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Everything posted by Caz

  1. Sorry, I have gone off on the "methylation" tangent of late, and only just read your replies. Curious about the NDF Heather - I have read about it on the internet, and they say you have to take with reverse osmosis water, then after first urine, take alkaline water etc - did you do all of that? That seems a bit hard when it is a kid. Has anyone tried PCA rx? or homeopathic remedies? Caz Ausclare - my son had a hair analysis (a couple actually) but has not had the urine path challenge test yet. The kit has been ordered, but not arrived as yet.
  2. Last night I re read the info on methylation and how it relates to phenols/salicylates/amines. For the lay person with no science background except what I learnt (and subsequantly have forgotton) in highschool, it is hard slog! I am going to try and summarise the web site info, and how I imagine this relates to what we are talking about. This is of course my interpretation of someone elses interpretation - so of course, here is the disclaimer: what would I know anyway???? Methylation is the process of "adding" methyls so numerous body reactions can start. (like activating an enzyme etc). This includes turning on "detox" reactions that detox the body of chemicals including phenols. (Just a note, phenols are a broad group of naturally occuring substances - it includes salicylates and amine amongst others) Therefore, if you are phenol sensitive, if you increase your methylation then your body can process more phenols and you should be able to eat fruit/phenols without any problem. This of course, sounds fine in theory, but does it work in practice - who knows? How does histamine fit into the methylation picture? One way for histamine to be deactivated is to recieve methyl groups from the SAMe. When someone is undermetylated there is low SAMe and histamine levels will be higher because of a lack of methyl groups to deactivate them. Where does histamine come from? 1) Bacterial overgrowth can increase histamine levels. (as per article) 2) From food. It says that reactions to histamine can look like allergies but are not true allergies. Therefore you can see a histamine reaction which is just too high levels of histamine, not because an antigen caused an immune reaction to something. Histamine come in 2 forms 1) high amine foods, like fish, cheese, yogourt, dried, cured smiked or processed meats, tomatoes and a few other vegies, some fruit, expecially banana's, chocolate, vinegar, soy sauce, vegemite soup mixes sauces and gravies. Some other foodscause it to be released within the body. These include: additives, raw egg whites, shell fish, strawberries, citris fruits, pineapple, and some of the above foods (I has trouble following this, but failsafe explains amines better) There are some other problem areas, that is benzoates, food colours, nitrates and sulphites and salicylates that affect the bodies ability to break down histamine. So how does fiengold and failsafe fit into the undermethylation picture? If someone has low methylation then you may have high histamine levels and a problem eliminating the additional histamine from foods. How to lower histamine levels? 1) Take antihistamines (not sure if this helps, my kids always go crazy on demazin etc) 2) Take vitamin c - and lots of it. Magnesium also helps with histamine. Take antioxidants, free radicals promote histamine release. 3) Another main mechanism of lowering histamine is by an enzyme produced by the gut mucosa. If you have "gut problems" like alot of TS kids do, then you will have less of this enzyme to deal with the histamine. Inability to get rid of too mcuh histamine would make you reactive to many foods. Another way to lower histamine depends on where in the SAMe cycle you are having problems, it it is in the transsulfication pathway, epsom salt baths help increase the bodies levels of sulphur, and help with the detox process. Another problem to consider in this area is how mercury disrupts the methylation process. Mecury is highly attracted to sulphur. Mercury ties up the sulphur compounds in the doby. Therefore the sulphur reactions will be faulty and it will be hard to fix unless you remove the mercury. The article explains this more. Now here is my interpretation of how this fits: (remember it is a laypersons thoughts) Most kids on the ASD have metal issues. Can't properly process them - this is probably genetic, and then our envirnment is so much more toxic than any in the past. These kids are exposed to so much more. (Walsh'e metallation?? theory) Toxic metals cause gut problems - we have heard that before. Due to heavy metals and gut problems, like yeasts and microbial imbalances, we have other toxic problems from the overgrowth. Yeast and mercury seem to go together as well. Now, we learn about methylation. With heavy metal and gut problems, the methylation will not work so well. Some of the detox pathways in our bodies do not work so well as they cannot be activated. We therefore cannot deal with all the toxicities in our bodies. Some people find that if they remove the phenol groups, the symptoms go away. This would seem that it is because we are reducing the burden on the body, and then it can deal with the other things. How do true allergies fit this picture - when we ingest things that our body does not agree with, we release histamine and/or continue to damage our gut linings/cause more microbial imbalances etc. If we have so much histamine and our bodies cannot detox it, we will have symptoms like stuffy noses/watery eyes/general histamine reactions. In ts could such reactions be tics??? Well, who knows. I guess those being treated at the pfieffer clinic would see a dramatic decrease in tics when methylation is corrected, but then pfieffer does not like to treat tics, and they say they have little success with treating them. It is sooooo complicated. Does no phenol work to reduce this burden on the body and still allow kids to eat normal foods (not artificial stuff as it ways no fenol does not help with these)? It would be great if it did. Can't wait to hear other experience using it..... Caz
  3. DMG = dimethylglycine TMG = trimethylglycine The methylation issue is really heavy going wasn't it! If the histamine connection is an issue for Tourette's (which those who have been to Pfeiffer and had this testing done, it seems to be the case - and in Bill Walsh's info on this web site that talks about neurological conditions, he suggests those with Tourettes suffer from undermethylation), then the whole amine/salicylate/artificial stuff connection comes together after reading this web site. Of course, it is only a hypothesis, but interesting anyway.
