Caryn

Michele, Have you ever done a gluten sensitivity test or celiac screen? Your son has some indicators in his symptoms that are very familiar with my Tigger's. (Wheat sensitivity, yeast sensitivity, abnormal stools, sensitivity to light (possible pyroluria), throat clearing after eating.....) Enterolabs does a stool test that is very highly recommended by those with gluten intolerance that are on a GF diet successfully. It is common to test negative on an IgG test for celiac. The best thing to do if your son gets a negative reading is to just try the diet. We did just about all the things you are currently doing. (We never did do antibiotics, I'm not sure if you have/are or not). Our ds had bruxism that just wouldn't go away, even with digestive enzymes. Let me ask you, does ds burp a lot? That is a sign too. Does he have white spots on his finger nails? How is his growth? Is he short for his age? Does he have a pot belly? Does he complain of soreness when you press on his abdomen? Is he hyper after eating certain things? Does he have a history of gastroenteritis or diarrhea? There are several reasons why gluten sensitive enteropathy would cause a lack of vitamin/mineral absorption. It can be present without gastrointestinal issues, but in your case it sounds like your son does have some. I used to give ds 10 of bonnie's vits a day plus enzymes, plus chiro visits, acupuncture at one time too. When we finally went 100% gluten free we saw a dramatic difference in him (it was a slow process that really improved on the third month). After nine months he is stable and I no longer have to do the vits (I will as a precaution on days when he doesn't eat great). His immune system is finally healing and he is digesting terrifically all on his own. (S shaped poops every day). He has not been sick in ages either-- colds, flus, sinus, throat. I just want to throw this out there because I see some similarities. Not everyone whose child suffers from tics is gluten intolerant, but for those of us who are it makes all the difference when you go gluten free. Caryn

Ask her if her teeth hurt/itch/ feel funny. Could be that she is coming down with a cold, is low on zinc, or is having a food allergy reaction. Tigger used to also chew on ice (I believe I read somewhere that that could be attributed to a magnesium deficiency).

My son Tigger was very jaundiced at birth. Colicky too. I was told that I needed to go off of milk products (I was nursing). We do not have 'genetic' TS in our family. My brother had learning disabilities and allergies, but was never 'tested' for food intolerances. Thanks a million for your post. It was very thought provoking and informative. I have read that MSG is an excitotoxin, but never has the information been put so nicely in reference to a child with a tic disorder.

Tigger will be 5 this month and he is so into his diet that he will continually ask if something has gluten or corn in it if he does not know. I always try to make him a complementary treat when his preschool class has party food available. I make and freeze cupcakes, provided an identical looking sugar cookie for his Halloween party that he was able to decorate with the things I provided. I even baked a huge gluten free cake for the school's Christmas party last month, so that he and all the kids ate the same thing together. The teacher is also celiac and she took me aside and said, 'look, they are all eating it and no one is asking 'why does this cake taste so funny?'-- They couldn't even tell the difference. A large part of the transition is your attitude as parent. I do not keep any food in the house that Tigger can't have. I just think it is unfair to him and makes him feel like he is being denied something. This has really helped him to 'keep the faith' when he goes out. He's had a few bad experiences that have also given him insight. He does not want to feel sick, and so he follows my recommendations when we are away from home. This wasn't always the case. He used to sneak stuff behind my back when he got the chance, like a marshmallow at a bonfire party. I told him he could roast it but not eat it because it had corn in it. Well, let me tell you, he popped that thing in his mouth anyway. I handled it by gently telling him that he would probably develop symptoms. I did not punish him at all. I never do. Sure enough, he did develop symptoms. Basically, he learned by himself, that he could trust my advice as a way to keep him healthy and symptom free. I truly believe he wouldn't be so compliant if he did not feel better himself. The biggest hurdle is making sure you are never in a situation where she is hungry and you've got nothing. That is when bad compromises are made and symptoms result. I've BTDT. I carry my cooler bag like a mother of an infant carries a diaper bag-- everywhere. When in doubt you can always find a convenience store that sells bananas and bottled water. We keep Larabars on hand and when we are desperate I let him have a bag of plain potato chips fried in sunflower oil. One last comment on the restaurant issue: I always bring activity books for my boys. This is really helpful in diffusing the whole 'food-focused' experience. He then has something else to focus his energies on and thus does not concern himself with what we are eating and he is not. It keeps the kids in their seats too, and also gives them something to 'talk about' with the adults at the table. Caryn

check out this page: http://gfcf-diet.talkaboutcuringautism.org...g-gfcf-fare.htm It gives a list of restaurants and ordering ideas. IMHO--- I think it is best to bring your own food. Tigger ate at Burger King and at a local burger place near us (Portillos Chain). Twice I ordered seemingly 'safe' fare, and both times he complained of stomach problems afterwards and subsequently puked, only to feel fantastic afterwards. French fries are not safe, especially McDonald's. Some celiacs buy cards for their servers to read that explain the safety requirements and food preparation rules. (Clean grill, pots, utensils, clean hands, food cannot come in contact with gluten containing food (ie: plates touch in transit to table). I have never bought or used a card. Just yesterday we went out to breakfast with friends. I simply packed my own pre-made pancakes, bacon strips, and sausages for Tigger. I had a small cooler bag that looks like a mini diaper bag. In it I keep a mini thermos that holds hot foods, and the rest of my foods. I explained to the hostess that he was 'celiac' (as anything else they wouldn't understand probably) and she was fantastic about it. Everything we needed she provided, willingly. We ordered him fresh squeezed orange juice and the rest of us enjoyed our 'ordered' breakfasts. This is usually how I handle it for right now. He is still young, so the social implications aren't there yet. Perhaps in a few years his reactionary levels will raise and he will be able to tolerate minimal gluten without the symptoms. I just don't know that yet and want to be safe rather than sorry. A friend who has a celiac teenage daughter says her daughter packs food for herself every time she goes out to eat with friends. She usually only orders a drink. (Daughter has multiple allergies.)

