Dizzysillyak

Ram, I hate to break it to you, but we're years past controversial in the "real" world ... I would think that your wife would be just as happy, if not more, for those healing from autism as those who she's treating. Just to give you one example of how things are changing, here's the latest from Dr. Green, a well respected celiac researcher. The forward wasn't available online or else I just couldn't find it but here is a review from the book the G-Free Diet where Dr. Green states that gluten affects more than the gut. This was already known but he was a hold out on this until this ... http://surefoodsliving.com/2009/04/27/the-...lbeck-a-review/ And perhaps you'd better understand where I'm coming from if you visit the websites I found while trying to heal myself from CFS. This was the first site I found and the mods here taught me about gluten ataxia (Dr. Hadjivassilou - 2002). I was trying to figure out why I all of the sudden didn't need a motorized cart and could walk normally. Imagine a weeble gumby combo ... This site has been recommended by a traditional neurological magazine too for sticking to proven medical research (Pubmed) for backing up what they say. http://brain.hastypastry.net/forums/forumdisplay.php?f=152 This site is a new website set up by the original mods on Braintalk .. http://www.glutenfreeandbeyond.org/ Here are just a few of the journeys of those who've been helped via the gluten free diet, etc ... http://www.glutenfreeandbeyond.org/forum/viewforum.php?f=14 They have a section dedicated to new medical info too ... Then there are the autism websites where you get to see how these parents learning as they struggle with all of this ... and you get to hear about the progress to. : ) ... I ended up on several while trying to fix my petite mals and then my kidney stones. I think it was www.Atkins4seizures.com and I know it's http://health.groups.yahoo.com/group/Trying_Low_Oxalates/ ... Both are moderated by professionals ... The reason I believe all of this isn't just what I've read but what I experienced before I even knew what to call those symptoms I had that were suddenly gone. I didn't start out thinking I'd go on the GFCF + diet and see if I could heal myself from CFS, it just so happened that my narcolepsy, ataxia, myoclonus just disappeared while I was trying to find something I could eat. Similar to what Elisabeth Hasselbeck realized when she was on Survivor. In researching my symptoms, I found out about DAN, Dr. Myhill, Dr. Hadjivassilou, Dr. Green, Dr. Fasano, etc. etc etc. I've read most of the articles by the CFS researchers and Dr. Grubb, etc but they don't seem to be looking for the root cause just the after affects ... which is why I'm not interested in just living with this or info on nitric oxide or H2S or whatever except that it gives us clues in what may be going wrong to cause these conditions to exist in our bodies. FWIW. I've tried to be very careful what I said I believed in. You mentioned the methylation protocal. I'm sure I said that Rich believes this to be the source of CFS. Not I believe this to be the source. I'm more interested in his theory now that Dr. Myhill believes it though. Her info has helped me several times. She helped me figure out that I had chronic hypoglycemia and needed to go on the Paleo diet. She's not one of those that said eat every 2 -3 hours for the rest of your life. She recommends the Sinatra protocal too which my doctor also recommends. I'm just learning about how supplements work since I couldn't digest them until Jan 09, so I can't attest to the benefits of all of them and frankly wouldn't just take these without first studying them and then going very very very slowly ... and I try to stick to those that are pharmaceutical grade, like Metagenics too, so that you know what you're getting. Have you tried any of this ? Are we talking traditional versus functional medicine here ? Many doctors, including mine, have switched to being integrative so that they can better help their patients. Can you elaborate on the research going on in the CFS world ? The CDC is a large US health organization and the funds they are allocating towards CFS has been mishandled in the past. Their latest trend is just another example of how they aren't taking CFS seriously. The current plan is a 5 year plan and I'm not waiting that long for them to be misproven.

http://www.mayoclinic.com/health/tinea-ver...ECTION=symptoms I had to google tinea versicolor ... I get those too and didn't realize it was from fungus. Bummer ...

