Rachel Posted January 30, 2014 Report Share Posted January 30, 2014 I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel Link to comment Share on other sites More sharing options...
rowingmom Posted January 30, 2014 Report Share Posted January 30, 2014 (edited) Gluten, among other things (yeast overgrowth/gut dysbiosis, pesticides and GMOs which kill healthy gut bacteria), can alter the function of bacterial symbionts, the mucosal barrier and the tight junctions of the gut leading to inflammation throughoutt the body (and in the brain as well), even if allergic reactions are not involved: A De Santis, G Addolorato, A Romito, S Caputo, A Giordano, G Gambassi, C Taranto, R Manna, G Gasbarrini. Schizophrenic symptoms and SPECT abnormalities in a coeliac patient: regression after a gluten-free diet. J Intern Med. 1997 Nov ;242(5):421-3. PMID: 9408073 A gluten free diet is just one aspect of an overall anti-inflammatory dietary approach which allows gut healing. Edited February 2, 2014 by rowingmom Link to comment Share on other sites More sharing options...
pr40 Posted January 30, 2014 Report Share Posted January 30, 2014 i doubt very much that you can identify precisely what the benefits of gluten free are, unless you are celiac but even then. So, I want to second rowingmom, diet is an aspect of a comprehensive treatment. I do want to add this, you don't have to be gf and df forever. Give it a year or two for the organism to get able to tolarate various kinds of inflammation. for our part, diet gf, sugar f, dairy f, nightshade f, non-organic corn free, with abx and supplements is a part of the treatment and kids are doing much, much better. we saw gradual improvement over 1 and a half years and going dairy, sugar, and gluten free where noticable bumps for the better. Our kids do still have issues and they are not completely without symptoms. In all, I would encourage you to take this step if this is at all possible for you -- you need to learn how to cook this kind of diet which requires time and resources. Josie 1 Link to comment Share on other sites More sharing options...
LNN Posted January 30, 2014 Report Share Posted January 30, 2014 I have no doubt those who can pull this off enjoy benefits. But I have to confess to a personal failure here. We tried GF for 9 days and threw in the towel. We were hoping it would help DS11 with an eye tic he'd had for several months and other things we'd tried hadn't helped. DS did not have elevated antibodies on the gliadin or other gluten blood work. But I was running out of ideas. If his health depended on it, we could've kept going. But it was really hard, because the whole family consists of picky eaters - many GF menu items were unappealing. So while he was able to do GF, he wasn't necessarily eating healthy. He tended to eat more sweets in place of a snack that would normally be a carb. He ate eggs for dinner more nights than either of us felt was balanced. etc. If you have a versatile eater, I think it's more doable than if you start out with a long list of things he won't touch. But I did find it more expensive and very time consuming to plan and cook. The ending to our personal story was that his blood work came back showing elevated inflammation markers for mold illness. I went hunting for mold (something i've had to do two other times on our journey) and found significant mold on his bedroom and bathroom windows. Normally, I put plastic over the bedroom windows but didn't this year. The extreme cold weather, plus windows that I forgot to lock tight in the fall (so they were open by a hairline at the top), led to higher than usual condensation and a mold overgrowth. I cleaned the windows, vacuumed with a help filter, cleaned the hard surfaces with clorox wipes, washed linens and curtains...and his eye blink greatly diminished within two days. It's mostly gone now, 12 days later. So for us, GF was worth a try, but didn't pan out. I greatly admire those who can do it! Thankfully, we found a different path that paid off. Link to comment Share on other sites More sharing options...