Bread from Anna is a nice mix. We buy the yeast free one. It is wheat, gluten, corn, soy, and dairy free. They suggest you use a dairy free milk. You could just use water too. Here is the trick: Right after you take it out of the oven remove it from the pan and wrap it in a wet tea towel until it cools. (I soak and wring out the towel) This will soften the crust and make it much more palatable. We also add a bit of organic brown sucanant (sugar) to the loaf (about 1/4 cup). My hubby likes it to taste more like Irish Brown Bread, which is a bit sweeter. The mix isn't cheap, so we only 'splurge' on it once a week. You will be lucky if it lasts more than two days. It is not a sandwich bread, though. We spread jam on it and gobble it up at breakfast and 'tea' time (after dinner, before bed snack). I will get back to you on a 'from scratch' recipe in the future as I have pressure to make this 'recipe' cheaper and more often. If I can come up with a taste alternative that is not too expensive we will make the switch.

JennyC, Give it some time before you make a full decision. Check your labels, investigate all foods you are feeding her. Keep a log. These are things I would suggest. It is VERY likely you have given her something with casein and or gluten unknowingly. For example, Rice Dream Rice Milk is not all Gluten free--you have to read the labels. I learned this on a celiac forum after having given it to Tigger unknowingly. Some of their milk is labeled gluten free, but their 'original' is not. Their vanilla flavored most likely has corn in it. Are you giving your daughter soy milk? Maybe she is having a reaction; soy is hard to digest as well. Don't give up just yet. I made many mistakes in the beginning just trying to figure this whole thing out. It is quite possible she has another allergy as well that is causing tics. (In our case it is also corn). Keep the diet simple for a few days.... meat, potatoes, vegetables, etc... Be sure to give her cal/mag supps. In the very beginning, before we had him allergy tested with the Alcat, I remembered that whenever I gave Tigger homemade ratatouille he ticked less. Now I smile at the thought because that was the only recipe in my original repertoire that was both gluten and corn free. Are you giving her Darifree? That contains corn. Almond milk? It might be a nut problem.... Email me offlist if you'd like. I can help you iron this out a bit based on my experience. Keep your chin up. We saw a lot of wax ons in the beginning, before we figured out what worked and didn't work. Now we have our basic menu of favorite recipes and our specific brands that work for us. Persevere. You are your daughter's best advocate. I know you can do it. Caryn

just popping back. Not a lot of time here, but check out this link: http://gfkitchen.server101.com/tipstricks.htm

here's a link to an article about the different kinds of blood tests. http://www.celiac.com/articles/32/1/How-ac...ests/Page1.html This is a good site in general for info about ingredients, products, recipes, forums, etc... Caryn

JennyC, You've got a tough job. This is the hardest part. I was sick to my stomach when I realized how much food we had that was made with gluten. I gave my brother about four bags of groceries! MSG contains gluten and is a dangerous excitotoxin even for those that do not need to be gluten free. (Read Dr. Russell Blaylock) Barley malt is also gluten, as is rye. Also, no enriched rice as it is sprayed with gluten to get the vits to stick to the rice. If you already have it you need to soak and wash the rice 8-10 times to get the vits and gluten off for sure. Just buy plain run of the mill rice. Watch your spices. Use only McCormick single ingredient spices, not the 'mixes'. Other brands might be safe, I just know that most rely on McCormick as a good brand. If you can get to a health food store or Whole Foods (possibly some local grocers) you can make a homemade GF all purpose flour for your gravies and soups, etc... It is Betty Hageman's famous recipe from about thirty years ago: 2 cups white rice flour 2/3 cup potato starch 1/3 cup tapioca flour. Works great. I have used it to make cookies and pie over the holidays, and as a thickener in my stews. Soy sauce has gluten. We buy a special brand: SanJ (only one of their soy sauces is gluten free, it will say 'wheat free' on the bottle). Basically, most of your seasonings and sauces are contaminated, your chips, dips, etc.... Don't worry, there are loads of alternative foods and of course you can do just about anything from scratch instead for cheaper than the alternatives but that does take time. Caryn P.S. don't buy lunch meat at the deli (they don't clean machines between customers and gluten contamination is very likely). We eventually bought our own meat/bread slicer and are very happy with it.) I buy my luncheon meats at costco or whole foods now in the original packaging and bulk slice/freeze portions with great success. It is actually saving us money!! Clean out that toaster pretty good, too. Use a vaccum if you have one. Some throw out the toaster. I think that's unnecessary. link to unsafe ingredients: http://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Many parents say that a RAST test does not find food intolerances, or delayed reaction allergies. I'm not sure what kind of test Isa took, but if it was a skin prick test it would not measure delayed reactions. We have never done a RAST test for Tigger, however I did do one years ago myself and found it very uncomfortable. The RAST test I took never found a wheat or gluten 'allergy'-- ;>) Tigger took the ALCAT test, which measures the white blood cells. They claim to have an 80% accuracy rate. The ALCAT found gluten intolerance but did not find Celiac. We went gluten free after the results and later learned that it would be impossible to get a positive celiac dx once the gluten intolerant/possible celiac stops eating the gluten. (Many celiac blood tests require daily ingestion for at least 30 days prior to testing. I don't know any gluten intolerant person on a gluten free diet that would be willing to do that!!!! ) I have heard of a company called Enterolabs that does genetic screening and stool tests which are much more highly sensitive than the typical blood test. We plan to do the genetic testing for our family next month. IMHO I think it is better to be safe than sorry, at least for us. Our youngest has been thriving on the GF diet (he is 18 months old) and suffered from eczema and bloody bums before the switch So for us, right now we cannot definitively say Tigger is or isn't celiac. All I know is that the gluten free, corn free diet has definitely made all the difference. Caryn