3 years. That's great ... so you've got it down ... Not sure what's up with your stomach getting distended like that unless it's a food intolerance. The only reason I can think of for it happening in the middle of the nite is that you're reacting to something you're eating or taking before going to bed. I can't handle the sorbitol in sublingual melatonin so I had to switch to a capsule. Have you seen a GI ? I can't remember ... Have you had a GTT (glucose tolerance test) ? I ask because when I had my last one, I went into a deep sleep phase at either the 1 or 2 hour mark. My glucose reading at that point was 189 too. Not good ... but overall, I heard that my test was "normal". I still have to ask my new GP about this ... I mentioned this because you could be reacting to sugars or high glycemic foods this way ... they nail me ... The Paleo diet helps with blood glucose problems but it wasn't enough for me. Did you see that study where they put those people in a zoo and fed them Paleo foods for awhile ? I always think of this when I talk about the Paleo diet .. lol Chromium is needed to help regulate blood glucose too. EFA's help too ... I'm not sure what else. I think part of my problem was my liver wasn't / isn't ? able to keep up. I figured this out when I went on the Modified Atkins diet (extremely low carb) a few years ago and my blood glucose stayed at 67 no matter what or when I ate. I finally caved and ate some fruit. Evidently, my liver couldn't handle the strain of being in ketosis. As of April, 09, I can be extremely low carb and my blood glucose stays up ... : ) progress ... yeah !! I'm having to eat papaya, mango and pineapple right now to keep foods going through me so low glycemic is out ... I'm still recovering from the gastroparesis I got from being glutenned a few weeks ago. I have to look at your mito cocktail and B vitamins again ... I'm currently experimenting with several new supps though so I need to wait a bit. g nite .. Marcia

So does this mean you're eating chocolate anytime you need a "hunk fix" ? My sister's face swells if she eats too much chocolate. The first time this happened when she was in her 20's, she was quite surprised as was her husband. lol ... My GP said it was the tryptophan but I still wonder about it. Sleep is an allergic reaction for me. I do this everytime I eat wheat too. But, I had a funky reaction to 5HTP (tryptophan). I can only describe it as a locked up feeling in my brain. It was late and I'm too big of a chicken to try it again ... Since you have severe allergies, I'd definitely give up any soy, corn, egg and all chemicals for a few weeks then and then add them back in one at a time to see if it makes a difference. I did this so many times with dairy, I'm embarrassed. Most of the time I was trying to get yogurt in my diet for the probiotics, but Breyer's Lactose free ice cream made it into my shopping cart once too. Actually if my GP hadn't just seen my raccoon eyes and told me that I should not be eating dairy, I'd still be playing with it ... BTW. I got a gluten reaction from Breyers ice cream ... How long have you been GF ? I ask because it can take awhile to heal. I've been GF since 9/2005 and according to my EGD back in March 09, I no longer have celiac disease and my test was completely normal. My first biopsy however, done 17 months post GF, showed that I still had damage from either NSAIDS or celiac disease. So, 17 months post GF was too early to look for remission but 3 and 1/2 years out, I was ok ... My digestive tract hurt most of the time for the first year of this diet and slowly got to the point where I wasn't afraid to eat. One thing that celiac specialist or GI who diagnose anyone with celiac disease never talk about is how NSAIDS can damage those villi too. We know that viruses, candida, etc can cause leaky gut (opening in gut lining) but I'm not sure if viruses, candida, etc can flatten villi ... Are any of you dealing with those too ? That would keep you from healing ... Also, have you used L-glutamine, digestive enzymes, probiotics, aloe, etc ? All these help the digestive tract heal. I found that eating EVOO, flax oil, etc made my digestive tract feel better too. My GP told me to avoid anything that hurt my digestive tract and if I was in pain to go back to my "safe" foods. For me that was baked chicken (I was ok with it back then) or fish, applesauce, pears, rice, baked potato, peas and asparagus. Oh and fresh papaya was a life saver for me ... no spices even esp no pepper. I've had some good doctors through all this too. My GI now is great as is my integrative GP ... Still though, I'm on my own here ... My docs are interested in what I'm doing and are helpful, but they aren't as up on all the "CFS" symptoms as I am. Like they didn't know about the extreme gluten sensitivity, chronic hypoglycemia, orthostatic intolerance, etc. I have no one to ask about the neurotransmitters I just started using either ... Marcia

