JoyBop Posted February 2, 2014 Report Share Posted February 2, 2014 Interesting connection. Only ibuprofen is known to increase impermeability in the fit so in essence its counter productive. It's not the inflammation in and of itself that causes pandas symptoms, it's the breaking down of the blood brain barrier. Dr Bock sort of brings it all home with his connection. The most interesting part is my child had a severe case of leaky gut for 4 years but never had a psychiatric or other symptoms. He also did have yeast overgrowth in his stool and intestinal biopsies. Which reminds me, maybe they will find that when we get scoped in a few weeks. Link to comment Share on other sites More sharing options...
SSS Posted February 2, 2014 Report Share Posted February 2, 2014 I don't know if I agree about the inflammation itself not causing 'issues' and food proteins (gluten, casein) leaking into the blood stream causing opioid effect. I absolutely concede I'm looking through our experience, and other boards I spent a lot of time on (Yahoo GF/CF kids) Yeast was horrific here, way, way before my dd ever had an antibiotic. Only ate carbs, begged and begged, any fruit by the truckloads, etc. Only ate meat and veggies when I took gluten and casein away. She was a C-section baby, and my own gut flora has been a wreck for years, with me in denial, and now I have my own rather severe gastro issues. So, maybe this will help someone out there, it's not a lot of fun to deal with for me at this point. Thankfully, my dd is much better. Wishing you and your son the best- S Link to comment Share on other sites More sharing options...
cara615 Posted February 2, 2014 Report Share Posted February 2, 2014 Before I know that ds had PANDAS we were treating him for TS/OCD/ADHD/anxiety through an integrated MD. She told us to remove gluten/dairy/corn and sugar. It took us 3 months to do it but it reduced his symptoms by 95%. In fact, when we finally went dairy free I saw a huge difference over night. These benefits lasted until ds got another strep infection and then the dx of PANDAS. I do believe that removing them helped to alleviate his toxic burden and inflammation going on in his gut. I hope to keep him on this diet for a couple of years to get maximum healing. His eczema went away too Link to comment Share on other sites More sharing options...
rowingmom Posted February 2, 2014 Report Share Posted February 2, 2014 So how do you treat leaky gut? Here is number 1/7 videos produced by Loren Cordain (Paleo Diet) describing the connection between diet and the autoimmune disease MS. He talks about leaky gut, lectins, adjuvants and inflammation in this series: http://www.youtube.com/watch?v=_3RvWGx0AJE 3bmom 1 Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted February 3, 2014 Report Share Posted February 3, 2014 Sorry to be dense, but one thing i have never understood about GF diet -- they say on a GF diet, you can't even have a little gluten -- that a little bit is as harmful as lot. Why is that? I seriously don't understand (and i ask not in an argumentative way, just trying to understand).If I'm on a diet to loose weight and i cut out bagels and breads and pizza, but then have a slice of pizza at a party three weeks in, i have still benefited from eliminating all that bread.If we are removing gluten from a kid's diet because we believe its an inflammatory, is the problem that one random cracker is going hurt him in the same way as a daily diet of gluten? Link to comment Share on other sites More sharing options...
PowPow Posted February 3, 2014 Report Share Posted February 3, 2014 Interesting connection. Only ibuprofen is known to increase impermeability in the fit so in essence its counter productive. It's not the inflammation in and of itself that causes pandas symptoms, it's the breaking down of the blood brain barrier. Dr Bock sort of brings it all home with his connection. The most interesting part is my child had a severe case of leaky gut for 4 years but never had a psychiatric or other symptoms. He also did have yeast overgrowth in his stool and intestinal biopsies. Which reminds me, maybe they will find that when we get scoped in a few weeks. Did you mean impermeability in the gut? Link to comment Share on other sites More sharing options...
pr40 Posted February 3, 2014 Report Share Posted February 3, 2014 Sorry to be dense, but one thing i have never understood about GF diet -- they say on a GF diet, you can't even have a little gluten -- that a little bit is as harmful as lot. Why is that? I seriously don't understand (and i ask not in an argumentative way, just trying to understand). If I'm on a diet to loose weight and i cut out bagels and breads and pizza, but then have a slice of pizza at a party three weeks in, i have still benefited from eliminating all that bread. If we are removing gluten from a kid's diet because we believe its an inflammatory, is the problem that one random cracker is going hurt him in the same way as a daily diet of gluten? the idea is that gluten provokes an immune reaction and immune reaction hurts you. so, even small ammount of gluten is enought to cause a storm. the same idea is behind dairy. there is something about large protein molecules that some tricks immune systems into overreacting. Link to comment Share on other sites More sharing options...