JennyC, Yes, new studies have come out that point to neuropathy and gluten intolerance/celiac disease. I wrote an article summarizing the ones I was able to get full text info on for free. (Most medical studies require a fee, sometimes $40-50 an article.) Here is an excerpt from one study that I quoted: Zelnik et al concluded that, “the spectrum of neurologic disorders in patients with celiac’s disease is wider than previously appreciated and includes, in addition to previously known entities such as cerebellar ataxia, epilepsy, or neuromuscular diseases, milder and more common problems such as migraine headache and learning disabilities, including ADHD” (1675). Excerpts taken from: “Range of Neurologic Disorders in Patients with Celiac Disease” Pediatrics, Volume 113, June 2004. If you haven't heard about Doris Rapp, she has a couple of interesting books out that talk about cerebral allergies. Is This Your Child?, I believe, is the title of her first book. Check to see if your library carries it or any of her other books. It was in her first book that she wrote about a child with a corn allergy, his reactions to it, and how dramatic a change he made when he got off the corn. I initially thought it was far-fetched, but when I finally took my Tigger off of the corn I saw a dramatic reduction in his off the wall behaviors. It was like a light bulb went on in his head finally and I no longer had to repeat myself to him sixteen million times only to get him to forget half of what I said-- he stopped having those annoying 'be-bop' sessions where he would make goofy weird noises almost all day long and just literally bounce off the walls, knocking my cushions to the floor and tearing apart the house for no reason--throwing his toys instead of playing with them. He was like a new puppy completely unbroken, running around my house destroying it. I kid you not. In her book Doris included a picture of the corn allergic boy's handwriting and artwork both on corn and corn-free. There was a dramatic difference. I see the very same thing with my Tigger. I KNOW when we have had an infraction based entirely on his handwriting. It is like there is a complete inability to concentrate, attend to task. He cannot stay in the lines, write legible words, and drawing scenes, forget about it! Off corn he will spend 30 minutes drawing beautiful scenes: a house with a yard, several windows and doors, trees, kids playing. He uses multiple colors and stays in the lines when he fills his drawings. On corn-- I will get a sloppy circle with stick arms and legs, circle feet, and major scribbles, often covering what he originally drew. He always colors with just one crayon while on a corn 'high'. We had such an episode last weekend. My husband and I went to a wedding and before we left he asked to have some muenster cheese. I should have said no, because I didn't know if the product was corn free. Well, he pigged out on it and was fine for the next hour and a half before he went to bed (according to the sitter). The next morning it was obvious he had eaten corn and we literally had to wait until today (four days) before he told me that he finally feels like himself again. (It is common for major manufacturers to sprinkle cornstarch on their block cheeses before packaging so that their products don't stick to the plastic.) I see more irritability and physical sickness when it comes to the gluten, spaciness, and 'naughty' behavior; but that doesn't mean that gluten would not cause hyperactivity in another gluten intolerant child. Tigger initially tested positive for pyroluria; I believe this was due to the high gluten diet he was originally on. When a celiac/gluten intolerant person eats a lot of gluten it can act as a laxative and just wash the nutrients out of the body before they can be properly absorbed. This is why they are usually always vitamin deficient, especially in Bs, are usually anemic, and lack zinc. (White spots on the fingernails is a sign). Over a long period of time these deficiencies can cause a whole host of problems including depression. Also, when you feed your child fortified foods or vitamins that include gluten you can be sure it is not properly absorbed. This is why I believe that my son's gluten intolerance must have lead to the onset of his tic disorder. He was deficient in so many things even though I was providing chewable vitamins to him almost daily and providing enriched whole wheat breads. The research shows ADHD to be a possible side effect of a high gluten diet for a gluten intolerant individual. But there is not enough out there to give a definite claim that tics can in fact be a direct result of a high gluten diet by a gluten intolerant/celiac child. I found one reference to date. My second reference is my son. Call it a hunch, but I do think that for a small minority of us there is a connection. Just as MSG is considered an excitotoxin, so is gluten in the genetically susceptible. What I will say is that my ds has recovered tremendously on his new diet and he has NO interest in knowingly eating anything with gluten or corn, and he is only five years old next month. So he must feel a strong difference himself. We have a really good handle on the gluten free diet as the labeling is so good and companies are forthright in their packaging. Corn is another story as it is not officially recognized as an allergen in the U.S. and most companies do not disclose as they are not required by law. It's a shame, as the lack of labeling makes my job as detective a full time one! Hope this helps. The rest of my article is at: http://healthy-family.org/caryn/289 Caryn

