Caryn

I just wanted to add a clip from an article written by Dr. Rodney Ford, pediatric gastroenterologist. The article can be found at: http://www.celiac.com/articles/21521/1/How...osed/Page1.html Thought I would share.

If foods like pizza are causing major triggers then you need to consider that cerebral allergies to one or more of the top four foods may be present: wheat eggs milk corn And most importantly, there may be a problem with candida overgrowth. We are gluten free (no wheat, barley, rye, or oats that are not alisa tested and labeled gluten free), corn free, and dairy reduced. Our story is written here: http://healthy-family.org/caryn/289 We are now tic free since just after Christmas, consistently. We have been gluten and corn free for almost a year. Our anniversary is just after St. Paddy's Day 2007. That was the last time our son had pizza. (Well, the glutenous kind). We took him to a party at our church and we all had donuts at breakfast, pizza at lunch. He had to leave the party 20 minutes after the pizza because he erupted in tics so bad and became very irritable. Hope this helps. Caryn P.S. dark circles under the eyes is a big indicator of a food allergy, especially problems with wheat and milk.

Hi Nan! Does your daughter typically have wax ons like this? Is she also having trouble sleeping? Does she have other common allergy problems besides histamine reactions? Tummy upsets? Dark circles under her eyes? It could have been a case of the gitters, especially if she is typically shy. But if you see a pattern prior to the wax on, one that includes irritability, tiredness, tummy aches, dark circles, spaciness, sometimes even hyperactivity, it could be a food allergen as well. How does your daughter eliminate? That could be a sign as well. What did she eat prior to the outing? Was it significantly high in a certain kind of food that she wouldn't normally eat so much of? If it was a processed food, get out the box and look at the ingredient listing. Many of these kids are extremely sensitive to additives and preservatives, especially food coloring and MSG. Some of these kids are very sensitive to their allergens and a tiny amount can elicit ticcing. A huge amount will send them into a flurry of ticcing. Keep an eye on her and watch what she is eating the next couple of days. If it is an allergic response the tics could last up to three or four days, slowly winding down until the allergen works its way out of her system. Keep us updated. In the mean time I hear epsom salt baths are good. Caryn

This is a Cross-post on the link between autoimmune disorders and celiac disease. I left this response in a penicillin thread but thought it was valuable enough to keep in the wheat thread for anyone researching gluten intolerance in general. I just want to mention that in a quick google search I found scientific journal articles connecting (loosely) the simultaneous presentations of celiac disease and lupus. Lupus, or any autoimmune disorder, is quite often a sign that a genetic screening for gluten intolerance and a biopsy for celiac disease should be considered. Celiac and autoimmune disorders go hand and hand on most celiac forums I visit. Here is a PDF that explains the many autoimmune disorders connected to gluten (Lupus is on this list): http://www.gluten.net/downloads/print/Asso...neflat12-06.pdf I understand the need to check for PANDAS, but I also think that it is vitally important to screen for gluten intolerance/celiac disease in cases where an autoimmune disorder is already present and the parent sees the onset of tics. Could this be a leaky gut issue? Candida overgrowth affecting the brain? Don't antibiotics also kill candida (and everything else)? Caryn

Gluten Lady here again. I just want to mention that in a quick google search I found scientific journal articles connecting (loosely) the simultaneous presentations of celiac disease and lupus. Lupus, or any autoimmune disorder, is quite often a sign that a genetic screening for gluten intolerance and a biopsy for celiac disease should be considered. Celiac and autoimmune disorders go hand and hand on most celiac forums I visit. Here is a PDF that explains the many autoimmune disorders connected to gluten (Lupus is on this list): http://www.gluten.net/downloads/print/Asso...neflat12-06.pdf I understand the need to check for PANDAS, but I also think that it is vitally important to screen for gluten intolerance/celiac disease in cases where an autoimmune disorder is already present and the parent sees the onset of tics. Could this be a leaky gut issue? Candida overgrowth affecting the brain? Don't antibiotics also kill candida (and everything else)? I will cross post this in the Role Wheat Plays.... thread as well for anyone who is following that thread linking research, etc.... I hope you don't mind, Chemar. Delete this one if you want to. Caryn

Houston Nutraceuticals advertise that they are gluten, casein, soy, and MSG free. No artificial colors, preservatives. http://www.houstonni.com/