Hi again, GFCFSFEFCF means Gluten, casein, soy, egg and corn free ... I had to elimate all common allergens due to my digestive issues in 2005. Friends at celiac.com told me it sounded like I had full blown celiac at that point. I already told you what an idiot my GI doc was. I wish I could say this wasn't the norm ... I was told by my GP that since these foods are commonly found in processed foods today that many of us are developing intolerances to these. BTW, my dogs vet told me that the same goes for dogs ... my dogs are Grain free due to severe allergies ... I can handle a bit of casein, soy, egg and corn in processed foods without feeling crappy from time to time. But I only eat this if I'm somewhere and there's GF goodies in front of me that I can't resist. I don't keep any processed foods or GF grain mixes in the house ... I know my limitations and it's just too to grab one of these when I'm feeling ravenous ... Allergy testing isn't as helpful as one would hope either. I have antibodies to gluten and egg whites but I've found that despite not having antibodies for casein, I get dark circles around my eyes if I eat it for 3 days. These take 7 - 10 days to go away. I get phlegm in my throat immediately from soy milk. For some reason, chicken and turkey both make me sooooo sleepy that I only eat these before going to bed. There are other common food allergens though which you can find by googling elimination diet. I know I've forgotten something. BUT you can develop food allergies to whatever you eat a lot of. As far as the chemicals go, I stopped eating meats or eggs with hormones, etc. I quit using Teflon pans. I use all natural dishwasher soap, avoid bug spray, etc. Fabreze made my eyes twitch for hours the last time I used it so that's out too. Clorox bleach gives me phlegm in my throat for days ... Keep in mind that I usually feel completely healthy (at rest anyways) until I get ahold of one of these so I can tell what's doing what. I'd only go as far as you need or want to though. I did this because I saw a direct reaction to these items. I eat anything I don't see a reaction to though .. For some reason, maybe GOD is looking out for me, I can still eat chocolate ... Also though, I read info about how cytokines interfere with our bodies ability to function. Cytokines are produced by our exposure to toxins including food intolerances, chemicals, etc ... I have this article somewhere but I can't remember where right now ... This article is why I decided to limit my chemical exposure too. Are you using probiotics and digestive enzymes ? time for a break ... marcia

Whew. I was feeling all alone here. I've got to run but basically I ended up on the Paleo diet since my blood glucose runs too low. Dr. Myhill has info on how most CFS patients have hypoglycemia and can benefit from this diet ... more later .. c ya .. Marcia

Summer, As a fellow parent, I'm sorry to hear this ... I've heard others saying this too and I find this attitude interesting myself. I was born with the cord wrapped about my neck and as a child showed signs of partial seizures, blackouts, ataxia, inability to follow a conversation, lack of eye contact, speech impedements, ate dirt regularly, etc. which was all attritubed to brain damage that occured at my birth. I did well in school too but it was a real struggle. OK, plenty of people make it through public school stoned so, I'm not sure this means anything ... I'm 53, but I would imagine that if I'd been born today, I would've been included in the ASD ... not severe but enough to get me in. Please don't take this the wrong way, but I can't imagine how hurt I'd be if my parents had let me live my life this way, telling me I was wonderful as I was and I found out later that there was more that could be done. I can't be angry with my parents because that was too long ago and doctors told my parents that that was just the way I was. It's different now .. you know about the GFCF diet and DAN .. I know and I have a daughter with life threatening allergies, high ANA, etc who could benefit from going on the GFCF diet too and so I'm doing what I can to get her on it. I did see all that Jenny put her son through, but I'm sure that's not the norm. Who has that kind of money ? The internet is free and full of parents of autistic kids who they are trying to fix. Yes, I know it's not easy and maybe it's best reserved for those children who can't go into a classroom or out in public due to an inability to control their behavoir. It's certainly every parents choice ... I'm just saying as someone who has dramatically improved their life via this diet and am now benefitting from the use of supplements, I'd be hurt ... Seriously, without this diet, I'm probably be dead by now ... I was losing so much blood due to heavy menses and weight due to diarhea and my doctors weren't helping ... I was actually told by two gyns that my loss of blood was a "self limiting" problem. Meaning, I'd die of blood loss ... I think that was a joke with them since they both had that "Do you get it ? " look on their faces ... I was too pissed and too weak to think it was funny ... I have to run errands .. I hope I'm not offending anyone. Granted this is a tough subject for some but it's my intention to shed some light on this not to demean anyone for not trying it ... You have to know that if I'd found this board prior to figuring out how foods affected me, I'd be arguing your point ... I did it for 15 and 1/2 years ...

