LOL

 

No changes noticed in the others, except perhaps one or two are waking earlier.

 

This is just with inulin, on the lower end of the suggested doses; we haven't tried combining it with the fish oil yet. Will probably start that over the weekend.

Edited by ElizaG
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