Judy, I can relate to your frustration. Keep fighting for your grandson. If there is one thing I learned last year it is that I alone had the wherewithal to help my son because I made it my business to get answers, even when the doctors couldn't provide them, just like you are doing now. I am so happy that he is getting better. Can I ask what you have done diet-wise to help in his recovery? Most members here report that avoiding all the artificial stuff is important. I totally agree. Judy, maybe you could look into foods, too, as a next step. Have you read Michael Pollan's new book: In Defense of Food: and Eater's Manifesto......? I was really inspired by it. He gives a lot of advice on how to avoid the pitfalls of the western diet.... a diet so rich in what he calls "food-like substances" rather than real whole foods, that it is costing us billions in health care. Michael humorously tells us that we need to avoid any ingredients our great grandmothers' wouldn't recognize as food. This is a tough time of year to eat good fresh organic foods, as it costs a fortune when it is not in season, but you can simply start to avoid some of the main tic triggers: food colorings, sodium benzoate, and all ingredients that are really a form of MSG (monosodium glutamate). http://www.truthinlabeling.org/hiddensources.html, and preservatives in general (even citric acid could be a problem for him-- be sure to get fresh squeezed orange juice, avoid the ones in the boxes or single serving bags-- the fresh stuff is so much healthier.) Get him to drink more water, too, if he isn't a very big water drinker. This could also help him eliminate toxins faster. I think most moms here will agree that when they go back to organic, all natural foods (that God intended us to eat) their kids do better. It is frustrating, I know. Aside from avoiding known allergies (which would be your last step), this is a great way to lesson the severity of the tics. I am glad he is also responding to the vits. That is good. keep us updated! Caryn

Kim, Do you have this link in your arsenal? http://www.whale.to/b/blaylock.html

Thanks Kim! I added your link to the original blog post along with a summary. It is a good one because it spans 8 years of results. I also linked up a couple of educational you tube videos that Dr. Rodney Ford made for pediatric patients on the whole metabolic issue since my original post. The first one is really simple, short, and powerfully educational for children. (He uses a lot of props including large legos.) Anyone needing to do gluten and casein free with their child (4-10) and getting some resistance should take a look at these cuties together. It will spark some interesting discussion. Tigger loved the first one. The second is more for older kids and adults. Caryn http://healthy-family.org/caryn/360

Sounds like it could be exposure to an allergen. Tigger was like that quite frequently in the beginning, before I got a handle on things diet-wise. He used to have sickly looking eyes, sort of watery looking. We too saw the dark circles. That is noted in Doris Rapp's book about neurological allergies, too. The wax on used to last four days. As long as you are no longer introducing the allergen there should be a wax off on the fifth day and return to normalcy after that. This must be how long it takes the body to rid itself of the allergen. I found this pattern pretty consistent. This was how I finally figured out he couldn't have citric acid. I had pretty much gotten all manner of foreseeable corn out of his diet, except he kept getting flare ups from time to time. When I got rid of the citric acid he totally stabilized. (We now only do fresh squeezed juice and only get Eden Organic spaghetti sauce, among other things I changed around here.) Citric acid, for anyone interested, quite probably has MSG in it, which is a whole new reason to avoid it. So my son's reaction to it may not be because of his corn allergy but simply because it is a neurotoxin in and of itself. --BTW--- I often wondered about his many vits he was once on as well. As it is impossible to get vits without citric acid or ascorbic acid. Just a thought for anyone else struggling with corn or MSG reactions. Here is an article about that: http://www.westonaprice.org/msg/msgfree.html Hang in there. You will get your IgG results soon and then you'll be able to figure out what exactly is making him tic. It is frustrating, I know. On the upside, after avoiding the allergens for some time his tolerance will improve, at least that is what we saw here. I'm just not getting any neurological symptoms now. Thought I did maybe a couple of days ago when Tigger ate nearly a pound of gouda cheese. He just helped himself while I was upstairs. Ugh! I thought I saw a nose twitch, but it was gone the next day. Now six months ago that would have sent him into a flurry of stuff. I wonder if he really did have a leaky gut and the diet healed it? From what I've read that seems like the case, but I have no lab testing to prove it. Caryn

Itchy ears sounds like an allergic reaction. What kind of pillow was it? What kind of detergent? Also, itchy skin is common symptom of food intolerance. For example: Rest of article can be found at: http://www.celiac.com/articles/759/1/Early...e-MD/Page1.html Absence of gut symptoms does not mean the absence of allergy or intolerance. Gluten proteins have an insideous way of coming out in all manner of places-- gut, intestines, brain, skin.... and it takes a long time to get rid of them if you are gluten intolerant. Could be an allergy to something else, too. IgG will probably tell you that. For me, every time I eat gluten now I get itchy elbows. Used to have dermatitis herpetiformis on them but that went away when I went gluten free. This is how I know I've had gluten somewhere in the diet. Helps me sleuth. Just my two cents. Hope this helps. Caryn http://healthy-family.org

It can also be a sign of an allergy. ie: wheat, corn, milk. Milk is a big trigger. Could also be biological, too. If it is hereditary it could be a mechanical thing. In our case we see a direct correlation with diet.

