Caryn

My son has a corn allergy and can't take vit. C at all-- buffered-- doesn't matter. I just feed him foods naturally high in C.

We use Trader Joe's rice milk. I checked with Rice Dream and did scads of research. They never changed their formulation. Their labeling has to do with government regulations. The stuff in Canada will not say 'gluten free' on it but the stuff in the states will. States are more lax on regulating gluten then Europe and I believe Canada is closer in line w/ European standards. The barley is still in there in the U.S. version. Just the label is different. If you are using it sparingly it is probably fine. The goal is to keep the gluten down to a minute amount (complete removal is impossible due to a multitude of reasons). We use it and also goat milk. If you are dealing with a milk protein allergy the goat milk probably will not work for you. Goat milk is closer to human milk than cow milk and easier to digest but folks with milk allergies cannot substitute according to many folks on the food allergy lists I belong to. If you are removing dairy completely you do need to watch dietary levels of tryptophan as milk is a major source of tryptophan. We supplemented with it when Tigger was dairy free for 6 months. Tryptophan is helpful for tics as well. Now he gets dairy in moderation. Removing milk is common for folks with 'leaky gut syndrome' and many can reintroduce after the gut has healed. Milk substitutes are: Rice milk Coconut Milk (I get the canned coconut milk from Trader Joe's-- no artificials) Soy Milk (we don't use-- too much bad info in regards to hormonal issues)-- I think in moderation it might be okay but I would be leery of making it a daily staple. Water and an extra egg (in baking).

Applesauce-- sure, just use pear sauce. (Heat a pear and mash it). The pectin in the apples helps to bind the cake. Evaporated cane juice is actually unrefined table sugar. It is a creamy color because it is not bleached. We actually don't use it anymore. We use the honey instead. Baking soda is necessary to get it to rise. Otherwise it will be flat as a pancake and chewy. Is there a reason why you are avoiding baking soda? The recipe also calls for baking powder.

I have a from scratch carrot cake recipe that everyone loves. It tastes pretty close to the real thing. http://healthy-family.org/caryn/442 I make it with eggs but others have made it without eggs and said it tasted great. I now make it with Beth's Gluten Free Pantry baking mix (add about 2 1/2 cups of flour-- almost the whole box. I also make it with honey in lieu of the white sugar (1/2 cup of honey) because everyone prefers it with honey now-- moister. The recipe makes a standard double layer 9 inch round cake. There are two frosting recipes. The dairy free one is made with palm oil and powdered sugar. You can also serve it with just sifted powdered sugar on top. I've done that too. We use special corn free powdered sugar.

It sounds like it was from the supps, then. The new supps will probably correct it. Low iron could be dietary too.

Lisa, You may want to read about ph balance. I read a lot about that in the beginning when trying to deal with my son's many issues. He is not PANDAS but clearly had issues with digestion and chronic infections for years, including reoccurring ear infections and several courses of antibiotics. A proper PH balance avoids infections because the body does not harbor bacteria or viruses when the PH is high as they cannot survive. A special diet can be implemented to do this and there are also various supplements that can be utilized to do this as well. (Baking soda, grapefruit seed extract, etc.....) Natural antibacterial supps like Oreganol are also helpful for preventative measures when there is a classroom or family outbreak. Caryn --Ear infection free and virus/bacteria free for almost 2 years now TTL.

At birth all 20 of the baby's primary teeth are already formed.... When they erupt is another thing. The spots form during development of the teeth and are called Enamel Hypoplasia or Hypocalcification. The cause is poor health in mother at time of pregnancy-- malnutrition. This is exactly what Celiac does to a person when they are eating wheat/gluten. The person's body cannot digest the protein found in wheat and as a result it causes malabsorption of essential nutrients. A pregnant woman having a premature birth is another symptom. These people are nutritionally starving. They often lack calcium, vitamin D, zinc, can't absorb dietary fats (poop floats) and are often suffering from inability to concentrate, irritability, sleeplessness (due to lack of magnesium). I highly, highly, highly suggest getting a gluten intolerance/celiac test if the person has digestive issues, neurological issues, and tooth enamel issues. There is an underlying cause that needs to be addressed and a possibly misdiagnosis of PANDAS in my opinion, or at least an underlying catalyst for all the ongoing strep infections causing PANDAS wax ons every so many months. If you eliminate the cause you may possibly reduce the duration and severity of additional infections.