Ozimum Posted January 30, 2014 Report Share Posted January 30, 2014 We did a gluten free, dairy free, low grains, low sugar, little potato diet to help heal the gut...to reduce inflammation. DS had overgrowths of strep and staph and was VERY low on E coli which should be there. As a result of these overgrowths his gut wasn't absorbing the food he ate and he was skinny. The gut is fundamental for neurotransmitter production. DS did not test as having a sensitivity to gluten, only to dairy products. We changed our diet to support gut healing as one aspect of the treatment we undertook, in order to give DS the best possible outcome. It took several months before seeing a marked improvement. Our doctor said it would take 18 months to really see the benefits and I think he was right. Three years later we still maintain the diet at home, though a little more relaxed and we are still seeing subtle improvements. DS is happy, healthy and very functional. While I still worry about him, it's no longer that gut wrenching panic that it once was. I now have a life! I figured that the diet had to work for DS, so I made sure he had plenty of GF pasta and GF/CF chococate biscuits for a treat - otherwise life wouldn't have been worth living! I allowed small amounts of soy cheese for the same reason (there are many who advocate going soy free too). Also organic where possible and GMO free. I made the diet work for us - lots of meat, fish and veggies, prepared by me at home so I knew what was in his food. I still do it because it's healthy - now we seldom get sick, where before we had lots of colds! And we recover quicker. Before embarking on this kind of diet I think you should know why you are doing it and be prepared to stick to it. Link to comment Share on other sites More sharing options...
mama2alex Posted January 31, 2014 Report Share Posted January 31, 2014 I think if you can do it, you should try it for a month or two. As LLM pointed out, its easier to do this with some kids than others. Our ds13 has always been oppositional/defiant to some degree, and has not been willing to try it yet. I'm hoping to get him to do a one month trial this summer. Although he doesn't test sensitive, I think its probable that gluten is a problem for him, since its a problem for me and we both have Lyme. I'm hopeful that if it helps him feel better, he'll decide for himself to stick with it (the only way it will happen longer term). I've been gluten-free for 8 years. For me it ended daily headaches and constipation within 3 days. I never tested celiac-positive, allergic to wheat, or gluten sensitive. A year and a half after going gluten-free, I had to drop dairy due to returning headaches. Link to comment Share on other sites More sharing options...
mdmom Posted January 31, 2014 Report Share Posted January 31, 2014 4.5 years ago we originally embarked on our journey treating chronic debilitating symptoms that no mainstream doctor could link together. I was so frustrated because at that time my daughter was chronically physically ill and missing a lot of school and my son was close to institutionalization due to extreme psychiatric symptoms. I was being treated for anxiety and my husband was angry all the time. All of us had GI issues and both my husband and I had precancerous colon polyps removed in our 30's. I was desperate for help, which led me to an off-the-beaten path holistic doctor that took one look at everyone in my family and firmly told us that we should eliminate gluten and dairy. I figured I had nothing to lose, so we went cold turkey and within weeks we saw improvement in some symptoms. It was not a panacea by any means, but it certainly seemed to take the burden off of our immune systems - we discovered 1 year later that we were dealing with PANS, Lyme & Co. When we first met our LLMD she recommended a GF/CF too to take the load of the immune system. I was so relieved that we had already been GF/CF by then because the treatment protocols for Lyme & Co were so overwhelming - I couldn't imagine managing a new diet and this at the same time. The improvement we noticed within weeks of eliminating gluten and dairy was immediate reduction in GI symptoms - no more gas, bloating, diarrhea, constipation. I believe this was the beginning of our healing process. My husband and I both have colonoscopies every 3 years and since eliminating gluten/dairy we no longer produce polyps. The diet certainly isn't easy in the beginning, but if you try it, I highly recommend that you do it 100% for a few months to see if it helps. A little gluten here and there is just as bad as a lot of gluten all the time if you are looking to reduce inflammation. If you want a sample of a day's menu for my family, PM me and I will send you one and include some of our favorite GF brands. Link to comment Share on other sites More sharing options...
SSS Posted February 1, 2014 Report Share Posted February 1, 2014 It reduced inflammation in my dd, so we (my husband too, who when he notices or weighs in, it's very substantial) have her 100% gluten, dairy, food dyes, HFCS FREE, she is calmer, and her thinking is clearer. And she gets better nutrition, less sugars on this way of eating. It seems completely daunting starting out, believe me, I know. But if you just give it a 3 month trial (key: it HAS to be 100% or it doesn't work) you can always go 'back' if you see no positives. Link to comment Share on other sites More sharing options...