A couple things- If your child has had an allergy test and is known to be allergic to an ingredient in the shot you can opt out. You may also be able to opt out for religious reasons. If your child is undiagnosed celiac the vaccines may not render them immune anyway (as per a clinical study). Probably not relevant here but I always like to throw that in. And lastly-- Probably totally off topic, but somewhat relevant here: According to the manufacturer, Varivax–Merck chicken pox vaccine (Varicella Virus Live), contains L-monosodium glutamate and hydrolyzed gelatin both of which contain processed free glutamic acid (MSG) which causes brain lesions in young laboratory animals, and causes endocrine disturbances like OBESITY and REPRODUCTIVE disorders later in life. It would appear that most, if not all, live virus vaccines contain MSG. In our case we had the varicella before we got a reaction (and our son has issues with gluten as you all know) but it is a good fact to put out there because we know MSG is a major trigger for some folks. Just learned this tonight when I was going through info on MSG. Caryn

Shannon, Chiropractor is a good idea. We did that with our son. He had injured himself playing and the muscles in his neck were pretty bad. The doc made three adjustments and he was great after that. I know there is some anecdotal evidence about chiro for tics. In our case our son had multiple tics and the chiro visit did not resolve our issue. All moms here will tell you that stress plays a major role. He will probably settle down in time. He probably inherits some of that worrying from you and with the new house and everything, his stuff out of place, his routines out of order, he may just be keyed up. Caryn

Wyatt's Mom, Is your child functioning above average for his age? There seems to be many reports of childhood tics among gifted children (not TS symptoms or Pandas, etc....) I am just talking about light ticcing here-- The theory is because these kids are overachievers they tend to have tremendous more stress that they put on themselves, perfectionism, etc.... And with the recent move he may be feeling more anxiety than most. It sounds to me like Wyatt has a very mild case and I wouldn't worry too much. Just keep an eye on him and see if it increases. Caryn

You said the tics were completely gone on the amox, even though it was with yogurt? Are you sure the amox is the thing that stopped the tics? You said she came down with strep? Was she eating at the time? Kids with food allergies/intolerances will show improvement or complete lack of ticcing when they are sick and not eating. (My ds was one when he still had symptoms). As soon as the offending food is reintroduced then the symptoms will reappear. This is a common observance from many folks here who have kids with food issues.

Hi! I'll jump in here, but I am sure there will be more to follow.... Welcome to our forum and we hope that we can help you. Take a deep breath. The beginning is the hardest part. It will get easier with time, honestly. I think I lost the most sleep in the first three months after the onset. Our cases are similar. My ds started his first tic just before he turned four as well. In our case we saw a dramatic change when we went gluten free, casein reduced, corn free, low sugar, and organic. So in our case the key was diet. There are many parents here who have tried different treatments and have kids with different triggers. Our job as parents is to play detective and figure out what our child's triggers are. It is not easy, but it can be done with some good sleuthing. I just have a few questions for you to think about-- the answers may help lead you to possible causes and help you to pinpoint the best treatment options to start with. How is he doing overall? Is he in preschool? What does the teacher report? Is he sleeping good? Does he appear to have digestive problems? How is he growing? Does he have seasonal allergies? What is his diet like? Has he recently been sick or been exposed to a virus or bacteria? When were his last vaccines? What was he given? Has he had a history of antibiotic use? Many here start with an elimination of artificial colors, flavors, and preservatives and see improvements almost right away. Vitamins are also a common option, as are epsom baths. Anyway, welcome. I could ramble on but I am sure there will be plenty more with better things to say. Caryn

