| Author | Message | ||
| Krista |
Hi everyone, I've been lurking and reading like crazy the last few days. Ironically, I have Deb's book (ordered it back in May 04), but was diagnosed with gluten intolerance in June and so decided that all my symptoms must be due to that issue. Only problem is, I've been fanatical about the gluten-free diet all this time, and I still have severe fibromyalgia flare-ups, headaches, aching, burning feet, intermittant tingling extremeties, severe crashes and almost constant fatigue, exercise intolerance, digestive problems, and the list could go on. I thought I just had to be patient and wait for all those tons of vitamins my holistic doctor had me taking to work, because I assumed I had severe nutrient deficiencies from the celiac disease. But now I am not so sure. Many of your symptoms sound an awful lot like mine, and so a few days ago I cut out all my supplements (gelcaps, of course). I had already been eating an organic, almost totally unprocessed diet, but noticed every time I added another supplement like my doctor wished, I'd usually feel worse instead of better. I somehow ended up on dogtorJ's site, and then a light flashed on and I've ended up here, reading everything I can. So here's what has happened so far: The first couple of days off my supplements and eating NOTHING that could possibly have added glutamate (unless it was Auxigro-d) I felt great. I slept well for the first time in several years. But the last couple of days, I have had severe pain again and could not sleep well. I did eat some organic Earthbound farms baby romaine salad (in the plastic rectangular box) from Whole Foods, and some cut up carrots and broccoli from the same company. I suspect these things, because I did not eat anything else that should have been a problem (wild-caught Alaskan salmon, organic, free-range chicken, organic brown rice). I had only olive oil on the salad. But I also question whether this new flare-up and insomnia might be due to stopping my St. John's Wort. I had just begun taking it about a month ago, and it was the first supplement that really seemed to help me tremendously. I guessed that was due to the increase in circulating serotonin it supposedly promotes. I've read the few posts here that mention this herb, and the consensus seemed to be that it was detrimental to those with glutamate sensitivity, since it increases intracellular glutamate by inhibiting uptake. However, after trying to struggle through a bunch of scientific literature on this subject, I can't really figure out if it is a problem or a benefit. For example, the following statement from this review of the literature: http://manek.net/health/St%20John%27s%20Wort.htm "A team headed by SS Chatterjee at the Pharmacology Department, of Dr. Willmar Schwabe GmbH & Co., Karlsruhe, Germany (a private company and manufacturer of one of the most widely used and best tested SJW products, Jarsin (TM), a methanol extract of SJW also called LI 160) found that not only did hyperforin inhibit serotonin, dopamine and noradrenaline reuptake, but it also inhibited reuptake of GABA and L-Glutamate, the two major inhibitory (or "calming") neurotransmitters in the brain." L-glutamate is calming? Seems to contradict everything I've learned so far. Of course, in another place, they say it enhances levels of L-Glutamine in the brain, which as I understand it, is a different (but related) thing. I'm sorry this is so long, but can anyone help me understand this? I really need to know what to do, because the St. John's Wort really seems to help me very much with my sleep, and therefore with my pain and fatigue, but I don't want to take it if it will harm me long-term. (I've been pouring it out of the gelcap into water and drinking it. The only other ingredient is magnesium stearate). Thanks for any help you can provide on this, and any other advice you might give as to how long it takes to feel better with pain, sleep, and fatigue if glutamate sensitivity is the cause of your FMS. I am more and more certain that it is, for me. I also must add that you people here really amaze me. I've been doing so much intensive research on my own, and feeling rather alone in it all, and then I find that you are all here helping others figure these things out. I want to express my extreme gratitude for what I've already learned. It gives me hope I might be able to have a real life again. -Krista | ||
| Krista |
Oh, excuse me, I forgot one of the most important symptoms: severe and frightening heart palpitations, which went away when I quit taking my supplements a few days ago. They came back very mildly with this latest flare-up (after eating the Earthbound Farms produce). -Krista | ||
| Deb A. |