JoyBop Posted February 1, 2014 Report Share Posted February 1, 2014 (edited) We tried it for 3.5 months last June. Honestly, it didn't help him in the least, but it did create a while new host of things to obsess over. To be fair, I found he had been cheating (or at least had obsessions that he had) and then felt guilty for doing so. I never caught him doing it but I can't say with certainty that he didn't. Either way, it was a disaster and gave us volumes of new problems not to mention expense of foods. I guess its best if the child is on board and can handle these changes. Now I see my kiddo is obsessed with food so it's no wonder it back fired. Then again I can't help but wonder if it was our attempt at his diet that caused the obsession. I guess I'll never know. We are now dealing with helping him make wise food choices and getting more activity. Choose your battles! Edited February 1, 2014 by joybop Link to comment Share on other sites More sharing options...
SSS Posted February 1, 2014 Report Share Posted February 1, 2014 9 signs you have a leaky gut: http://www.mindbodygreen.com/0-10908/9-signs-you-have-a-leaky-gut.html (below is a chart I am pasting about yeast overgrowth) What Does Yeast Overgrowth Look Like? Yeast overgrowth manifests itself in two forms – behavior and physical. Behavioral signs: Headaches Inappropriate laughter Sleep disturbances Unexplained intermittent crying episodes Belly aches Constipation Bed wetting Gas pains Fatigue Depression “Foggyness” Inattention Hyperactivity Anger, aggression Increased self-stimulatory behavior High-pitched squealing Increased sensory defensiveness Climbing/jumping off things Sugar cravings Confusion Lethargy Inability to potty train, or loss of this skill Self-limiting Foods Plateauing in skills Physical Signs in the mouth, in the form of thrush on the skin such as diaper rash or eczema red ring around the anus Link to comment Share on other sites More sharing options...
JoyBop Posted February 1, 2014 Report Share Posted February 1, 2014 Where did you get that list? According to your list, yeast overgrowth is the same throng as PANDAS. Link to comment Share on other sites More sharing options...
SSS Posted February 1, 2014 Report Share Posted February 1, 2014 I'm just putting information out there Joy. If you google Leaky gut signs or Yeast overgrowth symptoms in children A variety of sources come up. Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted February 1, 2014 Report Share Posted February 1, 2014 So how do you treat leaky gut? Link to comment Share on other sites More sharing options...
JoyBop Posted February 1, 2014 Report Share Posted February 1, 2014 Everyone one oft kids symptoms are in there! My child actually had leaky gut when he was younger but didn't have any of those symptoms. So according to that list, all of our kids could have leaky gut and not pandas. Or, let me rephrase it by saying something Dr. Bock had us all repeat after him out loud. "Leaky gut, leaky brain." But what does yeast overgrowth have to do with leaky gut? Or am I confusing two different concepts here? To play devils advocate, if these kids really had yeast overgrowth at onset, abx would make them worse and not better. I'm not sure I totally but that that lengthy list is common for yeast, but it is certainly an interesting thought. Link to comment Share on other sites More sharing options...
SSS Posted February 1, 2014 Report Share Posted February 1, 2014 The symptoms might be thought of in terms of inflammation. Why does ibuprofen work? Reduces inflammation. Why HIGH dose IVIG? Reduce inflammation. We are not on a 'diet' with GF/CF very low sugar, it's just a way of life. It's good food available at home. I pack a lunch everyday for school she really likes. I gave her teacher GF/CF chocolate chip cookies to keep and give to my dd anytime there is a treat in the class. Not a big deal. Here is a paragraph I copied off the Internet about candida causing 'leaky gut' 'Candida overgrowth (candida albicans) can lead to candida yeast infection and Leaky gut syndrome which is medically referred to as intestinal permeability. Leaky gut is a major gastrointestinal disorder that occurs when openings develop in the gut wall. These tiny holes can be created when candida overgrowth moves to a more serious stage of candida yeast infection and the candida yeast grows roots or hypha (plural hyphae) which is a long, branching filamentous cell of a fungus. This fungal growth is a more advanced stage of development in the candida albicans yeast infection. The hyphae spreads the bowel wall cells apart so that acidic, harmful microorganisms and macromolecules are then able to pass through (leak) these openings and enter the circulatory system. Thus the name Leaky Gut. The body is alerted to the invader and creates antibodies for protection, activates the immune system, and thus is born a food allergy. Food allergies are directly linked to leaky gut and candida yeast infection overgrowth.' rowingmom 1 Link to comment Share on other sites More sharing options...
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