Caryn

Sarah, I have not done NAET with my son (now 5 1/2), but he has been stable with no wax ons for over a year now, despite occasional illnesses. Like your son he has the celiac gene and has since been diagnosed with celiac disease by our general practitioner as he had all the classic symptoms for years (infancy) but never a biopsy. So the doc figured if it walks like a duck, quacks like a duck, and looks like a duck, then by golly--- it is a duck. The cure for our son is a strict gluten and corn free diet. We used to have to eliminate dairy too but he now has it in small doses in rotation without incident. If you want to read our story it is at: http://healthy-family.org/caryn/289 I have since come to believe that the untreated Celiac precedes the T.S. and actually causes the onset of T.S-- but that they are two separate conditions. (Our son has the celiac gene associated with other autoimmune disorders). There is no official proof as such that this is true. Neurological implications of gluten toxicity are an emerging science. Our son will mildly tic after gluten or corn ingestion (like a mild eye blink), that may last a day or two. If he has any type of artificial ingredient he will tic for 3 days. Due to the nature of T.S. we have a strict Feingold diet as well and eat as organic as possible. I do not feed my kids refined sugar either. We too had multiple bouts of croup and our son also had many courses of antibiotics before the GF diet. Our son was majorly zinc deficient and anemic despite being high in copper when we originally tested him. He had the classic dark circles under his eyes and was small for his age despite the fact that mom is 5'9 and dad is 6'0. He weighed the same has his brother two years younger. He now is growing great, looks much healthier, and no longer has dark circles. He sleeps 12 hrs at night and will sleep in in the morning-- no longer a light sleeper. I could go on and on. I really am amazed at his progress and so is he! Candida is most probably a problem too, so check into that and possibly rule it out. Caryn

We got the Pyroluria diagnosis through a urine test last summer when Tigger was still waxing and waning a bit. We discovered his food allergies shortly after and began an elimination diet. He had his vits compounded at that time and a long time after we changed his diet I noticed that the vits were too much for him on a daily basis. I kept the pyroluria vits on a shelf and just used basic supps for overall health and 'maintenance'-- B vitamins, fish oil, magnesium, and methionine or GABA at night. Having said that, the doc told us that stress is a trigger for pyroluria and that it can flare up from time to time. We recently went on holidays to visit family overseas and Tigger had a flare up (sleeplessness, fingernail biting). He is currently tic free except for the occasional nail biting. I am giving him the pyroluria vits again (a half dose of the original prescription) and that has eased it off again. His diet remains consistent.

I am spreading the word. I got this message off of another list: A group of parents on an Autism list are starting a letter writing campaign to Michael Moore. They are asking him to do a documentary on vaccines. His email address is mike@michaelmoore.com. You can learn more about vaccines at http://www.talkaboutcuringautism.org/index.htm If you have seen a correlation between the onset of symptoms in your child and the issue of their vaccines, you may want to write him with this request. Be sure to include the phrase: "Please consider doing a documentary on vaccines" in the subject line of your letter. Caryn

My ds (Tigger) was on the low end of the growth charts before we changed his diet. He has been gluten and corn free (and organic/all natural) for over a year now and has had tremendous growth in both height and weight. Inadequate growth in weight and height is connected to celiac in kids. (Due to major malabsorption issues that lead to nutrient deficiencies and poor growth. (My son is dx'd celiac by our G.P. and has the celiac gene related to other autoimmune disorders) I believe the undiagnosed celiac he had (I think from birth) contributed to the development of tics/T.S. after he had his preschool vax's 1 1/2 yrs ago. Just our case here. Can't speak for every situation.

It can also be a sign of food intolerances. Have you ever been tested for allergies? Food sensitivities? What are you eating regularly? This may give you a clue.

Guy, I just got my Celiac Newsletter in my inbox from the U. of Chicago. They have an article about weight and celiac. http://www.celiacdisease.net/assets/docume...ews.v5final.pdf As far as studies about a correlation between tics and Celiac-- I have yet to find any that have attempted to look into a possible connection. I can only say that there is strong anecdotal evidence gluten may be a contributing factor. The type of celiac gene my son has is STRONGLY associated with other autoimmune disorders. This is something not widely looked into but warrants further study. I suppose since diet is the only treatment it puts a damper on big pharma possibly sponsoring such a study. Anyway, celiac has lots of neurological associations including Alzheimer's and Ataxia. Don't rule out the possibility. That is all I am saying. Made a world of difference in our son.