  4. Amazingly everyone in my household is happily playing and I have had a few minutes to look into the no-fenol. After playing around and reading lots of links, I came accross this part of the enxymestuff website - by the way, what a fascinting read! That website has explained heaps to me this morning. I will have to continue reading. Anyway, here is the link - it is about methylation Enzymestuff - methylation (if the link doesn't work use the search part of the enzymestuff website and put in methylation) It explained a littlebit more about salicylates/gluten/casien, and maybe how they are all part of a bigger picture, and of course, Pfeiffer's methylation came into play as part of all this. I'm keen to hear opinions on this article. Could simply giving certain supplements and taking certain enzymes eliminate the need for the restrictive diets??????? Caz
  5. I am keen to hear of peoples experiences once they try this stuff! If it helps, then it will be wonderful to increase the diet back to moderately normal. Today I am feeling totally fed up with all of this restricted food and stuff. My 12 year old is normally really good, but last night, he blew his stack over the whole tablet/diet stuff! He said is just sick of it! He said he opens his lunch box and feels abnormal, especially as all his friends have great stuff, and he has rice crackers. Please post your response once you have tried these! Caz
  6. Went back to the dr yesterday to discuss latest test results, and asked again about his latest hair analysis. Dr still thinks there are hidden toxic minerals, even though after 6 months there is still very little metals showing, despite 2 immunisations in that time etc. My son is taking a herbal/antioxidant/chelation combination called oxichel (australian) to help chelate these, but they don't seem to be making any difference for mercury/lead. We used chlorella for about a month but my son hated all the tiny tablets, and he was taking 10 a day as they were sooooooo small. Add those to other tablets and it caused too many issues! I have been reading back over archives about others experience. For those who have tried ndf, what did you think of it, and did the results last? What other things have been tried, and have they worked for mercury etc? Next the doctor wants to do a pre/post chelation urine test to see if he is storing his heavy metals. What are other peoples experiences with this test, compared to their hair analysis tests?
  7. After reading about yeast here a while ago and assuming as my son's cdsa came back negative for yeast that yeast was a no issue for us. Since then I have come to realize that this can still be an issue even if cdsa is clear. After that I am in the process of reading "the yeast connection" by William Crook that I have borrowed from the Library. This book was written back in the late 80's so there is probably more up to date info about now. Something I found fascinating in this book was part of an interview with Leo Galland in which he says yeast plays havoc with the way the body handles magnesium. He says "some of my yeast patients seem to be "sieves" for magnesium. They may require huge does to maintain a normal body level. Moreover, one reason why a chronic yeast infection creates a magnesium problem is that such an infection creates a deficiency of vitamin b6. And vitamin b6 appears to paly an important role in magnesium utilization. So, to get your magnesium and b6 requirements back to normal, you've got to treat your yeast problem" (page 365) No references to research were shown for this interview, but it makes you wonder when magnesium seems so important to our kids! Caz
  8. Ausclare, Where here in Aus did you get aluminium serum testing done? I'm assuming they did a screen for all heavy metals, not just aluminium, or did you suspect that would be high and asked for that particular test. My doctor did hair analysis, but the values were within the normal range, except for cadmium.
  9. I have no idea about protein and growth, but I am guessing that that may be the difference. For many years my son has been semi vegetarian by his choice - does not like meat. I try to camoflauge it, but he still wont eat it. He has always eaten lots of eggs though. Over the past few weeks we have been giving him a protein drink with his breakfast so he is getting a balance of amino acids ( this drink is a casien free, lactose free whey product - tastes semi ok). Often in the past he would quickly eat an apple, or have a piece of toast for breakfast. We are now concentrating on making sure all the kids have a healthy breakfast to give them good nutrients for the day. IN the past the kids would eat a light breakfast, snack at lunch time (often bringing half their lunch box contents home again at the end of school) and then eat non stop from school ending till they went to bed. Maybe the difference is the times they are eating and what they are eating, more than the protein - who knows...... Caz
  10. I agree it would be intersting to see what type of pregnancies others experienced with their kids who have these challenges. Thanks Ausclare again for all the great info, I am trying to eliminate all the artificial stuff first in our families diet. Can't go too fast as my eldest is still wheat/casien free, and he tells me he is starving! Actually I think he has grown at least an inch in the last 3 weeks since he has been off this stuff! We are giving him a protein drink in the mornings to get his protein intake higher, so maybe that is helping him grow as well. Learning about all this stuff is so fascinating! Now I must go out an buy the fed up cookbook. Right now, I don't know where to start for the next step. To Marina, if you check in whilst on holidays in Perth, send me a private message. Maybe we could catch up!