smartyjones Posted February 3, 2014 Report Share Posted February 3, 2014 (edited) if you truly have Celiac Disease, as a genetic condition, due to the mutation, gluten destroys the cilia in the gut -- maybe not actually cilia, may be called villi --at any rate, the small protrusions that exist on the gut wall to help it to properly function. over time, small disturbances add up until you have no or very little of these protrusions in the gut that make it work properly. I believe initially, the villi lay down and do not work to filter and then wither and die. and yes, if you have true Celiac Disease, one bite of pasta or one cracker can cause this reaction. the questions come in when you do not have true Celiac, but have a sensitivity to gluten. some say you would not have this same reaction. others say you may, but it is just not a hard, fast, always gonna occur and be extreme situation. one of the leading researchers used to be with Univ of MD - but I see now has interestingly transferred to Mass Gen. http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1723 -- Alessio Fasano. I found it helpful in the past to understand Celiac was helpful to understand gluten issues. when my son first became ill, we saw a naturopathic doc who did an IGG food sensitivity test. he was off the chart reactive to over 15 foods -- all gluten, dairy, eggs - a few others. we immediately went cold turkey. he ate a GF/DF diet for about 2 years. we then slowly added foods. he now eats a typical 9 year old diet. I have mixed feelings about it -- it is easier, he does not have restrictions when we are at a party or restaurant, school parties are fine -- but, he ate much healthier the other way. unfortunately, since nothing exists in a vacuum, we were desperately seeking solutions so he began this diet around the same time he got on his 2nd abx, Keflex, and had a 100% remission. it was so quick, I knew it was the abx and not the diet. he continued to have exacerbations and better times even while eating the strict diet. I kept him on it because I thought it would be beneficial to lighten his 'toxic' load. this was 5 years ago and even where gluten free has come in that time is amazing. the first month, my kids ate A LOT of rice chex as we were trying to figure it out. once you get into it, it is not that difficult, it's just that it is so different from the way 95% of people eat. everyone told me that it would be amazing how much new and different things my picky eaters would be eating in a few months. that never happened. they still do not eat fruit and veggies and never began -- even after 2 years GF/DF. the idea that they will not starve did not hold true for us. I guess if they were really going to starve, it would - but they would just wait until the next meat or rice/potatoes -- if it was the next meal or the next day. I did not buy a lot of GF products -- mainly because they are expensive and if they couldn't eat a strawberry or a grape, I was not going to buy them a $6 bagel! he did eat more meat than I would have liked -- but he had to eat something! I did have some good baked goods recipes -- we found they are best right hot out of the oven. I even had a chocolate chip cookie recipe that people didn't even know was GF. as I said, as he got healthier, we slowly added things -- like one thing one day. he had no reactions. after a year or so of regulating how much a day, during our move, we threw off the restrictions. I don't believe it made a difference with any symptoms. my final take is that it is highly personalized and I fully believe there are people who see strong reactions - but it may not be the golden ticket for others. I do think GF/DF is a healthier diet for anyone -- seriously, fruit, veggies, meat, rice. I think a lot of the substitutes are problematic because they are highly processed. I think for my ds, his system was in such a state of disarray, it was likely helpful for him to have as little assaults as possible. I think if you are going to do it -- it is easier to go cold turkey and just eliminate it rather than just trying to slowly cut down. I do think there are people who can benefit from a reduction in gluten and others that need to have 100% elimination. I'd say it's best to do 100% and then add a small amount and see what happens. the trouble is, it's not always an immediate reaction you'd see. so, you could have a symptoms some time after that was due to the gluten, but not know to attribute it to that. Edited February 3, 2014 by smartyjones Link to comment Share on other sites More sharing options...