Guy, Mono would be a significant catalyst for the onset of an autoimmune disorder. In our case my ds (now 5 1/2) developed tics after his preschool vax's. The short of it-- we recently discovered that he has the celiac gene and it is our understanding that his diet along with the vax's may have contributed to the onset of his tic disorder. His G.P. has since diagnosed him with celiac. His symptoms started with eyeblinking (hard blink) and continually worsened over time until we changed his diet. He is now stable for about a year and has greatly improved. Not the case for all people suffering from tics but made all the difference in our situation. Take a look at some of the signs and symptoms that are common with undiagnosed celiac and see if there might be a reason for you to look into it further. When you mentioned problems with gaining weight despite diet and a high metabolism it jumped out at me. You can have celiac without digestive problems. They call that silent celiac. Celiac is connected to schitzophrenia, OCD, ADHD, chronic headaches, depression, etc..... as well. If you want to read our story, it is at: scientists have discovered that celiac disease can be the root cause of most neurological disorders Best of luck figuring it out!

Relevant for you folks, I think-- Just got this from my med nauseum subscription:

I spent the last three weeks working on this little research project. It was an eye opener for me and I'm glad I took it on. I learned a lot. Anyone having some time and wanting to check it out visit: http://healthy-family.org/caryn/486 I have to warn you, it is long. Sorry about that. I kept trimming and trimming but there was just so much information.

Nope. A mom on another forum told me to get the IgG otherwise I wouldn't have had a clue. The IgG results showed wheat and corn and gluten intolerance among other lesser ones. By act of God, really, I was invited to join a private forum for celiacs by a woman who read a response I made on a closed educational forum (at the time Tigger was having issues at preschool). I was overwhelmed to say the least back then. The IgG docs talked about doing an elimination and then rotational diet. It highly suggested eliminating the wheat and corn for good based on his levels. I didn't have a clue about gluten or Celiac. The celiac folks taught me the rest over the next year. Some of them have been doing this for 10 years. Great people. They told me what tests to take and what the test results mean. Whole families have it in some cases. C.D. is much more common than docs think. A family of 7 on that group list all got genetic testing. Their 11 year old with ADHD was dxd with celiac. After testing the whole family they found out both mom and dad had celiac gene and all five kids had at least one celiac gene. The youngest had two and was eating pasta every day! This is an area where most docs don't have much knowledge. My blog forum has a section about treatments and in there I posted how you can find a celiac specialist. But the cheapest is to go through Enterolabs.

I'm a bit late joining this thread and I haven't fully read all the responses, so forgive if I am repeating myself. There is a correlation between seizures and C.D. (celiac disease). I will drop a few studies here with text for ease of read, okay? If your child has other symptoms as well you may want to ask your doctor to screen for gluten antibodies in the blood and then follow through with a genetic screen if that one does not determine celiac disease. Successful Treatment of Epilepsy and Celiac Disease With a Gluten-Free Diet . Pediatric Neurology , Volume 33 , Issue 4 , Pages 292 - 295A . Mavroudi , E . Karatza , T . Papastavrou , C . Panteliadis , K . Spiroglou Abstract Celiac disease is a gluten-sensitive enteropathy, which recently has been described in association with epilepsy or other neurologic disturbances. This study describes a case of a 7-year-old female with intractable-to-treatment epilepsy and late-onset celiac disease, who was treated successfully with a gluten-free diet plus antiepileptic therapy. It is important for children with intractable cases of epilepsy and weight loss to undergo screening for celiac disease. Range of Neurologic Disorders in Patients With Celiac Disease Nathanel Zelnik, MD, Avi Pacht, MD, Raid Obeid, MD and Aaron Lerner, MDFrom the Department of Pediatrics, Carmel Medical Center, The Bruce Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel (full text online) Neurologic Manifestations Neurologic disorders or findings were found in 57 (51.4%) patients with CD: 22 with a single manifestation, 23 with 2 manifestations, 7 with 3 manifestations, and 5 with 4 manifestations. In contrast, only 42 (19.9%) control subjects reported the presence of neurologic disorder: 26 with a single manifestation, 12 with 2 manifestations, and 4 with 3 manifestations. None had >3 manifestations. Although patients with the late-onset form of CD were somewhat more prone to develop neurologic disorders than patients with the classical infantile CD (54.7% vs 48.3%), this difference was not statistically significant (P = .5). [additional text omitted] Epilepsy and Other Seizure Disorders Four patients with CD had benign febrile seizures during infancy, and 4 had nonfebrile seizures: 1 with benign partial epilepsy, another with a single unprovoked nonfebrile seizure, and 2 others with chronic epilepsy (including 1 patient with intractable epilepsy associated with occipital cerebral calcifications). Three control subjects had benign infantile febrile seizures, and 3 had epilepsy (1 with partial complex seizure and 2 with generalized tonic-clonic seizures; Fig 2). Learning Disabilities and ADHD In contrast to the usual male preponderance in children with these conditions, among patients with CD, male and female patients were almost evenly affected: 13 (20.3%) of 64 female patients and 10 (21.2%) of 47 male patients. Ten patients presented with the classical infantile form of the disease, and 13 presented with late-onset symptoms (including 1 asymptomatic patient). Three patients had mental retardation, and 3 patients had seizures. Among the patients with mental retardation, 1 had Down syndrome associated with moderate mental retardation; 1 had epilepsy with occipital calcification; and another had mild mental retardation and autism, but no specific cause was found. In the control group, male subjects were predominantly affected: 11 (12.9%) of 85 versus 11 (8.7%) of 126 among female subjects. Two control subjects had mental retardation, 1 with Down syndrome (Fig 2). Here is a nice well rounded article about CD for beginners: (From the American Family Physician) Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You ThinkDAVID A. NELSEN, JR., M.D., M.S., University of Arkansas for Medical Sciences, Little Rock, Arkansas And here is an exerpt about seizures: NEUROLOGIC MANIFESTATION Cerebral calcifications and epilepsy have been associated with celiac disease29,30 and do not always resolve with the institution of a gluten-free diet. Peripheral neuropathy, postural instability, "gluten ataxia," and other vague neurologic complaints may be the sole manifestation of gluten-sensitive enteropathy.31 Autoantibodies associated with celiac disease have demonstrated a strong affinity for brain vasculature.32 It is important to mention that although in some cases the seizures resolve themselves without medication after a GF diet begins, this is not always the case. Most stuff I read refers to the use of medication in conjunction with the diet. I will say some prayers for you as you try to figure all this stuff out. You are in a tough place.