Our ped had a fabulous rubbery device with little bristles on it. (kind of like a brush). He had me use that on Tigger's other arm and we talked about the needle feeling the same way. In the mean time, while we were conversing, the ped stuck the needle in his arm and he didn't notice. When we did the IgG test (after this) I had Tigger count to 100 with me. Worked great because he loves being smart. He felt like a show-off to the nurse! When we had his full blood work up (seven vials in total) we did the same thing, and the nurses (there were three) could not believe they did not have to put him in a full nelson. Act like it is no big deal, be nonchalant, distract him with cool conversation, and bribe him with an awesome reward afterwards (like my chocolate chip cookies). Things may get hairy and when they do just distract, distract, distract. Thanks for the compliment on the recipes! BTW. Anyone is welcome to eat at our house! The more the merrier! Also, if you are getting good results with the diet you may just want to forget about the IgG. For the test to be accurate the child should have regular (recent) exposure to the foods. You might end up with a test that isn't as accurate because the foods have already been removed and the antibodies have already begun to go down. Try it for three months and then do a challenge on one food. If you don't see a reaction, add that food back. Then do the same after six months. I know six months sounds like forever. (For us six months marked Chuckles birthday, so we kept shooting for that day as our goal and our 'turn around' date for going back to a normal diet.) Well, by the time Chuckles b-day rolled around I was sold. There was NO going back! And, the test costs a whopping $349 for the cheap version. (our insurance only covered a small portion of that.) Okay if you really want to know, but not necessary if you can already do the diet with success.

And chronic reoccurring infections and chronic 'flu-like symptoms' that seem to constantly morph and reappear are a sign of food intolerance/allergies. It all goes back to the gut. Always be sure the kids are eating good and if possible test for allergens too.

ooh! I think SSRIs are too dangerous! Diet is much better, more natural, safer. Our ds had OCD like tendancies in the very beginning when his symptoms were at his worst. That faded and disappeared with diet. Takes time. But works. FYI 33% of schizophrenics were found to be undiagnosed celiacs in a study by Walsh of the Pfeiffer Center. Gluten lady at it again! Ugh! Y'all sick of me yet? http://healthy-family.org/caryn/402 (for more info on SSRI dangers) also view the Gary Null video that I link to if you want more info on ADHD drugs as well. Scary stuff! Caryn

Tracey, Yes, save the gluten for last. I think you are going about it the right way. One thing at a time and careful observation. We used the GABA in the beginning and I felt it helped a lot, especially with my Tigger's high anxiety issues and mild pyroluria. It took the edge off and really helped him to relax. We dropped the GABA after being gluten free for about five months. I agree that when you commit to the diet it has to be all the way and you have to commit for at least six months. We did not get results until the fifth month. Now he is symptom free for over a month and without supps. It takes time to heal the gut. As far as corn. I hate to say this, but it is easier IMO to be gluten free than it is to be corn free. It may very well be that the corn is a major trigger for your child. Check out Jenny Connor's site: http://www.cornallergens.com/list/corn-allergen-list.php I used to refer to it regularly for help and information. She is highly allergic (intolerant) and so her list will reflect that. Our son is highly reactive too, and so we are pretty extreme on our avoidances (no white vinegar, very limited on commercial iodized salt, no corn starch, corn syrup, corn flour, not even 2% or less..... ) We buy special condiments for our ds and basically bring them with us in a cooler bag wherever we go. We are also very careful with hygiene products (it is in most soaps and shampoos). Are you getting nauseated yet? I'll stop there. Anyway, if you want to cut back on corn start with the biggies first and see what happens. Then get goofy like us and bring it down to the nitty gritty. According to many corn allergy (intolerance) sufferers the levels of tolerance vary. Some don't even buy meat that comes from corn fed animals! Corn is dusted on many cheeses and can also be in meat packaging. Check out my safe-products list for some safe stuff. http://healthy-family.org/safe-products It is not a complete list. I just add to it whenever I discover something so that I don't forget. To really root out the corn you have to contact the manufacturer's of the food one by one and wait for a response. It is time consuming and annoying! Thanks to the corn refiner's association and their lobbying power corn is not a recognized official allergen. Grrrr. As far as vax's go, I think that for some kids the digestive issues due to allergies/intolerant foods in the diet create faulty immune responses and in some cases the vax just kicks it into high gear and causes an autoimmune response. BTW I also taught kids with special needs for seven years before Tigger was born. I know EXACTLY how you feel. You've got that MAMA FIRE burning under your feet because you don't want to see the same thing happen to your baby. That passion will serve you well, just don't let it make you crazy too. Try to get some sleep. The answers will come in time. One thing I think God has really taught me this year (in spades) is to have patience. And a lot of faith. You will know when you are on the right path, but it may take some time before that peace settles in your heart. Thank God you are a teacher. Sometimes I look back at some of the students I used to have and wish I could use what I have since learned about diet and supplements to help their parents cope. Imagine how much you will be able to help others in due time.... Caryn