No actually, that is really just speculating as to a common pathway that results in either autism or CFS which is pretty strange given that we still dont understand why people develop autism or CFS - all the reasons outlined in that study are speculative. There is no uniform and testable causal mechanism that has been proven for either condition so you cant really be that definate. Try telling this to those parents of autistic kids who's children have regained their lives by following the DAN protocal. Jenny McCarthy's son is just one out of thousands. I see these parents posts all the time. The good and the bad. Most respond to the GFCF diet but need other interventions too. Leaky gut explains all of this. There is plenty of research on autism dating back as far as the 1970's. The Autism Research Institute has been saying since then that they had positive results by treating these kids holistically. It's just that the American Pediatric Association doesn't want to hear it. They repeatedly refuse to verify with the DAN community that these methods are helping kids. They have even been invited several times to participate at DAN conferences, but they refuse. This has been documented and can be found on DAN websites or in Jenny's 2nd book. And why is that ? Because there is too much money involved in vaccinations and the other autism treatments ... Same goes for CFS, POTS, MS, etc ... R said ... "There is research going on right now that may have uncovered more likely mechanisms for CFS. Autism on the other hand is a whole different kettle of fish. It is interesting that autistic children experience sensory overstimulation and food intolerances as well as immune system disfunction, but ive never heard of autistic children experiencing NMH or POTS which are very common findings in CFS patients. " That's a joke, right ? Do you know that the CDC is working to make CFS a psychological illness ? Google CDC CFS 5 year plan to see this ... I'll go get the link in a minute, but I haven't had breakfast yet ... Hmm, I'm not sure how you would tell if an autistic child has NMH ... POTS by the description given on this board is the same as CFS so they qualify for that. But if you're strickly talking fatigue, I'm really not sure. It would be hard to know if a child who's stimming, spacing out, throwing trantrums, having seizures, unable to can't speak, constant episodes of extreme constipation or diarhea, etc etc etc is also having NMH or fatigue ... Heck, I didn't realize exactly what it was until I got rid of most of my problems ... and even then my docs weren't any help. I had to research why I was feeling dizzy after standing for more than 20 and then figured out it was my BP ... and I had to ask specifically to be tested for this ... What I am saying is that when there are so many other disturbing symptoms these may not be recognized ... R said ... "Ofcourse, if you search the web long enough you can find research that demonstrates any contention you like - elevated nitric oxide, increased oxidisive stress (which in many ways is paradoxical with increased nitric oxide), disordered methylation cycles, etc. But none of this is proven science - it is one step ahead of guesswork. That is the difference between much of the research available on CFS to date and that which is available on POTS where there are measurable mechanisms that can easily allow for diagnosis of the condition, etc." I don't believe everything I read and neither should anyone else. I guess we know that since I don't believe that CFS, autism, POTS, etc are incurable. I do trust those who are trying to help us heal though. The others, in some cases but not all, have their own agenda ... I'm not sure how many docs are aware of how gluten, etc affect our bodies, but I am running into more and more people who are being told to stop eating it for a variety of reasons. And many traditional doctors are becoming integrative doctors so they can better help their patients ... Because of the internet and specifically google, we now have access to health information that was never made available before to us or the medical community. Many of us are using it to heal themselves ... just take a look at how many members there are on celiac.com ... most weren't properly diagnosed and had to figure this out for themselves ... that's what go me started on this path ... FYI. Don't stay there though. They are deleting threads about those GF foods that are cross contaminated. Business is business ... waterbaby, Sorry to hijack your thread ... marcia