In our case we were on the diet 5 months before we saw results. I think many may attempt to do the diet without testing (so they are not certain of particular allergies/intolerances) or they do it incompletely/incorrectly out of a lack of knowledge-- in a way 'sabotaging' a positive outcome when there might have been one. But in Cheri's son's case, he has Crohn's disease. This is completely different from Celiac (which requires food avoidance and in many cases can CAUSE multiple food intolerances). The more I read and the more I learn the more I start to see chronic tics/T.S., Pandas, whatever you want to call it, as a secondary autoimmune condition that affects the nervous system in addition to another disease of the body (I am leaning toward gut issues). So much scientific evidence these days connect the gut to the brain. How the gut is malfunctioning depends on genetics, I suppose. Maybe I'm nuts, but that is what I have come to believe. Food matters. For sure. Grannie was right-- we are what we eat and if what we eat is harming our body then it is toxic and will cause disease. If not, then no bother! Bon appetit! Caryn

I have a thread that I made printable for GFCF diet that might help: http://healthy-family.org/forum/index.php?topic=38.0 I just got back from a local P.O.C.H.A. chapter in my city (Parents of Children Having Allergies) and one of the members brought a thick book that lists all the gluten free commercial products on the American market based on the research and contributions of over 250 members. It costs a mere $8.00. I flipped through it and was impressed. (Mind you it does not address multiple allergies but it is a starting point.) You can call 402-558-1357 or email them at: celiacs (at) csaceliacs.org Hope this helps! --Caryn

In our search for gluten free and corn free meds I discovered that amoxicillin is gluten free but contains corn. We went with amoxil name brand in lieu of the generic and our son was fine. May be totally unrelated, but thought I would throw that out there.

Sure, Kim-- Anything for science LOL Tigger has the HLA-DQB gene. He is subtype 2,2 From Enterolabs:

Hi all, I just wanted to share. We recently did genetic testing for celiac through enterolabs and received our results back. Our son has one gene directly associated with celiac sprue and another gene associated with gluten intolerance. The kicker is that he received one from myself and one from my husband and so one of us has the celiac gene (probably me-- I will soon get myself tested). I wanted to share this because someone out there in cyberspace (maybe just a lurker) will have a child present with tics much like mine did, out of the blue, and if they also have digestive issues themselves, or have a history of it in the family, or ADHD, depression, whatever, this is really a good, viable, first stop option to consider. The test we took cost $149. But there are simple at home tests that you could do by making a skin prick and dropping a few drops of blood onto a strip (much like at home pregnancy tests) for $50. I think they are called biocard. Someone asked me a while back if I would ever go off the gluten and corn free diet or do it indefinitely. After this test I think we are in it for good. Cheers. Caryn