I have discolored teeth with white flecks. My mother was told it was from tetracycline. My 6 year old son has them too. I have since been told that they are a sign of Celiac. He is diagnosed with Celiac and I am very happily gluten free now. Tooth enamel defects are a big sign for celiac and often times it is the dentist that diagnoses first because the peds often miss it completely. It is very sad. Food is such an easy cure. We have been on a special diet and supp program for Tigger for 2 years now. He is just starting to lose those discolored baby teeth and I am holding my breath on whether or not the new ones will be discolored as well.

Was the test done after a vitamin mineral supplement regime had been in place a while? Or was it done before any supplementation? Copper and zinc are supposed to be in balance. My son was high in copper and low in zinc/ iron anemic. This was an anomaly, except in cases of celiac disease. Low copper levels are associated with other autoimmune disorders (not celiac). Too much zinc will deplete copper. So will too much vitamin C. Be careful with sugar intake as well. It messes with proper absorption.

Shy, The new cal mag supp has much more cal than mag. Calcium competes with magnesium. Try increasing magnesium (epsom salt baths, for example) and foods naturally high in magnesium (nuts). I agree that cal supps are important if the diet is lacking in cal. We did that when we were wheat, corn, dairy and soy free. After two years my son can finally eat dairy in moderation so we phased out the cal supps and just use the diet for calcium now. We are careful not to add too much calcium (it is fortified in so many things like orange juice). We do give daily magnesium still. Was your daughter overweight to begin with? How are you with sugar intake? Is it moderate or high? Sometimes that hurts absorption. On the issue of rice allergy-- that is a long shot. I read a lot about that it it takes years to develop. She could be getting hidden gluten, though. Are you feeding her enriched rice? The process of enriching it uses gluten to bind the vitamin to the rice grain. Is she in school? Has she been recently exposed to gluten in art class? Paper Mache? Clay dough?, etc.... Is she cheating when you are not aware? My son has cheated a handful of times this year. Luckily his leaky gut has healed and we didn't see a spike in tics. But in the beginning we did see wax ons. Before eliminating rice I would just go to the cabinet and read the labels. Maybe you should do a little research on the brand names and how they are processed. (Grown near wheat fields? Processed on same equipment as wheat?) This may help you sort things out. My son has been diagnosed as celiac and we learned the hard way that we had to be very careful with cross contamination. I also agree that some supplements are problematic and need to be changed up until a balance is found. My hunch is for you to look at the rice products first, though-- just based on my own experience. Best of luck. Caryn

I got one for free from my folks and used to use it but now I actually make double batches of dough all in one bowl with my kitchen aid mixer. I pour into two bread pans (sometimes up to four) and bake them all in the oven at one time together. I do this once a week. Takes 10 minutes to make the dough and about 50 minutes to bake. It is my pre-American Idol ritual on Tuesdays. I just 'get it done' for the week that night so that I'm not tied down on the weekends baking. I freeze the extra one and pull it out when the first one gets eaten (usually in about two-three days). GF bread is much heavier than regular bread so you eat less as a rule. It is filling. We do not use yeast in our house. Every once in a blue moon I will buy a packet and make bread with it and then suffer afterwards. I cannot tolerate yeast even after 2 years off of it. Before the diet I didn't know how to make much more than Christmas cookies and Bisquick recipes. I never baked bread from scratch. It is really easy once you get into the swing of it. And now they make so many bread mixes that are GF all you have to do is add eggs, water, and stir. My recipe list is here: http://healthy-family.org/quick-links-to-g...rn-free-recipes This is where I store all the recipes that 'pass the muster' around here. We do not eat sweets often. Many of those recipes are for special occasions. The carrot cake is the best. I plan to bake it for Easter. It tastes best with honey as the sweetener. GF bread does not make great sandwich bread. Just think out of the box. Roll the lunch meat in lettuce, use rice cakes (Trader Joe's has nice ones) Suzy's makes really thin ones that make good PB and J sandwiches. (We use sunbutter instead of peanut butter for candida reasons. I think it tastes better anyway).