Krista, I can't answer your question about St. John's Wort, but I know that it helps a lot of people. Just keep taking it out of the gel cap or use a pure liquid extract. As for the latest reaction you had, there is a good chance that your salad greens and vegetables were spayed with AuxiGro, which is widely used on organic produce, since organic growers prefer "natural" sprays. But it is 30% glutamic acid and it does not wash off as other pesticides can. I buy produce that is treated with traditonal sprays and wash them well in a bowl of warm sudsy (Dawn) water and rinse very well. I don't have a lot of luck with carrots, since more and more root vegetables are being sprayed with AuxiGro or copy cat metabolic primers. The bugs are smart...even they won't touch a potato or carrot sprayed with AuxiGro. I am so happy that you found us here. And I am always so relieved when I talk to yet another fibromyalgia sufferer who is willing to chuck their pills and supplements and get to the root of their disease, which is now an epidemic in this country. So many FMS patients get caught in the drug/herb supplement cycle and keep trying new ones that this or that doctor recommends. They are naturally looking for that magic pill for their pain. It's similar for people who are told they have celiac disease. Of course they are reacting to the wheat...but what they don't understand is that wheat has more glutamic acid in its gluten protein than soybeans. In addition to getting a lot of glutamate from wheat itself, most people rely on white flour, most of which has malted barley flour added, which is there for one purpose. It is extremely high in glutamate and when added to wheat flour, its sweet flavor gives wheat a longer shelf life. Hope we can help you Krista. That's my oldest daughter's name.  | ||
| Krista |
Well! Another Krista! Tell your daughter I said Hi. There aren't too many of us out here! Thanks so much for your response. I found it quite interesting, particularly in light of the info. on dogtorJ's site, which is what originally turned my lightbulb on to make me think "hmmm. . .gluten and glutamate. . .wonder if my intolerance to one relates to an intolerance to the other." Then there are my allergies, as identified by an ELISA/ACT test and other blood tests: Parmesan cheese, bananas, pears, canola oil, benzaldehyde (in fake vanilla flavoring and scent), MTBE (a gasoline additive), nitrites, lots and lots of different molds and fungi, and lots of trees. Another test showed antibodies to soy, milk, and eggs also. No antibodies to wheat, but I'd been gluten free for awhile at testing time. So to me now, the links are just too obvious to ignore. And I am really so sick of all the new supplements to try, all the things that seem to help at first then make me worse. I am beginning to think that MSG and other additive sensitivity is the ONLY resonable explanation for all this. I think you are right about the Auxigro on the veggies. I seem to still be having the reaction (ate them on Sunday). I hope it's over soon! I've decided to only buy local produce in season, and try to subscribe to a CSA farm this year if possible, after I talk to growers about what they use on their produce. Anyone else had luck with this approach? I'll also try to grow some of my own, if I get more energy back by eliminating MSG! Thanks again for your help, Deb A. I am so grateful for your book and what you have done here that I cannot adequately express it. And any other advice from anyone will be most welcome as I try to do this. I will try to report in so I won't feel so alone and so you who have been there can help me through it. Hopefully I can do the same someday. -Krista | ||
| Carol H |
Krista, Welcome! You came to the right place. Lots of helpful folks here. DogtorJ's site is also great. It made me re-examine the role of wheat in the MSG sensitivity area. When you consider that many MSG sensitive people react to wheat, or are allergic to it, or have celiac disease - it makes you wonder. (I am allergic to wheat, also) And as DogtorJ points out - our pets didn't get our diseases until we started feeding them things they never ate before - like wheat. Question, what recipe books for celiac disease do you use? My favorites are the Gluten-Free Gourmet bakes bread and More from the Gluten-Free Gourmet. (I just leave out gelatin or egg replacer and I use almond meal in place of non-fat dry milk) Another flour beside rice is sorghum. I just tried a recipe that uses sorghum flour for scones (it was on the package) They were easy and really delicious. Has anyone here reacted to sorghum flour? I don't react to MSG like I used to so I need some feedback from you all. | ||
| Deb A. |
Carol, when you say you don't react to MSG like you used to...do you mean not as severely, or that you don't avoid it as much as you used to. I'm a little confused...that's not unusual! I too, do better when I don't ingest a lot of wheat products. I think the glutamate in wheat just tips the scales sometimes. I do okay with just so much, and then if I overdo, I can't think as clearly...same with dairy products, which are also high in natural glutamate...after all, the natural glutamate gets into the bloodstream eventually, even if it does take a little longer. | ||
| Krista |