JennyC, We saw results after the first two weeks. It was a gradual improvement that really required regular vitamin doses and probiotics to keep the tics down in the beginning. Now that he has been on the strict GF and MF diet for nine months we can skip the vits and not see a surge in tics (although we still do supplement, especially over the holidays when he has eaten his share of allergy friendly sweets. Probiotics are necessary for good gut flora. We use Threelac. It is expensive but worth it in my opinion. We do not do the chewables--too much stuff in them (corn for one). I have a blog that has quite a few recipes on it, some that are gluten and casein free as I am supposed to keep the dairy at a minimum so as not to cause a dairy allergy to develop. Many of my recipes are interchangeable as far as making them dairy free. I have learned quite a bit as time has rolled along and have gone back and updated all recipes with specific info as needed. Of course they are all free. I get recipes from other parents on different allergy forums I belong to and will post their ideas from time to time. http://healthy-family.org I forgot to mention that tomatoes, apples, grapes, pineapples, and oranges are high in salicylates. If your daughter seems to be 'bouncing off the walls' after eating them she could be sensitive. They tend to cause hyperactivity in chemically sensitive kids. My tigger goes coo coo when he overindulges. I have to watch he doesn't get more than one serving in a single day. As a rule, cooked is better than fresh (tomato sauce over fresh sliced tomato, canned pineapples over fresh (although we don't do canned--corn issue). Also, green grapes and green apples have less salicylates than the red versions. I want to put this out there in case you want to experiment a little with it. I gave partial info the last time I posted. Check out: http://groups.yahoo.com/group/FOODALLERGYKITCHEN/ It is one of my favorite forums. There are over 1000 members. I ask a question and within minutes I usually get an email response. Everyone there is really helpful and there are so many with some cool, creative recipes. Caryn P.S. The longer a gluten intolerant person goes without gluten the more the body heals. One way to test gluten intolerance on your own is to abstain (really be sure the person is not getting ANY gluten) for at least a week, preferably two, and then reintroduce the gluten with gusto. You should see a marked spike in symptoms. Once the healing begins the body becomes more markedly sensitive to gluten and will react more strongly against it to rid itself of the 'toxin'. After being gluten free for six months my little guy actually puked after getting cross-contaminated food at a fast food restaurant. Once his stomach was empty he felt fine. I panicked, but senior members on the celiac forum reassured me that this was normal and that it was a 'good' reaction, as he recovered much more quickly than he would have if it had passed completely through his system. Now this doesn't mean that he will puke every time he eats gluten or corn, but it is a possibility that it could happen again. I am encouraged that the longer we eat this way the stronger his immune system will get. He is doing fantastic since we changed our diet in our house. We have not had one trip to the doc for antibiotics. He has escaped the usual fall cold and flu season with ease. (I got sick this fall as did his two little brothers, but he did not.) He used to be the sickest of the bunch! I will add my disclaimer again, in case anyone is reading this post for the first time and not following my previous posts: Gluten Intolerance is a genetic condition in which a person does not produce an enzyme necessary to break down the gluten protein found in wheat, barley, and rye. Not everyone is gluten intolerant.

I'm not sure if I can help you sort out what you should best do for your daughter, but I wonder if Rescue remedy has an ingredient that acted as a catalyst? Is this the first time you gave her this? I checked the ingredients online and they listed several flower varieties and alcohol: The original Bach Rescue Remedy * Impatiens: For those who act and think quickly, and have no patience for what they see as the slowness of others. They often prefer to work alone. Teaches empathy and understanding of and patience with others. We've found it very fast-acting in alieviating an impatient attitude and lowering stress. * Star of Bethlehem: For trauma and shock, whether experienced recently or in the past. Teaches the ability to recover from traumas and to integrate them into the present life. * Cherry Plum: For those who fear losing control of their thoughts and actions and doing things they know are bad for them or which they consider wrong. Teaches trust in one's spontaneous wisdom and the courage to follow one's path. * Rock Rose: For situations in which one experiences panic or terror. * Clematis: For those who find their lives unhappy and withdraw into fantasy worlds. They are ungrounded and indifferent to the details of everyday life. Teaches one to establish a bridge between the physical world and the world of ideas; may foster great creativity. Is also used to bring clarity and alertness to the present moment. Perhaps the alcohol is a problem? Have you tried to contact their customer service to find out all their ingredients and how they were derived? How it was distilled, etc... http://www.bachflower.com/index.html I will share with you a little of my experience last spring about something completely different. It was Easter weekend and we were celebrating with family. Tigger was given four coconut macaroons and within 10 minutes he began a head shaking, nodding tic that was multi-stepped and methodical in nature. He continued to do this for two days and had difficulty sleeping as a result. I thought it was the coconut, but three weeks later we discovered that he had a severe corn allergy (through the ALCAT, a delayed food intolerance test that measures white blood cells). Those cookies had maltodextrin, a sweetener made by processed corn. Alcohol is also generally made from corn, but not always. It is my opinion that when Tigger's immune system is low his antibody levels rise against wheat and corn. If he eats a severe allergen I will see a flare up, but since we changed his diet we have never seen anything as severe. Now, my son Tigger has never had such a severe reaction as you have described here. I certainly think you are right to take your daughter to see a specialist. I just wanted to share my little bit of experience so that you can mull it over and possibly get something out of it to go on.