Thanks Faith!!!! I will try that too! C.P.-- These are really, really, good. I was so shocked. I really never expected them to taste good. I have made sugar free cookies with GF flour before and they were gross. I am starting to think that nut flours are ideal and so are dried fruits. We 'tested' them at the Mother's Day Tea at the Church and everyone who tried them could not believe they were flourless and sugar free. I think more people would eat these if they knew: 1. how good they are 2. how good for you they are 3. how EASY they are to make! C.P.-- I baked them on a silicone baking mat, so you may want to grease the pan if you don't have one. I'm thinking a little butter would do just to make sure they don't stick. If you can't/don't have butter, just wet a paper towel with some olive oil and lightly coat the pan. Watch them, too. I think they take longer on silicone than on a metal cookie tray. I'm all out of dates So we will have to wait a few days before making another batch. Had 48, but they went fast at the Tea Party LOL. Lots of sugar cookies with sprinkles left over, though!

C.P. Someone on another list told me that the dates act as a really good binder. The original recipe did not call for dates, so I am thinking it may work out fine without the egg? I may try it and then I'll let you know! I will have to do a little research, but there is a certain amount of water that you add in lieu of the egg. Caryn

I experimented with an SCD recipe and the kids and hubby loved these-- Coconutty Fruit Cookies These are chewy and do not crumble. You can store them well. I did use one egg in the recipe but I think you could probably use an egg replacer if you needed to. (We don't because the Energe has a corn by-product in it.) Caryn

Jenny, Gluten cross-contamination is an issue, because you can transfer minute amounts of gluten and that can affect your daughter's progress if it is done continually. Our son did not test 'celiac' but is very reactive now to the smallest amounts of gluten. I don't see any reason why you cannot use the same toaster and breadmaker as long as you clean the equipment really well and bake or toast on separate occasions as to minimize possible cross-contamination. Mistakes happen and for small children it is hard to explain why they cannot, for instance, share daddy's butter knife. (In our house double dipping is a problem at times, so the jelly jar has bits of bread crumbs in it-- so if you and your husband are eating regular bread, consider these things). We are 100% GF at our house but when we visit the grandparents or friends' houses we make sure there is no 'cross contamination' on eating or serving utensils, in the butter, jelly jar, or sharing of food from another person's plate, even if it is not a gluten food but is touching food with gluten. I hope this helps. I have some basic tips on my blog if you are interested: Getting Started on a Gluten and Corn-free Diet Caryn

Hi All, Ahem, Congratulations, Faith. And you are welcome over at my house any night of the week. No matter what we are serving I am sure your ds and my ds will be fine with it! LOL. Looks like your son has passed the test and is now an official member of the 'nothing to eat' club. Frustrating, isn't it? Sorry for the delayed response. Please forgive. I am taking a bit of a scale-backed holiday on the posting. We've been busy erecting a mansion-sized clubhouse in our backyard. (DH is a tradesman, and now the boys are the envy of the neighborhood.) We 'pimped' it out with a whole bunch of garage-sale finds and recyclables. Kids love it. My arms, back, and legs are killing me though from all the heavy lifting and gardening work. Faith, you are going to have to go green, you know! We have literally rototilled half of our backyard LOL for our organic garden. You all should have known me three years ago. I was a Dorito loving burger eating city girl. Didn't even know how to plant seeds. Now I'm Mrs. Green thumb over here. I used to get my nails done every two, three weeks. Now I say, what's the point? They are black no matter what I do! LOL. As far as IgG reliability. I have heard both sides of the story. I understand why doctors shy away from them. They are not a good indicator of a 'true' anaphlyactic allergy, histamine, etc... and as far as delayed reactions go-- they can be unpredictable if the person is not eating the food for a period of time before the test (otherwise, giving you a false 'negative'). Having said that, just the GFCF diet was not enough for us and I would have NEVER, EVER, in a Million years ever figured out the corn thing without the IgG test. Never. It is just in too many prepared, processed, and even GF foods. I think the Alcat claims an 80% accuracy rate on a double blind test if you go to their website. For me 80% is good. It is enough to get you moving in the right direction. Tigger was off the charts on the corn and it is in everything including toothpaste and the wax spray the put on fresh fruit at the store. It is even dusted on cheeses. I would have been hunting in the dark without a flashlight trying to figure out what makes him tic without that test. Caryn

Kallik, Check out this site: http://www.foodforthebrain.org/ They list a whole host of causes/solutions/triggers, etc.... It is a good overall starting place and can help you weed out and pinpoint stuff for yourselves.