  11. I may be informed, but that is only because Ausclare told me to buy the book! I don't personally have any experience with it, as I am only just beginning. I love to read - problem sometimes is putting it all into practice. There is so much info out there, I wish someone put it all together. About fermented foods, I do not believe they are restricted in the diet because of yeast, it is more that they are high in amines, which some people are sensitive to. Actually Bonnie G says to avoid certain types of amines in her diet for ts. (Is it tyramine?) I read that on her website long ago. Interestingly in the failsafe book it says not to try and do a yeast free diet and failsafe at the same time - I guess if you try to exclude all they both tell you too, you would only eat rice! Failsafe says wheat and dairy are fine, so if you already know that for your kid they are not, then the failsafe diet is probably too restrictive. Simply starting to read labels has been a big jump for me. I always thought we ate quite healthily, and I tried hard for my kids to avoid coloured lollies, etc, but now from reading this book I see that there are many "hidden" additives in things you would least expect. Just about all yogourt here in Australia contains 160b annatto - even the soy yogourt. I guess once you do the diet and elimination then you know if this particular colour is an issue for your kid. This forum is sooooooo helpful! I probably would have carried on thinking I was doing the right thing, if it was not for people here raising issues like failsafe. Last night I actually had my husband read the post about computers/gameboys/tv, and together we discussed it. When I tell him we should try something, he probably thinks oh yes, here we go again. When you put all those stories together it gave so much credibility to the suggestion of a trial. Now we just have to talk with the 12 year old! Wish us luck.....
  12. It's hard to put into a few paragraphs, as the info is contained in a whole book. I have read the book, and am eliminating as much as possible by way of artificial preservatives/flavours/colours and bad antioxidants like bha and bht and aftificial sweetners etc, then we will move onto the others, the salicylates and amines. In a nut shell, vegies that are low in salicylates are: green bean, brussel sprouts, cabbage, celery, chives, choko, dried beans, dried peas, garlic, leeks, lentils, lettuce iceberg, white potato, shallots,bamboo shoots, mung sprouts, swedes. Therefore no corn!!!!! or tomatoes. Fruits are: (only) pears, peeled, juicy ripe or canned in syrup. Grains: avoid all corn prodicts because of salicylates. Ok are rice, oats, wheat, barley, and numerous other varieties of flours etc. Avoid all breads with mould inhibitors etc Meat: beef, veal, lamb, chicken with no skin, and some seafood is ok. Avoid all processed meats, because of amines. Amines are found in food when it ferments or is cooked for long periods of time. Dairy: milk and milk products are ok, and natural yogourt, and icecream as long as they do not have artificial colours and preservatices. cheese has amines in them, but cream cheese/ricotta/cottage etc are ok as long as no preservatives. Eggs are ok, as are soy milks etc, butbe careful of soymilks with certain oils in them. avoid soy sauce, miso, tempeh or tamare as they have amines and glutamates. Drinks: water and soda water are ok, as is milk. Aviod all cordials (coolaid) and juices or flavoured milks. Decaffinated coffee is ok, but avoid herbal teas and normal teas. Canola, soy safflower or sunflour oil is ok, or margarines made from these, but avoid all other oils. Snacks: raw cashews and plain potato chips (as long as no preservatives), and pretzels. Avoid muesli bars, honey flavours, other nuts and spicy flavours. Sugars: white, brown, icing and caster are ok, as are maple, and golden syrup, and most baking aids like baking soda etc are ok, but avoid raw sugar, chocolates, honey and strong flavours like mint. Avoid saliylates in asprin. Avoid colurs flavours in household products like toothpaste etc. Really, it takes so much more to explain the whole thing, and I myself am just getting a grip on it, as there is so much to take in. Apparently the book called, Fed up with ADHD is available at amazon.com. The jist of the diet, is to eliminate everything for 3 - 6 weeks or so, or until you have had 5 good days in a row, then you give a challenge, eg salicylates, overdose them on the high salicylate foods for up to 10 days, and note any changes. If all is ok, then you can reintroduce these foods. Same for amines, and glutamates, then do the food additives in their groups, like colours/sulphates/nitrates/mould prohibitors etc. Go back to original died for however long it takes to settle down after a negative challenge, then try the next group etc. Only do one challenge at a time so you can see what foods do what. The idea behind this is to find out what things your child is sensitive to, so hopefully you will not have to restrict things that are not an issue for them. It all seems a little daunting to me, but we have to try these things to get our answers. The book is great as it gives the authors story about doing this with her own children, which is really motivating. Caz
  13. The body is such a complex thing. I guess that is why is is best not to tinker with some of these things without a doctors guidance, and the relevant tests to back up the diagnosis.