JennyC, I agree with Q'smom--A feingold diet is a good way to start. just look at http://www.feingold.org/ There is a membership fee and with it you get several books and an updated list of safe products that are preservative and additive free. If you can't afford to join, just start by getting rid of petroleum based products when you cook (margarines and cooking sprays like Pam) and trying to give your daughter whole foods, home cooked meals from scratch. Keep it simple and repeat your recipes until you get comfortable. Most cereals contain BHT and BHA and must be avoided. (Kelloggs). Many families get results without going gluten and casein free. Start there if you feel gluten is not a problem, otherwise you will overwhelm yourself. If you are still worried about gluten then you should be careful with your labels, first looking for products listed as gluten free or by becoming familiar with ingredient labels. Basically you buy products with only ingredients listed that you can pronounce (LOL) and know what they are. Look for organic products when affordable and available. (Costco is great). Also, avoid artificial sugars and sugars in general. Keep it simple. Put all natural unsweetened applesauce in your all natural oatmeal and add loads of cinnamon. Buy whole chickens and whole turkeys and utilize all parts, saving the drippings to make your own gravies from scratch. Buy only what you can eat in four days. I found I had less spoilage when I shopped twice a week. Get a cheap min prep food processor if you don't already have one (15 bucks at walmart) and use it to make apple sauce, pear sauce, chicken salad, etc... Buy in bulk when there are great sales. If you don't already, get a deep freezer. (Ask your relatives, you may find one that doesn't utilize theirs). Feingold claims that many kids are sensitive to not only petroleum based products and preservatives like sodium benzoate, food colors like red dye #40 and yellow dye #5 (tartrazine), but also can be sensitive to fruits high in salicylates like red grapes, oranges, and apples. First omit the chemicals and serve only whole foods cooked fresh at home, then worry about the fruits. If you still have concerns worry about the gluten. We saw very similar behaviors with Tigger. He got better and better with each step we took, and finally when we got rid of gluten we saw tremendous results. Gluten free does not have to mean buying all kinds of special bread mixes and alternative cookies, etc.... When we first started I kept the diet simple and made a lot of crockpot dishes in bulk, freezing the leftovers and re-serving them. (Beef stews, chicken soups, spaghetties, etc....) Eventually I did purchase a few brands that I liked and have gotten comfortable with our routine now. GF can be expensive if you are not frugal. I found the mixes to be more economical than going from scratch. We don't use them as staples, and that is key. I shop around for stores with the best prices. Above all else, good vitamin supplements are well worth the investment, and can help with symptoms and mood, especially when allergies/intolerances often strip the body of vital nutrients from the food, or the child lacks in absorption abilities do to low enzyme production or poor diet. Nordic Naturals fish oil, non-synthetic vitamins (from health food store or whole foods) high in B's, especially B6, adequate vit C, E, and zinc are all beneficial for most of these kids. Magnesium is also important and usually lacking in multi vits. Many here use magnesium taurate. You probably would want to consult your doctor about doses as your daughter is young. Hope this helps, Caryn P.S. I just wanted to add that we had a delayed food intolerance test done called the Alcat. It showed delayed food sensitivities and not immediate allergies such as a rast test. It measures the white blood cells. I found it to be very accurate and am glad we did it.

JennyC, Gluten intolerance is an hereditary condition in which the body does not produce an enzyme necessary to break down the gluten protein (the gluey stuff that makes breads and cakes so chewy and rubbery) found in many common grasses. It is more prevalent than earlier thought, compromising almost 10% of the total population according to Dr. Rodney Ford, a gastroenterologist from NZ. In the most extreme cases a condition called celiac's disease will develop. This disease was originally thought to be a disease of the gut but many researchers have recently discovered that there is a very solid gut-brain connection with gluten intolerance and that quite often the sufferer will have no gastrointestinal symptoms but will develop strange neurological problems (silent celiac). The basic premise is that the gluten wears down the lining of the small intestine and causes small holes to develop. Undigested proteins then leach into the bloodstream and begin to affect the brain. I find it curious that the same part of the brain that affects children with autism is the part that causes tics. Many parents of children suffering from autism have found success going gluten and casein free. Some have not. If you go to Celiac.com you will find several articles that summarize celiac studies. Extreme vitamin/mineral deficiencies are also common and result in the development of psychological conditions like schizophrenia (studies through pheiffer center have shown that 33% of schizophrenia sufferers are undiagnosed celiacs.) Pyroluria is another condition that can be corrected over time with a strict gf diet and supps (for gluten intolerance sufferers). Dr. Ford also claims that many gluten intolerance sufferers also acquire a sensitivity to milk (also a colloid, which means it has a glue-like constitution) but a strict gf diet will eliminate the milk and other allergies over an extended period--- years in most cases. Many celiac sufferers go undiagnosed for years and years. Average age of dx is 40s. Many claim to have suffered neuro dysfunctions for years. (tingling in hands and feet, ataxia is a BIG one that has proved to be caused by gluten intolerance/celiac in medical studies.)Many (I won't say 'all') have claimed to be cured by going gf. It is most common among the Irish, especially those that hail from the west coast of Ireland. Although a person does not exhibit symptoms while eating low doses of gluten that does not mean that they are able to digest it properly. The best solution is to go completely gluten free for anyone with gluten intolerance issues, as it will always cause damage when ingested if you are genetically susceptible. If you are not gluten intolerant than there is no issue with gluten and you can eat it with gusto. And I am jealous of you! LOL If you read some of my earlier posts you will see that I muse a bit about candida as I believe it plays a nasty role in this whole scenario. Candida is a fungus that secretes a toxic waste product in the body and is very hard to eliminate. It feeds off of yeasty breads and sugar. If a person is also gluten intolerant then the leaky gut can give the candida a good clear 'highway' to the brain, according to some. Many parents on this forum give probiotics. We use Threelac. I believe that in our case candida and gluten were a major factor in our son's initial symptoms. (Heavy antibiotic use leads to the development of candida overgrowth and antibiotics are often prescribed more regularly for kids with gluten intolerance and on high gluten diets) They are susceptible to infections due to the inability to kick common colds, etc... My Tigger had many ear infections, croup bouts, and episodes when he had diarrhea and/or vomiting. Antibiotics strip the body of both good and bad bacteria. Good bacteria is necessary to fight candida overgrowth. Without it candida begins to spread. We all have candida in our guts. Overuse of antibiotics without probiotics can cause major gut problems over time. A sure sign gluten/candida is a factor is if you have a toddler who has frequent white, frothy and strong/extremely smelly diarrhea episodes (our Tigger would have them once every three to four weeks, usually coinciding a big weekend of celebrating with family). I call holidays the season of 'gluten merriment'. Distended abdomen is also a sign of intolerance, so can a very picky eater who often gags while eating foods with gluten (I am talking toddler here). I realize that this post digresses from the original topic. My apologies. Hope this clarifies. Caryn P.S. I read in a recent study that antibody levels for gluten can vary among children, going up and down regardless of whether or not they are gluten free. This is very interesting and really proves the comment by ad_ccl: what causes the antibody levels to rise and fall is a mystery, but it is possible that minimal amounts would cause no symptoms in some cases where the child's immune system is strengthened. I would want to add a disclaimer, however, that if you are gluten intolerant then your body cannot tolerate it even if you are apparently showing no symptoms. Increased ingestion will cause symptoms to resurface. But I agree with her that occasional ingestion of gluten in the child that is NOT CELIAC should not cause major distress. Celiacs, on the other hand can be sick and highly symptomatic for three or four days after a minute amount of gluten. I would not recommend regular gluten ingestion if you have a child that you suspect to be gluten intolerant. It is kind of like giving your three year old matches and saying, "now we don't want to start a fire." As for me and my house--- We're Irish, and so we are definitely staying gluten free until we get genetic testing. Our Tigger tested gluten intolerant and with a wheat allergy. He did not test 'celiac'. I have a rule about wheat, corn and gluten. I never knowingly give it to him or let him have it at someone else's house. He knows this. In the beginning he would sneak the food. I never punished him for it. I only explained that it might make him tick, have diarrhea, feel sick, puke, etc... Now he doesn't touch the stuff because he knows that it makes him sick. He has no interest. He just turned four when we started with the diet. He will be five next month. I have learned a lot since the beginning of this whole process and what amazes me the most is how darn awesome a kid he is through it all.