Sorry to hear this ... Do you have any raw garlic in the house ? This is great for infections in case that's what you have going on. The recommended dose is to start out slowly and increase as you tolerate it. Say a small bite at first ... I have a freind who pops a whole clove in her mouth when she feels a sore throat coming on but she's been doing this for years now. Gargling with warm salt water helps this too. Do you salt load ? My oral symptoms have been reduced since I started drinking salt water. If it's an allergic reaction to something, you need to figure out if it's something you're eating or a toxin in your environment. Soy milk and going into a moldy building do this to me ... It could be anything but if you start with the common allergens it will save you time. These are wheat, dairy, soy, corn, eggs, peanuts, etc ... HTH .. Marcia

waterbaby and others, I'm having a great day today. No OI at all and tons of energy. KOW .. I even worked in the yard for a couple of hours ... I think it's what I took for sleep last nite since I woke up feeling terrific. I've been working on what combo of neurotransmitters I'm lacking ... I just started researching these and found theanine and melatonin recommended for anyone with myoclonus (jerking). I'm still learning about all this though ... Last nite I took 6 mg melatonin (capsule not sublingual), 400 mg L-theanine and a supplement called True Calm by NOW. http://www.herbalremedies.com/trucalamacre.html I've been playing with lower dosages for several weeks and this has been the best combo yet ... however, I don't recommend anyone trying these supplements or this quantity or combo without testing a small dosage first. A freind of mine with CFS uses 5HTP so I tried it and had a bad reaction ... so everyone is different. Are you all familiar with these ? thanks ... Marcia

I wrote this thead back in 2007 and am too lazy to recreate it here ... This shows how CFS and autism are related ... http://brain.hastypastry.net/forums/showthread.php?t=22098 I didn't know about orthostatic intolerance (OI) at that point so I had no idea what POTS was. I only found this website and started learing about POTS, etc when my GP re diagnosed me with orthostatic intolerance via the poor man's tilt table test. I've had OI since 1990 but with all my other symptoms this one didn't matter to me ... .. As far as I can tell now, OI and PEM (post exertional malaise) are my last 2 CFS symptoms to eliminate. KOW ... So here's the info on POTS ... http://www.dinet.org/symptoms.htm Notice the commonality in symptoms ... Honestly, I think if I'd seen one of your doctors instead of mine, I'd have been diagnosed with POTS ... Hopefully someone here will know what alternative tests (nutritional, heavy metals, oxidative stress, etc) have been done on POTS patients ... HTH ... Marcia

I think in terms of general doctoring you are probably right - particularly in the past - in that because they couldnt explain what was going on, they couldnt really do much. What this general leads to is patients having to take their condition and its treatment into their own hands. Sometimes this works out, other times it can cause more problems than it solves. POTS is becoming fairly well understood and the amount of research going on right now and in the last few years suggests that they are making up for lost time. I think we will have most of the answers in the next few years, so medicine is trying its hardest. Please don't get me wrong. I like my traditional doctors, I just accept their limitations now. If I need surgery, or a procedure or medication (a last resort) or a lab run, I'll go see one of them. But if not, I'll self treat in a safe, cautious way of course. The problem is that I didn't realize this all those years I was too sick to stand up most of the time. I can't help but be angry. I thought I had this licked but the better I feel the more I realize how wrong all this is. I've lost 19 and 1/2 years so far and my daughter (age 2 when I got sick) lost out on having an AWAKE mother. She's rascally and needed someone 24/7 ... The problem is that traditional medicine is studying the "end results" only and trying to fix that. It just doesn't make any sense to me ... We know that if we put bad gas in our cars, they won't run right and will have all kinds of symptoms. Now an enterprising mechanic would fix this or that and eventually sell you a whole new engine. He's not going to tell you it was bad gas. Same goes for our bodies. We can't put all kinds of garbage in our bodies via the digestive tract and expect to run well. Our digestive tracts are responsible for providing nutrients to the whole body ... it's what keeps us alive. We've forgotten that .. Let thy medicine be thy food. Hippocrates said this ... so this info isn't new, just forgotten. Marcia