What is she eating, exactly? Maybe it would help to keep a journal of the foods she eats and her ticcing behavior for a couple of weeks. You may see a pattern. Most of our foods have various chemicals in them and it is possible that she is reacting to the chemicals in the foods and not the food itself. Pay attention to the brands you serve and what is in them, exactly. This might help you sort it out. My son has food intolerances/allergies and when he was reactive I saw definite patterns. At one point I determined that certain foods caused certain tics. His facial tics-- sniffing, throat clearing, teeth grinding, neck turning, all seemed food allergy related. Certain chemicals also triggered multifocal tics as well and often made them more pronounced (high fructose corn syrup, maltodextrin, ascorbic acid, citric acid, MSG.) He doesn't have them anymore but we are on a very strict avoidance diet to maintain his well being. The 'cure' wasn't overnight either. It took nearly a year of dieting to calm his immune system down. The best testing is IgG food intolerance testing. You could also try an elimination diet (which is very difficult to do). You may want to test for candida, lyme, PANDAS to rule them out as well. Often times the allergies are only part of the problem and synergistic treatment for multiple causes is necessary to get the best results.

We attribute our son's change in symptoms mainly to the healing of his leaky gut. The GABA was prescribed by our Dan Doc to help with sleep issues as at onset our son had some pretty bad sleep patterns and was often tired and crabby. We moved to tryptophan after some time because when we started the gluten free and dairy free diet I did a lot of research and read that often times these kids have hyperactivity/ attention problems because their dairy-free diet is low in dietary tryptophan. We added it and found that it was very beneficial. We have since kind of phased it out when we reintroduced dairy again in moderation. Our son is hitting his 2 year mark on the diet this month and he is doing fantastic. The healing process was a long slow road. Hope this helps.

Check out Dr. Fine's website: https://www.enterolab.com/StaticPages/Frame...q.htm#diagnosed IMO gluten intolerance can cause many metabolic problems in the absence of celiac. There are nine gluten intolerant genes and only 2 are associated with celiac. I don't know what kind of test your son took, but I am assuming it was a blood test. Dr. Fine does a stool test that is much more specific. Also, two years ago it might not have been in the blood and now it could be if your child is gluten intolerant genetically and eating gluten on a daily basis. This is a regressive disease. You are born with the gene and your diet plays a huge role in whether or not you develop a disease related to the gluten intolerance. It is toxic if you have the gene. Dr. Fine does genetic testing as well. We have tested our family and are taking a preventative route rather than waiting for symptoms to worsen.

Melanie, You really ought to get testing done to see what the underlying cause is-- whether it is yeast or wheat. If you can't afford testing you could try a simple technique to see if your son has an IgE allergy to wheat. Just rub wheat on your son's arm. Be sure to do it vigorously. Wait 10 minutes. If he develops a rash or hives you will know there is a wheat allergy and this would lead me to suspect there would also be gluten intolerance (inability to digest the proteins found in wheat). If nothing happens there still could be gluten intolerance/celiac (which you would find by doing a stool test, blood test, genetic test, or biopsy). Eating it could also cause an itchy mouth, swollen tongue, a tingling sensation in the mouth, a runny nose. These are all obvious signs of an IgE wheat allergy. (Not to be mistaken for gluten intolerance or an IgG food intolerance response). If your child has the above symptoms then it is quite possible they are also gluten intolerant. Yeast overgrowth and gluten intolerance both have similar symptoms. Gluten intolerance can cause yeast overgrowth, but yeast overgrowth is not ALWAYS caused by gluten intolerance. If your child has gluten intolerance the treatment is 100% avoidance of gluten-- found in wheat, barley, rye, and spelt-- even oats that have not been properly tested gluten free. In some cases even a little bit is problematic. For instance, I have never been tested for celiac but I know I am severely gluten intolerant. I still take regular communion instead of the low gluten (except when I feel I am under the weather and then I abstain). Yesterday the host gave me swollen glands. Today I feel better. I have always been pretty healthy, unlike my dxd son who had terrible digestive issues. He is now in recovery and we are in the process of checking his antibodies after 2 years on a strict gluten free diet. I believe the levels have gone way down based on his reactions. The doctors will tell you that it takes years to get them to go down to the normal range. So to answer your question, NO, it has to be all or nothing when you have a very reactive child whose immune system is out of whack. Your goal is to reduce the antibody levels and this takes time. Every ingestion of gluten keeps the levels elevated and this will also cause digestive and neurological symptoms. If you get consultation from doctors like Kenneth Fine of Enterolab they will tell you that lifelong abstinence is the only cure-- even in the absence of a Celiac diagnosis-- if the patient has gluten intolerant/celiac genes. These folks do not produce the enzymes necessary to properly digest gluten and it just moves around the body reeking havoc in the skin, brain, joints, etc.... Caryn I hope my response is clear and not too confusing.