Just PM me for details, Tracey. I would be happy to help you with more info. I hate to broadcast their stuff over the internet, but I would be happy to thumb through the stuff if you want info on specific brands you use a lot, etc.... Off list of course! Also, I just want to add that gluten intolerance will cause ADHD symptoms according to recent research. Apraxia is a common side effect of a neurological manifestation. If you have a 'clumsy' kid (ataxia) who has trouble verbally-- mixes up his/her words in conversation ie, says the opposite of what he/she means, has poor word recall, substitutes similar words out of context.... ie: Put the dishes in the washing machine, oh, I mean dishwasher. That kind of thing. There is currently no specific research connecting tics to gluten intolerance but there is a growing number of research on ADHD and gluten in the diet (for those that are gluten intolerant). Currently some experts believe that 10% of the population is gluten sensitive to varying degrees. Sorry ladies, I know I sound like a broken record. Caryn

I echo Cheri's sentiments wholeheartedly, Tracey. I just want to add that the cure may take quite a long time. Don't expect an immediate, overnight cure because you started doing something. Diet is not like drug therapy. There isn't a 24 hr. time period where results can be noted (most of the time). In our case we were on a new diet over 3 months before we got great results. We just saw a gradual decrease in tics over time. If you want to view my little blog I have a section full of Feingold recipes (that are also gluten and corn free (many dairy too). Feingold doesn't go that far. But at least you could get the gist of it without spending the money on the program first. There are some foods high in salycilates that I use in moderation for my ds. If so I will mention that in my description/listing. For example, I have some recipes with tomato sauce in them. Feingold also has a website that you may find quite helpful. I joined last year and got a huge welcome packet that included a safe foods booklet but to be honest I never utilized it because most of the foods are wheat and corn based. My recipes are just whole foods, for the most part. In the beginning I relied a lot on commercial GF products but I am getting away from that as it can really kill the budget. The most simple rule of thumb is this: When you are at the grocery store look for organic condiments. If a package lists ingredients that you cannot pronounce or don't know what they are, then don't buy it. You can do this without breaking the bank, and if you buy in bulk from places like Costco you could save a lot of money. Costco sells a lot of organic products, including ground beef, chicken, and several varieties of veggies. I have also found organic juices there that we can have. We do not buy purely organic but we try really hard to do it as much as possible. Take a deep breath. This isn't easy, but I promise you it will get better. You just need to find out what makes your child tic and then do whatever you can to reduce those triggers. And yes, as Cheri pointed out, for some kids there will be waxing on of tics at times regardless of what you do (but the overall severity and duration will diminish as healing takes place). Caryn

Faith, I talked with a representative from Houston Nutraceticals that claims it works better with a 'healed' gut. Some families will start them and get an increase in symptoms, sort of an 'opiate' withdrawal effect. Some have a bad time with them and then after six months doing a diet, like GFCF, can go back to them no problem. I guess it depends on the kid and severity. Some can never use them for whatever reason. It can't hurt to at least try, especially if you have a child that is not really cooperative with an elimination diet. Just be sure that the enzymes are taken with every offending meal. (Can be quite expensive if you take them with each meal). Your ds is older than mine, so he would be more able to navigate his food choices and avoid allergens when necessary, and also take the enzymes as needed. I have given them to ds for milk/cheese but not yet for gluten. We are still doing the diet, but I have them for 'reserves' to use when we go out to eat and can't avoid cross-contamination. I have tried them on myself (I'm gluten intolerant) and found that they work digestively. I still had inflammation in my hands the next day though. I ate a burger on a bun-- (so it included yeast, and I have a problem with yeast personally). So for Tigger, I am hoping that the enzymes will eliminate puking episodes and explosive diarrhea from gluten cross-contamination (doesn't take much, poor little guy). Right now he has no neurological symptoms at all. Hasn't ticked in about a month. I am a bit gun-shy on using the enzymes with gluten and yeast, as he is so reactive. (And because the enzymes don't really break down the yeast well). I think candida overgrowth may make them less effective. Just my opinion, not based on hard evidence, so take it for what it is. I finally feel like we have conquered the beast after a year of careful dieting. I really don't want to give the candida a chance to re-colonize. Caryn

It can be made from corn so if your child has a corn allergy it is out.