Okay, I posted this in my long reply to your other post, but I will cross post my answer here for anyone popping in. 1. Spectrum Palm Oil (solid at room temperature) sold at Whole Foods and many health food stores. 2. Ghee (a solid at room temperature) Ghee is clarified butter and contains no casein. Found at whole foods.

JennC, I noticed you mentioned still considering gluten as a problem. Many celiac sufferers claim it is not uncommon to get false readings on tests or to get negatives one year and be positive the next. Enterolabs does genetic testing and many on the celiac forums that I belong to claim it is highly reliable for them and their families even though many mainstream doctors choose not to use it as a reason to go gluten free as they feel that a gluten free diet is too restricting. (Enterolabs is a more sensitive screen and results in more positives-- they use a stool sample). Celiac forum members will tell you that being gluten free is liberating and once they go gluten free and feel so much better they really don't care about the 'celiac dx' anymore. Many people I converse with on celiac forums never got satisfaction when trying to get the dx. They just finally decided to do it after years of weird symptoms and feeling crummy all the time. In our house we are not completely casein free although we are definitely on a 'reduced' intake. We do a no corn, no gluten diet. I will notice a slight increase in tics when Tigger eats too much cheese (which he really likes) so I keep it to a minimum. When I did further research on the cheese/casein thing I learned that block cheeses are almost always sprinkled with corn starch prior to packaging in order to keep the cheese from sticking to the plastic wrap, so you see the causes for symptoms after dairy consumption can be multifaceted. IMHO I think that corn is a big instigator and unfortunately is more widespread in our modern diet than gluten. There is not much research on it either and it is not considered one of the big eight allergies. Corn is in most dairy products: cottage cheese, sour cream, dip mixes, yogurts, etc.... I want to throw this out there to help clarify for anyone who seems to get symptoms even after removing dairy, or for those who get symptoms from certain kinds of dairy more than others. Our dairy free alternatives: Water and oil in baking (or applesauce-- works great with pancakes) Read up on your oils, not all are created equal. Rice Milk (we make sure ours is gluten free, some are not-- we also get plain as vanilla has corn alcohol usually) Almond milk (same on vanilla) We use spectrum palm oil in lieu of yucky margarine. It is solid at room temperature and works well in baking. (although you really need to flavor your crusts as they don't taste as good without that nice buttery flavor.) "Ghee (Clarified Butter) There is no casein in it. It is a great substance for greasing your pans. If you can afford a Vitamixer you can make your own almond milk. It is loads cheaper in the long run. It is best to use slivered almonds rather than whole ones but both work. Almond milk costs a fortune compared to cow's milk. Goat's milk is very expensive too where we live. Our Tigger used to drink it as a toddler when the doctor's told us they thought his problem was milk allergy. Turned out it was always gluten and never milk. Anyway, as he got older he really started to dislike the goat milk. It has a very strong odor and tastes much different than regular milk. Sheep cheese is much milder than goat cheese, if you can find it. You may want to inquire at European or middle eastern grocers. You may want to use lots of spices to help with flavor in your baking, and make sure that adequate fats and calcium are in the diet and that your daughter gets at least 15 minutes in the sun every day for vitamin D. Oh, one last thing-- Some people claim that they tolerate organic milk over regular and some claim that they can handle cultured dairy products over uncultured (if it is a corn problem then cultured butters are quite possibly a problem as they many times have corn derivatives). Some claim that non-hydrogenated milk is the only way to go. There are many opinions on the milk issue. Just thought I would throw this out there. I really don't have any strong opinions on these issues but I did do quite a bit of research on milk before we went gluten and corn free as I thought milk was the problem. Hope this helps. Caryn http://healthy-family.org