I didn't realize the similarities until I started healing from all of this. When I came down with CFS in 1990, I was healthy one day and sick as a dog the next so I didn't know what hit me. I started this dietary / holistic intervention on the advice of my GP in July 2005 because I was in pain all of the time from gas, constipation, GERD, gastroparesis, diverticuli, hemeroids, etc. And then in June 2005, I lost 10 lbs in one month due to diarhea. I saw a GI from 2004-5 but he didn't even test me for celiac disease during the EGD. What an idiot ! As my "CFS" symptoms began to fade and I could think once again, I began to research the symptoms that had simply disappeared and the ones I still had. I just love google now ... At this point, I can't begin to express how stupid it is for the medical community to group all of these symptoms together, give us a grim diagnosis, tell us to live with it and forget about trying to fix the patient. For example, within days of giving up gluten I no longer had narcolepsy. Only I didn't know it was called narcolepsy. I just knew I would fall asleep all of the sudden and would be this way for days on end. And I just thought I had a balance problem and heavy legs, I never realized it was called ataxia ... stupid doctors ... and I failed the Rhomberg too. And that's just the beginning ... The DAN info has been invaluable. Have you heard of Rich Von "something" ? He has been saying for years now that CFS and autism are linked. For those who aren't up on this, CFS and POTS appear to be the same thing ... FYI ... From what I've seen on the web though, many illnesses are related to diet, especially gluten, including MS, etc. Rich has a popular theory called the Glutathione Depletion - Methylation cycle block that he is convinced is the key to getting over CFS. It's something about the detox system .. I can't understand yet so I can't say whether he's right or not but I have seen where Dr. Myhill now agrees with him. From my personal experience, she's been right all along too. If you google his theory though you'll find this. I understand it's derived from Amy Yasko's work. Over the last 4 years, I've run into parents of autistic kids on the various message boards. What an amazing group of parents ... and you can't beat the detailed info those DAN doctors have provided all of us. Have you read "Healing the 4 A's " by Kenneth Boch ? I really enjoyed Jenny's books. She did a great job of making this terrible subject light hearted. I can relate so closely with so many of the symptoms of autistic kids, it's been a little scarey. Those poor kids ... I felt horrible 24/7 before changing my diet ... the brain zaps and the constant buzzing were unnerving. And the digestive problems ... wow ... I attribute the lack of eye contact in my life and those with autism as the inability to follow a conversation without getting overwhelmed. I still can't follow the train of thought. Funny thing is that most people have no idea that I'm not getting what they are saying. Just goes to show how well some people really listen to what the other person is saying. Thanks .. I have some reading to do too. I checked it out quickly and found it's being used by the autism community so it looks good. The shots sound horrible. I had to take magnesium for awhile too and those hurt ... BTW. Tons of fresh papaya and a limited diet help me with my gastoparesis everytime. Nothing else has ever done this for me. I'll try the Mito cocktail now though ... Geesh ... it's late ... good talking with you ... Marcia

waterbaby and others ... Here's why I mentioned oxalates earlier. This is by Susan Owens a well respected researcher in the autism world. She hosts this oxalate site. In here she has some fascinating info on how mitochondria are damaged and how this affects our mtDNA. http://health.groups.yahoo.com/group/Tryin...s/message/23143

Back again .. I wanted to ask you what B1 you take ? and why the two different types ? Oops, make that 3 types of B1 ... I can't take a B complex without getting a UTI so I'm trying to learn about the B vitamins so that I can take them separately. I've been on B12 several times but never noticed a difference but I continue to take it anyways. And I started taking P-5-P this week. This is a lot to learn, huh ? waterbaby said ...