I guess I have developed a pretty 'radical' attitude about corn over the last year. We are 99.9% corn free over here now. The more I have read about corn to try and learn about how to avoid it for Tigger so that he doesn't react (aka tic), the more I have come to determine that it is BAD, BAD, BAD, for everyone, regardless of having an allergy or intolerance. I think I believe this not because of the crop itself but because of the way its seed is developed (right down to the genetically modified varieties), grown, harvested, and how the individual waste products of ethanol manufacturing are used to feed the poor sick cows in the feedlots in Colorado (same cows are fed antibiotics due to chronic illness and suffer from deadly ulcers if fed corn over 120 days.) If you want my unabashed opinion on corn oil vs HFCS I would say avoid both like the plague. http://www.organicconsumers.org/articles/article_11814.cfm Facts about High Fructose Corn Syrup and Refined Sugar If you must include corn in your diet then try to eat organic corn products, non GMO varieties. Try to buy only organic grass fed beef. Honestly. When you read about this stuff it really sheds light on why our country has the lowest food prices in history and highest autoimmune/chronic illness/obesity/heart/cancer problems of all time. Okay, Sorry. I just watched King Corn a couple of weeks ago and the feedlot images are burned into my brain. Just can't get past the visuals.

That is awesome news! We drink it too over here but the kids' teeth don't look stained.... You know what? They use sippy cups with straws! Maybe that is why?

C.P., I have always hated the white spots on my teeth. I have one big one on my left front tooth (almost 1/4 inch squared) and three little flecks on the right front tooth. I was always very self-conscious of them when I was younger, even looked into getting the teeth bonded at one stage. Whitening or cleanings really don't do anything but maybe fade the difference in shades of white vs yellow. The discoloration is always apparent regardless of the products you buy/try, etc.... Once my wedding was over and I became a mom the teeth just weren't so important anymore. Honestly, if your son ever complains or seems self-conscious just tell him that he (and you) are probably the only two people in the world who notice. I remember talking to my husband about it once when we were engaged, and he looked confused. When I pointed them out to him he looked at me like I was nuts for being so self conscious about something that other people would never notice and would never show up in photos. But I know what you mean. From what I understand the 'scars' are created during the development of the tooth, so that would mean that mine were a result of something I was exposed to in my early years, not when they emerged. I honestly have no idea. In my experience nothing has helped to alter them except bleaching my teeth and that only helps to even out the discrepancy. The actual spots themselves never change. It is almost like a loss of pigmentation, like on the skin, only this is on the teeth. I wouldn't have minded if it had effected my entire teeth, LOL and looked a bit uniform. Tell your son to keep smiling and not to worry about them. They are like little freckles in his mouth. Honestly, no one notices. When he is old enough to date the girls will be looking into his eyes, not at his teeth. Well, I hope you don't have to 'join the club,' but if you do I'm in your corner when you need it. On the upside it is a relief of sorts, to finally get at the 'root' cause of a lot of issues. You may see tremendous improvements when the diet is changed. We did, but it was gradual. I'm not sure if that was because I didn't know what I was doing in the beginning with the corn or what. Now that is one club I would hate to see anyone else have to join! Tigger is doing great. We have created quite a foodie. It is hysterical at times. I had a meeting with his teacher a few weeks ago and she laughed and told me that she has to hide her cans of pop and chocolates from his view (she is celiac, btw) because he will tell her that it is 'junk' food and is full of artificial stuff and corn and is very bad for her body. LOL. I told her that he is impossible to take shopping now (he is an early reader and has a great memory when he is told stuff, but still has that beautifully honest 5 year old mind). So innocent..... He will comment when an innocent mother grabs a gogurt at the dairy case, "Doesn't that have artificial colors in it mommy, and too much sugar? Isn't that gogurt bad for you? Isn't plain yogurt better?" Needless to say hubby and I are late night snackers and are always being put in check by little Tigger. Yesterday he came into the office and announced to me, "I think I'm vegan." I almost wet my pants from laughter. I asked him where he had gotten that idea from. He heard something on the food network and he said he knows he doesn't drink milk so he must be vegan. I told him that they eat wheat and corn. He was sooo disappointed. Then he wanted to know 'what am I'? Hm..... We are kind of eating a Paleolithic diet, so I suppose 'Cave' man? Well that sounds too weird for a kid to say. I just told him that he is an 'original' eater. He eats what people ate long before there were fast food restaurants or cows to milk. Seemed to satisfy him for now..... Caryn