Matt, First of all, congrats on all your success. I am very happy for you that you have found some things that are working well. I just want to jot down two thoughts that occurred to me when I read your post. 1. I want to quickly mention that the rast testing has typically not been as useful for some of us as a white blood cell delayed intolerance test such as the Alcat. Just keep this in the back of your mind if you feel that food seems to be a trigger after all. 2. We believe that gluten intolerance played a big role in our son's ticcing and that a Gluten free diet has really helped his recovery. I want to throw this out there as you mentioned taking the breads out of his diet. Being gluten free takes it to a higher level as gluten is hidden in many foods as fillers. (I did some research and learned that gluten intolerance can cause neurological damage.) 3. Screen sensitivity may be due to pyroluria (but not necessarily). In our case our son tested positive for pyroluria and with vitamin treatment and gluten free diet his symptoms lessened to the point that light sensitivity is not an issue anymore. This is not the 'cure' for every case. Some parents have used other methods and not all kids with tics suffer from pyroluria (a specific vitamin/mineral deficiency that requires zinc and B6 supps.) In our case we believe that the zinc/B6 deficiency was directly related to the high amounts of gluten in our son's diet prior to and during the initial waxing period of his symptoms. Dr. Woody McGinnis, who I have been in contact with, has been writing a book on mauve factor (pyroluria) and has learned that there is a very strong gut/brain connection. Any person suffering from pyroluria needs to look at diet, specifically gluten intolerance, but not limited to just that. 4. For some kids excitement alone can cause tics. In our case it appears to be diet related. With the gluten free diet and treatment for pyroluria we have not seen any screen sensitivity. He had a gluten free holiday and did not suffer any increase in tics even though he had received several very 'highly stimulating' gifts and spent a good deal of time playing a new electronic game. Hope this gives you something to grasp at. You may or may not find it useful. Caryn http://healthy-family.org P.S. I second Chemar's comment on the neuro. We did not get any satisfaction there. Ours said diet does not play a role and that tics are transient and will go away on their own if we ignored them. If not, we were told to come back in six months for a prescription. Thanks, but no thanks. We got so much more help for our son right here on latitudes and also from a few very friendly celiac forums and helpful docs we met through Pfeiffer Center and via the internet.

Maryann, Vent away! I had a very similar experience with our neuro. She only offered to put my son on meds and when I asked about diet she said that she did not believe it caused the tics and that my dh and I could do whatever we liked, it couldn't hurt his overall health but it wouldn't affect his ticcing. We left the appointment with complete disappointment and disillusionment and about $325 out of pocket for her 20 minute observation and dx. It didn't help that when we learned from ACN about allergy testing options etc... that our pediatrician who referred us to that very same neuro refused to write a script for the testing that so many here suggested. He said blankly that he did not believe in that kind of testing and that we just needed to accept the situation. Well that testing that he claimed was a 'waste of money' has proven to be the key fixture in our son's consistent recovery process. I think a lot of these mainstream doctors think we TS/tic parents are a bit 'hyper conscious'. I really don't think they have the research and background in holistic treatment to really give them a 'full picture'-- and with bustling practices and growing families of their own, many of these docs just don't have the time to put in to do any extensive research on our behalf. What they know about tics/TS was probably covered in a semester of med school, and for some they may have never seen a case in their careers (as my original ped finally admitted to us at our last visit when he insisted we sign a release after informing him that we do not wish to vaccinate any more). The first pediatrician I finally cliqued with has a son dx'd with autism. For him it was personal, and so he made it his mission to know all there is to know about ASD. He, of course, was more open minded and knowledgeable about vax's, diet, vits, etc... You know, if you have gotten results then you have all the info you need. You don't need approval from the mainstream docs. I just don't think you'll get it. That is what I love about latitudes. We are all in the same boat here and we all can commiserate, console, coach, and celebrate together. This forum has been a real blessing for our family. It has helped us to heal our son better than any one physician could. I'm glad you found at least one doc that is on the same page. Your daughter sounds like she is doing great. You know in your heart that she doesn't need meds. My ds does great on his diet and his symptoms are minimal-- as you stated your daughter's are. I don't consciously let him 'cheat' under my supervision, but if he does inadvertently or blatantly eat something I don't punish him either (he's nearly 5), I just explain to him that he will probably see some symptoms. When he does get them afterwards he then makes the connection. Now he is very diligent with his diet. He always asks before he eats. Don't worry too much about dd. With maturity it will all come together. Being thirteen and all she probably is just bucking for a little independence. She wouldn't be so compliant if she felt herself that it wasn't working. Yeah, she probably does cheat when you are not 'watching' but I bet her level of consciousness about it is enough to 'keep her in check'. I just wanted to post a note of encouragement and let you know that I totally know what you mean and how you feel. We are in the same boat here, only our ds hasn't reached his teens yet! Caryn

Newtothis, - Craves sugary foods - Seems like he feels constantly hungry - super tired by his mid-day - frequent melt downs and frustration - eyes roll more when he is tired - when he is sleeping, it does not seem as if his eyes are rolling - his eyes are not all red in the morning like they get at night, puffy, blood shot and just tired looking - he also clicks his teeth while sleeping It sounds like he could have a food intolerance issue. What does he eat a lot of? Our intolerant foods are the ones we generally crave. My son used to crave wheat products: mac and cheese, chicken nuggets, bread, cookies, crackers, noodles. He would eat these things and nothing else. He also had a lot of digestive issues (diarrhea, vomiting episodes, stomach pains that would wax and wane over those first few years). Our doc thought it was a milk allergy and so we took him off dairy from the time I weaned him until he was properly tested by Alcat and we found he had no milk allergy at all, but a wheat, corn, and gluten-intolerance issue. I am currently reading at length about candida and have read and re-read Claire's thread about food elimination diets. You may want to look into the symptoms here and see if they fit your situation. http://candidapage.com/cccomp.shtml We have found great success with a gluten-free candida cleanse diet. One type diet that is very popular is the SCD diet (Specific Carbohydrate diet.) We are not 'officially' using it exclusively, but I have been cooking up some of their free online recipe ideas. http://www.scdiet.org/2recipes/default.html I am still learning as I go along. Vitamins are very essential for tics, and I think so are the probiotics. We found great success with the threelac http://www.ghtdiscountclub.com/threelac_main.aspx?ID=2527. Caryn