Here are those links ... Dr. Perlmutter (nuerologist) explains here how our bodies use fats to create prostaglandins. He says that these are responsible for calming and/or upregulating our immune systems. Prostaglandins 1 and 3, created from omega 3 and 6, calm the immune system while prostaglandin 2 created from saturated fats activate our immune system. http://books.google.com/books?id=uWIuXSHDg...num=9#PPA556,M1 This article states that EFAs help our bodies process glucose. This article is on diabetes but I'm sure you all know by now that you don't have to have diabetes to benefit from watching your blood glucose levels. http://www.brighthub.com/health/diet-nutri...cles/21562.aspx This article recommends taking 12 grams of fish oil daily for Raynauds (I have this too). http://www.umm.edu/altmed/articles/eicosap...acid-000301.htm

Hi again, Oh, I see now that you said you didn't eat millet, spelt or amaranth. Duh ... It took me between 2 weeks and a month before the cold feeling in my hands and feet stopped. I read that it takes quite a bit of EFAs to make a difference in those with neuro problems. I saw recommendations as high as 12,000 mg a day for Raynaud's. I'll look for that info in a minute but I found this info while googling the RDA for DHA and EPA ... and Perlmutter. He's a well respected neurologist who's up on all of this .. . Here's the fish oil I'm taking. http://www.metagenics.com/products/detail.asp?pid=258 I'm taking 2 of these + 1 Carlson's Cod Liver Oil (1000mg) + 1 Enzymatic E (400 mg) + 1000 mg of Royal Brittany Evening primrose oil twice a day. I checked and was told that these are gluten free. I tried cutting back 2 days ago, but I can tell a difference already. That's intersting that rice works for you. I haven't tried it ... I just don't feel well when I eat grains right now. Nutritional panels look for your nutritional deficiencies. Most celiacs have these. My doc used Spectracell. They have a website. I'm on the Paleo diet so I was actually good on most of them, except for chromium and E. Spectracell also tests for cholestral, insulin resistance, our bodies ability to detox, etc. My detox and insulin panels were off ... An integrative or functional doctor can order these for you. That ***** that you had to treat parasites but great that you don't have a candida problem ... I was parasite free, but have a problem with candida. I continue to struggle with the diet for this. I was doing well then I had company for 3 weeks and she wasn't on the candida diet ... so I cheated ... Have you looked at oxalates yet ? I got my first kidney stone in 2007 from eating too many nuts, raw spinach, etc and learned about this. I didn't even realize that I had vulvodynia until going on the low oxalate diet got rid of it ... I just thought it was menopause pain or vaginitis ... duh ...

Thanks ... this is interesting. We have a lot of symptoms in common and I'm gluten, etc free too. I noticed that you're eating spelt and spelt has gluten in it. http://celiacdisease.about.com/od/faqs/f/Spelt.htm Millet is a problem for many celiacs because it contains gliadin. I can't remember the science behind this exactly. It's been years since I researched this. Actually, a large percentage of celiacs / gluten intolerant people don't do well with any grains. Me included. I've found that the Paleo diet / low glycemic makes me feel best. Sticking to it is a problem though ... but I'm working on it. Also, I started taking EFAs (essential fatty acids) like fish oil (Metagenics brand), Cod liver oil (Carlson's) and E a few weeks ago and my cold hands and feet appear to be gone. Dr. Perlmutter has some interesting info on how EFAs affect our neurological systems. You have to get a good brand of these to avoid dioxins. I have some info on this site about this, but I'll have to find it again ... EFAs are necessary for our bodies to utilize insulin and glucose properly too. I started Evening primrose oil about 2 weeks ago, but can't say that it's had any additional beneficial affects. It's just another EFA ... I've found out recently that if I accidently eat gluten, many of my symptoms re-appear. This time I had myoclonus, insomnia, visual problems, migraines, gastroparesis, constipation, fatigue, etc. I say this just in case you're taking chances with those "GF" processed foods. These get me everytime. I keep trying to remember to get some l-carnitine. I wonder if the Mayo cocktail is really Dr. Sinatra's ? I didn't see CoQ10 in your list though ... Like you, I'm working on healing my body instead of using meds. I don't do well with any meds anyway so there's really not much choice. Have you had stool testing for parasites, bacteria and candida ? Or the nutritional panel ? I almost forgot ... I still wake up in the middle of the night unless I eat some meat a few hours prior to going to sleep. Not sure why this works, but it does ...