Hi Carol H, I just came back from msgtruth.org, just now. What a great site! So much really interesting info. I think I might have an insight into my husband's migraine problem from reading the idea of exercise-induced asthma being related to CoQ10 deficiency and glutamate. My husband's migraines are exercise-induced! Hmmm. As for recipe books, I have the Gluten Free Gourmet Bakes Bread, but I must confess I have not used it yet because I got diagnosed as hypoglycemic, and so I've been eating a pretty cavewoman sort of diet, although I do eat small amounts of brown rice or sweet potato or something with my protein and veggies because I think I do need the complex carbs for balance, I just can't tolerate very much. So mostly I stick to meat, fresh veggies, and nuts and nut butters, with limited fruit (about one piece per day). I supposedly have a cow dairy allergy (showed antibodies on three different tests, so I'm taking that very seriously), so that leaves out milk or yoghurt for me too. So I'm pretty much a cave woman. Now I will be an MSG-free cave woman, if I can just stay away from those Auxigro veggies. I have made things from the Paleo Diet book, and from Mercola's cookbook (but he seems to use dairy or soy sauce- eeek!- in everything!). I also like very much the book "Going Against the Grain". She has some nice, simple recipes. I also am very into making jerkey and other snacks in my food dehydrator for hypoglycemic moments and traveling (see, I'm rather used to this lifestyle already, since I've had to be just as paranoid about gluten as I'll have to be about MSG. However, I mistakenly thought that the reason I always felt bad after eating in restaurants is because they were putting gluten in things even though I was eating everything plain, unbreaded, and specifying no gluten. I now have a different idea about that). Thankfully, I was astute enough not to use the jerkey spice mix that came with the dehydrator. At least it just lays it all out there in the ingredients list, though: monosodium glutamate. I just use garlic powder, salt and pepper in my jerkey. You seem to know a lot about how the body works, Carol. Do you have any insight into my original question on the St. John's Wort? Thanks for talking to me! Both of you are so nice to help so many like us. -Krista | ||
| PhyllisCh
|
I have been juicing at home recently. One day I went to the local health food store and ordered fresh celery, carrot, cucumber juice from organic vegetables. When I began drinking it, I started getting headaches and palpitations. I noticed that they didn't clean the vegetables as well as I do at home. After I wash them, I always dry them well. I also cut off the skin on the cucumbers just in case. They quickly rinsed them off and put them on a wooden block which they wiped with a sponge and didn't dry off. I wonder if there was Auxigro on them. Phyllis | ||
| Deb A. |
They may have wiped the wooden block with a sulfite solution, which is still allowed, as long as they don't add it to salad bar foods. You're right though, it could have been that the organic carrots or other produce was treated with AuxiGro, which won't wash off at all. I have had the same reaction to organic carrot juice. | ||
| Krista |
Hi, I just wanted to update everyone on my St. John's wort issue. This might not be of interest to most, but somebody else might come along looking for info. like this, so I will explain what I've found out. I did a lot of reading yesterday, and I now think I know why St. John's wort was helping me. If you take it for depression, it's supposed to take about 6 weeks to start helping, but it helped my sleep and muscle pain almost immediately. I think this is why: St. John's wort prevents re-uptake of many neurotransmitters, including serotonin (and, relevant for us, glutamate). This is, they think, how it helps depression. But it also has another effect, one that is getting lots of attention in the pharmaceutical world because of drug interactions with it. It has a huge effect on the liver's Phase I detoxification pathway, the cytochrome p450 path. It induces part of it (enhances the activity of an enzyme), but it also inhibits part of it, a large part of it. I had a detoxification profile done that my doctor ordered. It showed that my Phase I pathway was WAY upregulated. This is not a good thing. It means that the liver is encountering LOADS of toxins (free glutamate being one, perhaps?) and trying to get rid of them, but my Phase II sulfation and glutathione conjugation pathways were not upregulated to match, which means they are not keeping up, which means that lots of free radicals are being produced by my Phase I pathway, but are not being neutralized and eliminated from my body by my Phase II pathway. No wonder I am sick. So I think the St. John's wort was slowing down my Phase I pathway enough so that my Phase II could catch up, and that is what was making me feel somewhat better on the St. John's wort. But I am not a scientist, and these things are extremely complex, and it took me all day of reading to come to this conclusion, so I could be wrong. Anyone else have any idea about this? I decided not to take the St. John's wort. I think it makes me feel better in the short term, but I'm afraid of the effect it might have in the long term. I think a better approach is to try hard to increase my antioxidant intake to catch my Phase II path up with my Phase I. Can someone review for me what foods have the most antioxidants? I am trying to avoid supplements right now. Thanks, Krista | ||