Hi All, I will quickly add a note and then post later when I have more time. I suspect the candida because I stopped the Threelac when we ran out and replaced it with a different brand that had different strains (mainly acidophilus). I posted my concerns to Dr. Rodney Ford via email and he responded that it is best to change brands on the probiotics to make sure that all stains are fought against so as to avoid overgrowth of one strain that is not directly affected by certain probiotics. I believe the Threelac was exactly the right probiotic for Tigger and when I stopped it and switched brands I think we stopped fighting those strains. We were also using a probiotic in chewable form and when I read the label I noticed that it was made with corn I am very good about reading labels, I don't know what was up with that. But why I think candida is an issue is because Tigger got a flare up around his anus recently. I treated it with a salve I bought through wiseways herbals, black walnut tea tree salve, and this helped to clear it up. (He still has it, but it is much better today.) After I start the Threelac again I will let you all know the progress. I just got the shipment this afternoon. Basically I've slowly been adding sweets since just before Halloween and even though I am doing the gluten free I have been baking bread with yeast in it. I have since stopped that because I read that if your child tests intolerant to baker's yeast/brewers yeast on an IgG test than this means there is quite probably an overgrowth issue. (Tigger did on the Alcat). The symptoms of candida syndrome are very similar to the symptoms of gluten syndrome. I went gluten free with Tigger (as did the rest of us here) and have felt much better. I noticed myself that when I eat the gluten free breads with yeast I have similar symptoms as when I ate gluten. I think in our case we have problems with both. I used to think I was allergic to chocolate because I would get sluggish and a bad headache afterwards, but when I eat gluten-free chocolate nothing happens. Q's mom, One thing about allergy testing--- I just want to quickly mention that if the test does not measure delayed intolerances (such as the Alcat) than problematic foods will not show up if they do not cause an immediate allergic reaction. Caryn

Hi Mary! I just want to quickly comment-- I re-read the thread that Claire started and have also been researching a bit in regards to the GFCF and Specific Carbohydrate diets for kids with autism. What I find is a commonality-- certain foods cannot be reintroduced, (like the milk and the gluten) for kids who have shown marked improvements on the GFCF diets, because eventually over time the child suffers a 'rebound effect' that may not show its ugly head until months after reintroduction. I read one mother's testimony that her child regressed after a few months of eating a regular diet and did not recover to the original level of success for over a year and a half. I have read that candida can play a very strong role in the development of multiple allergies, as can gluten intolerance. I have noticed myself with Tigger that since I reintroduced sweets in the form of Gluten free goodies his symptoms have snuck back in again (just yesterday I noticed a candida rash on his bum). I am going back to the basics again as I believe I erred in stopping the candida cleanse too early in order to give him a more 'social' diet. (four months of hard work). We are between a rock and a hard place, aren't we? Now it is important for me to mention that not all kids with autism benefit from the GFCF diet, just as it is true that not all kids with TS have multiple food allergies. (I use Autism as an example because it seems to be more widely researched than elimination diets for TS. At least there is something to go on other than parent testimony. I do agree with you that the crux of the problem (at least in our case) is the leaky gut. Gluten intolerance plays a huge role in that, and the symptoms of G.I. are nearly identical to that of candida syndrome. Both are toxic to the system. I'm not sure I have any answers for you, Mary. I just want you to know that I feel like we are in the same boat here. Caryn

Faith, I bumped Claire's food elimination survey thread as I found it very enlightening. If you have the time read through everyone's posts. There were a lot of similarities there among participants. As you know we've had great success with the diet. I have noticed a recent increase in symptoms and I believe it is candida related. (We did the candida diet initially and I slowly phased it out. We originally used Threelac but then switched to a regular probiotic and sometimes even just cultured foods.) I also slowly began to allow gluten free sweets and BOOM, the symptoms started to resurface. I re-read Claire's thread and have done further research on Candida. I suffer from it myself and I have a theory that I may have passed it on to Tigger while pregnant. I wonder if that, coupled with his gluten intolerance, has been the main two contributers to the onset of his symptoms. I have since gone back to the candida diet (no sugars and yeasty GF breads) but will allow for sweets over the holidays as Tigger is only four and I don't want to totally ruin his Christmas. He has symptoms of a candida flare up at the moment (red around the anus) that I am currently treating topically. I have also re-ordered the Threelac. I think I was remiss to stop the Threelac after only four months. I think it is an excellent product and will go back to it for at least a year this time, perhaps indefinitely. I don't believe the other probiotics have the same 'kill' potential as Threelac, and I also think that I erred in thinking we had kicked candida so quickly the first time. The trick is to keep it under control and not feed it and thus create 'rebound' effects. We saw almost immediate results after initially starting the candida diet and Threelac. When we also began the gluten free aspect we saw NO ticcing at all. It is so hard to do the diet, and there are times when we have slip-ups, but I really think it is worth it. I am starting to see a direct connection to candida here and will let you know how things go as we backtrack again. Caryn

Bump for Faith.