I experience this too. I'm diagnosed with CFS/FM/celiac/OI/Raynaud's/ataxia ... etc etc etc ... I've always felt better if I keep some level of activity in my routine even if it's getting up and putting a load of laundry in the washer. I've been this way as long as I can remember too. When I worked at a desk job before coming down with CFS in 1990, I'd have to get up every hour or so to clear my head. I was very athletic prior to becoming ill too. Mostly racketball and aerobics though ... It's tough for me to balance this though since I get PEM (post exertional malaise) from overdoing it and wind up crashed on the sofa for 1 - 3 days. And I just mean running errands for a few hours a day. My guess is that our detox systems aren't working properly. There are actually several theories about this, including the Glutathione Depletion - methylation cycle block but I'm not educated enough to understand these. It's actually very complicated ... This is what is believed to be what is behind CFS and based on my personal experience seems to be right on. So many of you complain of the same symptoms I have / had in some cases, that it only makes sense to me for you to look at the CFS research too. Marcia

It's just crazy what doctors don't bother to look at. Mine was extremely low in 2005 from heavy periods and my gyno acted like I'd done something wrong. Turned out that I was a celiac at that point in my life too and my B12 was low too. No telling what else was off since no one ran any other nutrient tests until last year. Traditional doctors are just clueless when anything other than meds or surgery is involved ... Ok, I'm done ranting for now ... I couldn't digest supplements so I got mine back into range by eating rare buffalo steaks and other foods that were cooked in a cast iron pan. I did the IV once but my doc decided it was too risky to continue with. I don't know how he came to that conclusion since I didn't have a bad reaction ... I still have orthostatic intolerance but I feel a lot better than I did when I was low on iron, etc and eating gluten. FWIW At this point, fish oil, CLO, EPO and E seem to be helping me with my OI ...

Article on how smoking curbs mast cell activation ... So the next time I get around dust, I'll just smoke a few cigarrettes ... http://www.allergizer.com/

How were you diagnosed ? I ask because I was diagnosed with a MVP at the Mayo Clinic just by a doctor using his stethoscope but when I had a complete cardiac workup they found that I have a left bundle branch block. I was told that this is a common misdiagnosis. I was wondering how this relates to our dysautonomia too. Obviously our hearts can't be functioning normally, but is it enough to cause this ? I'm sure in some cases but how do we know. Come to think of it, how many of you get winded easily upon exertion but not all the time ? I was thinking that this indicates a cardio problem and not deconditioning. Somedays, I can go for hours and not get winded but other days, I start the day getting winded easily.

I thought you all might be interested in this. I started taking fish oil and E 2 times a day last week and I think it's already helping my constant dehydration. I stopped salt loading and my hands aren't all wrinkled ... this is my way of knowing if I'm dehydrated .. http://www.brighthub.com/health/diet-nutri...cles/21562.aspx Interesting that we have to watch D too though ... My D was fine when it was tested last but I live in Fl and get out in the sun regularly.

Gary, I don't know much about this other than it was listed as one of my diagnosises at one point. I was given Diamox for the pain and it seemed to help. The base of my skull hurt so bad for almost 17 years that I couldn't lay on my back but I haven't had this is a few years now. KOW ... Sorry, I'm not very helpful ... http://www.mayoclinic.com/health/encephalitis/DS00226 Btw, I noticed that you're going through Lyme treatments. I'm sure there will be die off from that and some funky changes for you. After I removed gluten from my diet, a major toxin for me, over the next 2 years at least, my body acted weird for a few days / weeks and then it would stop ... I had tingling in my forearms, that tingly feeling in my brain like it fallen asleep, funky tastes in my mouth, etc. At any rate, IMHO, if you're on the right track and Lyme is behind your illness, consider that some of your symptoms are just your body healing itself ... be sure to see your doc if it's too weird though. No need to take chances ... Also, My BP went up too high for a long time after I started salt loading and I wasn't even using as much as I am now. I was told to think of the healing process as a pendulum. It's going to swing back and forth until it gets it right ... probably the same applies when trying new meds and that's why they tell us to stay on a med for 3 weeks to see how we do ...

I wasn't diagnosed with it until I was 34, but I've had problems off and on my whole life. There were times when I was extremely clumsy and times when I could ride carnival rides non stop without getting dizzy ... honestly, I think I was born with a gluten intolerance and it just affected me differently thoughout my lifetime.