  14. Dumb question - I'm sure this is answered in the archives, but is the CRT screen like a tv screen/traditional computer monitor, and the LCD more like a laptop screen, or gameboy screen? Caz
  15. In the same book I quoted from before, Patrick Holford's "Optimum nutrition for the mind" it says symptoms of adrenal insufficiency are as follows: Depression Difficulty concentrating Short attention span Lack of drive or motivation Rarely innitiates or completes tasks Frequently tired Can't deal with stress Socially withdrawn. Holford days this can be tested with either an Adrenal Stress Index (using a saliva sample) or on a Neurotransmitter screening test. The book says for low adrenal levels, supplement with Tyrosine (the amino acid), after consulting with your nutritionist. He also talks about DHEA. Not sure what that is, but says don't supplement with it unless you know for sure that you are low in it. Don't know if that helps.... It's all so new to me, and lots of the tests Holford mentions are not available here in Australia, probably more available in the states but. Caz
  16. The baby is asleep now, so.... Holford suggests overmethylation symptoms are: More body hair More liklihood of being overweight rare headaches or allergies high pain threshold suspicious nature HIGH COPPER LEVELS extreme fears, phobias and paranoia I believe from what he says, it is more the copper overload causing the symptoms for this profile. Did you go to www.mentalhealthproject.com ? I was fascinated. I did the questionaire, and I know what my problems are, and it picked it perfectly. I suggested a thyroid problem, and yes, I am having issues with this at the moment. My son's came up undermethylated at about 70% and pyroluria only 30% (but i wanted to check it out anyway after all the success's I had heard about here) and when we did that test, it was negative, only 5.4 so I want to ask the doctor for the full blood count as I cannot find anyone here in Australia that does the absolute Basophils or whole blood histamine. First I am trying to get rid of all the additives as per my conversations with Auslare. I can't believe all the additives that cause problems. i thought we were doing really well on cutting the stuff out. We are also trying gluten/casien free, but not really seeing much difference with it. Caz
  17. Before reading the Fed up book I thought I was doing really well. We never buy coloured lollies etc, but now I am looking at the margarine (which is dairy free - but has preservative 202 in it) and the oven fries (have antioxidants in them). Even the yogourt has annatto. I know the book says that if you only do 90% you will not get 90% result you will wont get an accurate result at all, but as we are already gluten/dairy free, I don't know if I can add the salicytates and amines at the moment, my son already only eats a handful of things. I think I will keep going on the gluten/casien free plus no additives at all for the next two weeks and see what results we get, then challenge with the gluten/casien first - I guess we can't do everything at once! Thanks again for all the great info!! PS One last question: How can an aussie kid live without vegemite? Caz
  18. I have been reading a great book called "optimum nutrition for the mind" by Patrick Holford. He is an english guy who I believe was trained by Pfieffer himself. He has a web site called: www.mentalhealthproject.com where you can fill out a questionaire with all your symptoms and it will suggest which tests you should have done. Quite interesting (except is you are answering for a child - it asks questions about your sex life - a bit hard for a 12 year old??!!??) Anyway, he doesn't mention Tourette's at all in his book, but for symptoms of undermethylation it add lots of other symptoms: Headaches/migraines Sneeze in sunlight Cry/salivate or get nauseated easily Abnormal fears/compulsions/rituals Light sleeper Fast metabolism Depression or suicidal thoughts Produce lots of body heat Little body hair and lean build Large ears or long fingers and toes Good tolerence of alcohol Inner tension or driven feeling shy or oversensitive as a child Obsessive or compulsive tendencies At another place in the book he says histamine causes allergic reactions (which we knew, right) but also causes a tendencecy to hyperactivity. He also says you produce too much saliva and therefore tend to have no or only a few cavities. I know at Pfieffer they do a test for absolute basophils, but in Holford's book he says that if you have a standard blood test (I guess this is what we call a full blood count in Australia) and your "basophil count" was high, this is an indicator of high histamine status. His recommendation is 2g vitamin c as this is an antihistamine, 15mg zinc, 5mg manganese and at least 50mg of b6. He said is you have undesirable symptoms, also supplement 500 mg calcium and 500 mg methionine morning and night. He says the calcium releases the bodies stores of calcium and the methionine detoxifies the histamine by ading methyl to it. He goes into more details about overmethylation as well, but my little one is having a hissy fit in the other room, so I must go. Caz
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