My Fear of Failure

[Bernard]

Casein is a protein found in cow's milk (dairy). It's the protein that is responsible for the unique ability of cheese to melt into a gooey consistency.

Goat's milk has only trace amounts of it.

[Zoe]

Hi Riva,
It would be great to exchange recipes, you can contact me private email if you want. I have mostly cookie recipes. I have made up a bunch of cookie bar recipes if you want to test one ( I was working on a recipe book). What have you got? I could use more main dish recipes too.
Zoe

[Zoe]

Hi Marian,
http://www.celiac.com/st_main.html?p...58107055284.dd
This site has a lot of information, diet, recipes, and about celiac disease [relevant to anyone intolerant to gluten, celiac or no]
Corn, which forms a corn gluten is difficult for a lot of folks with gluten intolerance, so you may want to eliminate corn products too.

http://www.celiac.com/st_prod.html?p...44107491667.4a
This article is by one of the researchers and his theories on why so many are intolerant to gluten. A group in Naples were doing wonderful studies in the early 90s showing a link between gluten sensitivity and seizures. They were being ignored or discounted here until about 2000-2001. A university in the US did random sampling of blood donated to the Red Cross and found something like 1 in 150 carry the markers for gluten intolerance. But, as the article above suggests, sensitivity may also be due to overloading fragile digestive systems with more than they can handle.


http://www.celiac.com/st_prod.html?p_prodid=118
This link is to a study on celiac disease and epilepsy.

I don't get too hung up on allergy vs. intolerance. For any number of reasons someone may not be able to break down and properly digest gluten. There are a number of theories on this. The disorder is now clearly linked to seizures and no harm will be done by trying the diet if all the important nutrients are included.

http://search.eurekalert.org/e3/quer...v3rel&x=9&y=15

This link is to a search on gluten at the National Academy of Sciences press release web site. It gives a good picture of research in this area. One study I saw there suggests the problem may be triggered when wheat\gluten products are introduced at too young an age when an infant has not yet developed the enzymes needed to break down the gluten.


Brain White-Matter Lesions in Celiac Disease: A Prospective Study ...Celiac disease (CD), or gluten sensitivity, is considered to be a state of ... Neurologic complications occur, especially epilepsy, possibly associated with ...
http://www.pediatrics.aappublication...full/108/2/e21


One problem I ran into was not planning out my diet carefully before I started. I needed to have snacks on hand in between meals so I didn't cheat and grab a doughnut, or peanut butter crackers, my downfall. Having meals planned ahead of time and having the gluten free snacks with me during the day made it much easier to switch.

http://dogtorj.net/id16.html
And don't forget to look at the GARD diet that Riva is finding helpful, which eliminates gluten, soy, dairy and corn-really not that difficult if you plan it out in advance. I wonder if the damage from gluten intolerance isn't from causing too much glutamate to accumulate.

Zoe

[Bernard]

I wonder if the damage from gluten intolerance isn't from causing too much glutamate to accumulate.

Potentially Related:

• Magnesium deficient foods, magnesium deficient people
• Magnesium is a powerful glutamate inhibitor

[RobinN]

In this experiment you will make a "white glue" using the protein in milk called casein. The casein is separated from the milk by coagulation with acid(vinegar) and heat. It is collected by precipitation and filtration. After the excess acid is neutralized the product that remains is like a commercial white glue.

http://www.ga.k12.pa.us/studentlife/us/KTK/Glue/

Seems that the company split in two when there was concern that Elsie the cow was also known on the glue bottle... oh, silly me... that is Elmer. Guess they are brother/sister.

Certainly makes one question who the smart one was that thought cows milk was good for baby humans.

[Zoe]

Right, that and homocysteine accumulation, which is linked to seizures and cognitive disorders too.
http://www.patrickholford.com/conten...d_Content=1010
I haven' t read this book, but it looks good.

[RobinN]

Hey Zoe there is a problem with the link above. Can you double check it?

[Bernard]

The link worked for me. What did you see when you tried it?

[RobinN]

Not sure what I saw Bernard, but thanks to your presence it works just fine.

...get a techie in the room and everything works great...
(my son says.."Moooommm.. don't call me until you restart your computer")

[RobinN]

Zoe - I have heard of this but not related to seizures. Now you have peaked my interest, and I was searching Rebecca's blood tests and don't find it on the list. Is it listed as something else?

[Stacy]

Hi all. Welcome to the newbies of the forum and I do need to apologize for not getting back sooner. I had 6 seizures and spent 2.5 days in the ER. I woke up with a huge tube down my throat and my wrists bound to the bed. That's another story for another time..