JoyBop Posted February 3, 2014 Report Share Posted February 3, 2014 Pow wow. Yes, I meant impermeability if the gut. Sorry, I really so need cheater glasses, I've been living in denial and auto correct doesn't help! As far as removing gluten, I might add, no diet is perfect and even the best thought out diet will have an occasional oops wether it be cross contaminated foods. Foods mid marked in the I packaging, or just a general cheat. No one can be perfect all the time. As smarty mentioned, if you truly have celiac or a severe allergy to gluten or the product you ate, you may suffer a severe reaction and there will be a recovery time. But you are correct in saying that all that time you succeeded at being gluten free and you were symptom free during that time, of course, nothing can take that away. If you are looking at gluten as an inflammatory effect and you are exposing your child to gluten Occasionally and deliberately, I would equate that to letting your child knowingly hang out with someone who has a confirmed case if strep. In other words, if you believe either of those situations would cause a flare for your kid, or perpetuate symptoms, and you allow continual )even though they may be minimal) exposure you will keep your child in a chronic state if suffering. One step forward, two steps back. It can also take a longtime to get these things out if your system. So while it may only take a day to get the "carbs" our of your body from a diet standpoint, the inflammation or symptomatic reaction could create a chain reaction and or take some time to reverse. These are my own opinions based on my experiences with a child who had life threatening allergies to milk and other things for the first 5 years of his life. The more exposures he had, the sicker he became, the longer the illness lasted. It was so bad that a cross contamination landed him In the hospital for 10 days with bleeding, inflated and paralysed intestines. Each exposure made him worse. We I my for him better when we were able to go a full year without an oops. It wasn't easy, because life happens! Link to comment Share on other sites More sharing options...
3bmom Posted April 14, 2014 Report Share Posted April 14, 2014 One thing that was not mentioned is you don't have to be allergic to gluten to have inflammation issues. I would recommend the book "Grain Brain". Wheat, Rice, Corn are all heavily sprayed with pesticides at the end of the growing season to prevent molds etc. This is in addition to pesticides in the beginning for weeds. These pesticides with no limits for safety remain in their young bodies reeking havoc and causing the immune system to be perpetually turned on, later leading to an auto-immune dysfunctional state. Link to comment Share on other sites More sharing options...
Rachel Posted April 15, 2014 Author Report Share Posted April 15, 2014 I am beginning to figure this out. I got back my son's 23 and Me test results yesterday. He has some CBS genes that are +/-. I have learned that high sulfates and ammonia could contribute to inflammation problems. His gene for Celiac is negative. A high protein diet can contribute to high sulfates and ammonia levels. This next week, I will be going dairy free with my son to see if this will help lower some of the sulfate levels. Link to comment Share on other sites More sharing options...
Rachel Posted June 2, 2014 Author Report Share Posted June 2, 2014 (edited) I started a gluten free diet with my son on May 30th. So far so good. My son had his second IVIG treatment that week also. I am not seeing any improvements yet with IVIG but our doctor did not think we would see any improvements until maybe after the 4th treatment. My son does have a new diagnosis. On the hospital orders it stated Antineuro-Autoimmune Antibodies of the Autonomic Nervous System with POTS Secondary. What a tongue twister of a name! Edit: My son is currently involved in 2 studies because of his medical condition. I wanted to share the research the that Dr. Cunningham was been doing with the POTS research doctor Dr. Kem at OU. http://jaha.ahajournals.org/content/3/1/e000755.full?sid=2a92ae76-d6fc-491c-9e79-43190d584090 Edited June 2, 2014 by rachel Link to comment Share on other sites More sharing options...
qannie47 Posted June 4, 2014 Report Share Posted June 4, 2014 Rachel, I finally started down the road to a Gf/CF diet! I feel it is imperative for my non Pandas child. I have decided to go slow, and hopefully by 4 weeks I will have mastered much of what is needed to know. I am excited that I have found Gluten Free oat flour. I so far have made excellent pancakes, chocolate chip cookies, breaded fish/chicken, and orange scones. They are almost identical to the real thing, I cant believe it!!! I have decided to make the whole house abide by the diet. So far I have managed 3 days of no gluten/dairy and I am shocked at how much better I even feel. I am sure it will take much longer to see noticeable results in my son, but I am hopeful. Link to comment Share on other sites More sharing options...