| Catherine Battams
|
Krista and everyone, I am very interested in st.Johns Wort, for I suffer from severe binge eating. You are right you should be cautious of going on st.johns wort. I went on it for 3 months to get rid of post natal depression, and it worked but I felt as so I was going to die when I came of it, and had a lot of anxiety, worse appetite, ate non stop for 4 hours. I maintained my consciousness by having glutamine one minute and phenylalanine the next. I study neuroscience, human biology, nutrition, and am a OU student, and have an autistic son if any one wants to give me advice on what I should to to control my binge eating or help my son please help by the way, Thanks Cathy | ||
| Catherine
|
Hi Krista, What I wanted to ask before my computer freezes up (fingers crossed). Have you tried fish oil, e.g. EPA in a higher dose to DHA, by a company called health essentials, or something like that. Their are many books on fatty acids, fish oils and their positive effects on treating depression, PUB MED have many journals for you to read, e,g, type pub med on the internet. Have you tried phenylalnine, or tyrosine which suppost to lift adrenal/ nor-epinephrine, dopamine, have you tried 5-HTP. Have you ever tried a anti-candida diet. Is their reasons why your liver maybe down? Have you had a fatty acid analysis, hair mineral analysis to check for heavy metals, e,g, if you eat alot of tuna your bound to be toxic in mercury. | ||
| Catherine |
Krista you sound a very sensitive person be careful about over doing your body with a load of artificial tablets. I read resently that chromium picilinate has known to cause ovarian cancer in rats and cause a higher rate of DNA mutation. Food at first is the best medicine, if you cannot eat wheat do not eat refined non glutan foods, eat plenty of vegetables, salads, and ideally organic meat, e.g. chicken at least, and non organic fish, a tiny bit of friut not oranges. Find a book on candida albicans. Eat whole rice, stay of any sugaer, ideally of milk as an experiment to see how you feel. consider experimenting with only fish oil, I would leave vitamins, minerals tablets, else your liver will be spending top much time detoxifying alien tablets when it needs food. The body does not absorb tablets well or recognise them as well as real food. Do not have aspartame or MSG foods,ideally ever again. stay clear of amino acids until your body has carmed down. You may have other allergies, you sound like you have adrenal fatigue, check amazon.co.uk adrenal syndrome book, Lots of love to any sufferes out their | ||
| Carol H |
Catherine, I take Effexor XR for chronic depression. When I miss a dose - I binge on carbs - probably to send more tryptophan to the brain to make seratonin. That is usually my first clue to my missed dose. I think lowered seratonin is a cause for binge eating. That said, there is research being done on glutamate blockers to treat long-term depression due to the fact that glutamate and aspartate target the NMDA receptors. I like eggs as a good source of tryptophan. There have been recent articles regarding how eggs help dieters by keeping appetite in check. I wonder if the tryptophan content helps prevent those binges? As for your son, I see many articles in Living Without regarding casein-free and gluten-free diet for autistic children. Both casein and gluten are high in glutamate and when processed - high in free glutamate. Recent studies regarding autism show that the part of the brain - called the amygdala is overstimulated. This causes children to perceive faces as threatening - explaining the tendency to avoid the gaze of others. The amygdala is targeted by glutamate in animal studies, and MSG resulted in damage to the amygdala. This is too much of a coincidence - that autism is on the rise and so is the amount of MSG in the diet, and that avoiding high glutamate foods like casein and gluten appears to help autistic children. | ||
| WDen |
Krista, You may not even read this, since your original post was in '05, but here is some information that may be of help to you. For headaches, food intolerances, digestive problems, etc. try a "whole body cleanse", from the health food store. It either cleanses Candida, or heavy metals from the system. You can feel worse for a few days. Then try the "candida diet". | ||
| Anonymous |
Ein Schloss, Ein Wurst, Ein Kopf !vwm | ||
| Molly229 Unregistered guest |
I'm afraid to go off my St. Johns wort after reading this  |