I am personally very scared that this will happen again, only next time I will not live to tell about it. I am trying to overcome this fear, and so far, I'm doing much better. At night, I light a candle, turn the lights out, and stretch and then relax, concentrating on nothing. The two halves of my brain do not communicate well, but we are teaching them to do this. My seizures are always triggered by my period. ... hormones ... and stress. Tracking everything was the best thing to do.

As for food. You are what you eat. Our entire family is going to stay away from dairy for the next week or two, hoping it will affect my little one's eczema.

[Shelley]

The link worked for me. But its just an ad. I want useful info, not another sales pitch.
Shelley

[RobinN]

Shelley - how about this one
http://www.homocysteine.net/what-is-it.asp?lang=EN

Stacy - Good Morning, nice to see you up and about.
What an ordeal you have been through. The fear is certainly understandable. I hope with time it will diminish.

I thought Rebecca's seizures were hormonally and stress related exclusively, however this past month they have been all over the page. I can't figure it out.
Intestinal issues for sure, and that can throw off the nutritional side of things.

I hope the elimination of dairy helps you solve other issues. It seems to help many in the GFCFKids yahoo group that I read. Some see immediate results and others it takes time. So I would continue far beyond the time limit that is recorded for casein in the system. I know Rebecca has not had a flare up since we went on the elimination diet.

[Shelley]

Try this:<http://lpi.oregonstate.edu/>. Its the website by the Linus Pauling Institute. I keep looking for more nutrition foods as opposed to supplements. I would like to see more weblinks, if people have favorite sites, without ads of course.
Shelley

[RobinN]

I agree with you I don't like ads either, but sometimes that is the only way these sites can be kept up. For me, I look past the ads and look for relevant information. I find a word or words that are new to me. These lead me on a journey of explanation and exploration. Some even led me to this group.
I believe there is agreement that nutritional foods would be the best way to get our needs met. However, my take on this is that when a body is stressed to its limits, there are times when it can not convert enough of the adequate nutrients to heal. That is when the supplements are needed. Take for example, DHA, Omega 3's, one would have to eat fish a few times a day to get enough. Might have worked for our ancestors that relied on this diet, but unfortunately we have evolved far too far away from that, and we have introduce to many toxins to make it feasible. So I supplement my daughter with the pill form of this.
When you find your self in the ditch, you need a ladder to climb out. That is how I see the supplements I give. Getting out of the ditch, at the same time that I am buying more organic local produce, and eliminating the modern teen diet.

[RobinN]

BACKGROUND: Vitamins have been reported to be effective in controlling certain types of seizures and to prevent some of the harmful effects of antiepileptic drugs (AEDs).
Fifteen studies met our inclusion criteria and were of poor methodological quality. None described randomization methods and most enrolled small numbers of participants.
AUTHORS' CONCLUSIONS: In view of methodological deficiencies and limited number of individual studies, we have found no reliable evidence to support the routine use of vitamins in patients with epilepsy. Further trials are needed, especially to assess the utility of vitamin D supplementation to prevent osteomalacia and the role of vitamin E on seizures and thiamine in improving cognitive functions.

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

[RobinN]

Right, that and homocysteine accumulation, which is linked to seizures and cognitive disorders too.
http://www.patrickholford.com/conten...d_Content=1010
I haven' t read this book, but it looks good.

I was doing some more searching and came across this connection to this discussion:

The coenzyme form of vitamin B12 is known as methylcobalamin or methyl B12. It's the only form of vitamin B12 which can directly participate in homocysteine metabolism. In addition, converting homocysteine to methionine via methyl B12 generates an increased supply of SAMe (S-adenosyl methionine), the body's most important methyl donor. Indeed, some of the benefits of methyl B12, such as protection from neurotoxicity, appear to derive from increased production of SAMe8, 9. Methyl B12 has also been reported to be neurotrophic or growth-promoting for nerve cells10, 11, a property which may help regenerate central and peripheral nervous tissues damaged in disorders such as amyotrophic lateral sclerosis12 and diabetic peripheral neuropathy13.

http://www.health101.org/art_methylcobalamin.htm

This is what is being recommended by Stan Kurtz in the autism community. They see cognitive improvement, speech and language, eye contact etc.

I can just see me trying to explain this to Rebecca's neurologist

[Zoe]

Hi Robin,
I just tested the link and it worked. Try the cut and paste into your address window.

http://www.patrickholford.com/conten...d_Content=1010

[Zoe]

This study is really off base. I will take some time to find you other information as some of the foremost researchers in the field are now advising supplements in hopes of preventing some of the anti-epileptic drug side effects, like elevating homocysteine levels and osteoporosis.

[POSITIVEPERSON]

Hi Zoe : would love to exchange recipes with you !!!!!!!

my email is fourstar1@earthlink.net

Riva