rowingmom Posted June 4, 2014 Report Share Posted June 4, 2014 (edited) One thing that was not mentioned is you don't have to be allergic to gluten to have inflammation issues. I would recommend the book "Grain Brain". Wheat, Rice, Corn are all heavily sprayed with pesticides at the end of the growing season to prevent molds etc. This is in addition to pesticides in the beginning for weeds. These pesticides with no limits for safety remain in their young bodies reeking havoc and causing the immune system to be perpetually turned on, later leading to an auto-immune dysfunctional state. I don't think gluten free is good enough - what we really need is to be glyphosate free. http://www.drlaurendeville.com/articles/genetically-modified-foods-gm-gmo-care/ Despite the official consensus that GM foods are safe for consumption, though, there is cause for caution. For the most part, GM foods contain a gene from an organism called Bacillus thuringiensis, or Bt, which, when expressed, produces a toxin called glyphosate. This is the active ingredient in the insecticide called Roundup, which kills insects by poking holes in the gut lining. According to the EPA, glyphosate is toxic to insects only and has no effect on humans or animals. However, some data links glyphosate with birth defects, miscarriages, infertility, behavioral disorders, and even autism. Even more compelling to me as a naturopathic doctor is the fact that since the 1996 introduction of GM corn and soy into the US, inflammatory gastrointestinal disorders have been on the rise. Admittedly this is only a correlation, and may not be causative. However, I can verify in my practice that intestinal permeability, or so-called “leaky gut” syndrome, is strangely prevalent. (I make this diagnosis when according to blood food sensitivity tests, patients develop IgG reactions to more than twenty different foods.) I can also verify the connection between the gut and overall health. More cause for concern: glyphosate is a chelator, which means it binds to positively charged elements and compounds (such as trace minerals and nutrients) and doesn’t let go. Plants treated with glyphosate may therefore be deficient nutrients, and the evidence suggests they are primarily low in manganese, zinc, and iron. Although there are studies on both sides of the fence on this issue, it stands to reason that if true, animals eating nutrient deficient plants will then develop nutrient deficiencies themselves. At any rate, it is certainly the case that free-range poultry and grass fed meat are substantially higher in essential fatty acids (EFAs) than their agro industry counterparts, and I wonder now whether these issues are related. http://articles.mercola.com/sites/articles/archive/2013/06/09/monsanto-roundup-herbicide.aspx While Monsanto insists that Roundup is as safe to humans as aspirin, Seneff and Samsel’s research tells a different story altogether. Their report, published in the journal Entropy, argues that glyphosate residues, found in most commonly consumed foods in the Western diet courtesy of GE sugar, corn, soy and wheat, “enhance the damaging effects of other food-borne chemical residues and toxins in the environment to disrupt normal body functions and induce disease.” Interestingly, your gut bacteria are a key component of glyphosate’s mechanism of harm. Monsanto has steadfastly claimed that Roundup is harmless to animals and humans because the mechanism of action it uses (which allows it to kill weeds), called the shikimate pathway, is absent in all animals. However, the shikimate pathway IS present in bacteria, and that’s the key to understanding how it causes such widespread systemic harm in both humans and animals. The bacteria in your body outnumber your cells by 10 to 1. For every cell in your body, you have 10 microbes of various kinds, and all of them have the shikimate pathway, so they will all respond to the presence of glyphosate! Glyphosate causes extreme disruption of the microbe’s function and lifecycle. What’s worse, glyphosate preferentially affects beneficial bacteria, allowing pathogens to overgrow and take over. At that point, your body also has to contend with the toxins produced by the pathogens. Once the chronic inflammation sets in, you’re well on your way toward chronic and potentially debilitating disease. In the interview above, Dr. Seneff reviews a variety of chronic diseases, explaining how glyphosate contributes to each condition. So to learn more, I urge you to listen to it in its entirety. It’s quite eye-opening. The research reveals that glyphosate inhibits cytochrome P450 (CYP) enzymes, a large and diverse group of enzymes that catalyze the oxidation of organic substances. This, the authors state, is “an overlooked component of its toxicity to mammals.” One of the functions of CYP enzymes is to detoxify xenobiotics—chemical compounds found in a living organism that are not normally produced or consumed by the organism in question. By limiting the ability of these enzymes to detoxify foreign chemical compounds, glyphosate enhances the damaging effects of chemicals and environmental toxins you may be exposed to. Be careful of the grains you use to replace wheat in your cooking. If they are heavily sprayed with glyphosate they may be producing as much gut damage as gluten. Rice, especially brown rice sourced anywhere other than California can be high in arsenic because of the arsenic pesticides once used on cotton (for boll weevil infestation). These areas are now used to grow rice. Rice has a natural affinity for arsenic and will pick it up where ever it is plentiful in the environment. Arsenic is concentrated in the outer husk. Edited June 4, 2014 by rowingmom Link to comment Share on other sites More sharing options...
Rachel Posted June 5, 2014 Author Report Share Posted June 5, 2014 King Arthur Flour website has some really good recipes. The blueberry muffins and pancakes have been a big hit. I have not taken the whole family gluten free but I have been doing it with my son. We have been on it for 6 days and I can tell a difference in my energy levels. I cannot see any difference in my son and my son does not feel any differences yet. However, our cardiologist said to stay on it for a least 3 months. He knows it will take a load off his immune system. Our evening meal is gluten free and the whole family has it. No complants yet. We had chicken nuggets and oven fries last night. Link to comment Share on other sites More sharing options...
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