Thanks! Very healthy and sounds delicious. I will have to try it.

Sheila Rogers Latitudes Online just released an article from Mitchell Sogin that discusses a Stanford Study on Antibiotic use and microbial bacterial flora in the gut. I was surprised to read the results of the study. Here is a clip for those w/o a subcription to the ezine:

We found that these made our son tic through trial and elimination too. He was IgG tested allergic to Brewer's Yeast, Corn, Wheat, Peanuts, Chocolate, and we learned that Citric Acid was a HUGE problem for him in time. I eliminated Soy because I was forced to make bread and most food from scratch and so soy was just eliminated as a result as it wasn't in the ingredients I was buying. We eliminated all dairy for the first six months too. After two years we are back to eating occasional cheese (just introduced recently), chocolate (for about a year), and occasionally naturally derived citric acid-- and I do mean occasionally-- like only when I am in a pinch. He does have dairy but never cow's milk (we allow kefir both from goat and cow) and does have minimal soy when it is an ingredient in a bought product now (there are so many available now). I really do believe that when the immune system is weakened avoiding these things can help healing. Anti fungal foods and probiotics have also been very beneficial. We have incorporated coconut, garlic, onions, etc.... into our regular diet. Just think raw food and you will be fine. We watch the sugars. I think that when healing and balance occur that some of these things can be successfully reintroduced in moderation after a long period of avoidance. Many folks reading this might get overwhelmed by the idea of removing all this stuff. I know I was. After a couple of months, though, you get into a new routine and when the kids re-adjust they (and you) will be just fine with it. My kids now prefer foods that astound my family, friends, and neighbors. It is all in what you are used to, I guess.

Sandy, I am wondering why you are doing GFCF. Is this the result of test results, if so, what kind? If not, how did you come to try this route? Also, what kind of diet is she on specifically right now? (food types, name brands). Is she cheating at all on the diet when she is with her friends? Have you ever done any gastro testing? Does she have seasonal allergies? How are her sleep habits? Caryn

Yes! Can't wait to see you all in the flesh. Caryn

Colleen, Celiac testing involves blood testing, genetic testing, and/or a biopsy to confirm diagnosis. Most docs don't do it as it is one of the most missed diagnoses there is, often going undiagnosed for an average of 8 years. Anyway, found this link and thought it might be of interest: http://www.celiacchicks.com/2008/11/oregon...ease-study.html tooth discoloration, enamel problems, etc.... These are common signs.

Colleen, Has she been screened for Celiac? Why does she need 8 teeth pulled? Are there ongoing enamel problems, etc...? The reoccurring infections despite antibiotics also make me wonder if a screening might reveal something. Have you done all the leaky gut testing already? http://www.celiac.nih.gov/DentalEnamel.aspx In many cases kids with Celiac are actually first diagnosed by their DENTIST. That is how far behind pediatricians are on this. Just my two cents. Caryn

What does that leave? Can you describe a day's worth of sample meals (breakfast, lunch dinner)? Sure! Breakfast: Jones sausage links (can get them at Costco and local grocer in freezer section) They are made with rice filler-- something some even avoid. Gluten free bread/muffins/scones-- I bake them myself. Many manufacturers now make various brands for those that don't bake. Enjoy Life carries many breakfast products including granola, snack bars, cookies, etc..... Nature's Path rice crispy cereal with Trader Joe's rice milk (no vanilla flavoring to avoid corn) Eggs-- boiled, fried in olive oil, scrambled. Supplement smoothie-- we use frozen mango chunks from Trader Joes (TJs) and add fresh bananas, sometimes strawberries, sometimes blueberries, Simply Orange Orange Juice, our magnesium for the family, our Kefir (which is not dairy free, so in the old days we used Threelac instead), and blend on high. Then we drop in some eggs (raw) and blend on low. Kids love it. Eggs are good for cholesterol and recent studies have shown that ASD kids need it in their diets. Lunch: I get these freeze dried fruit snacks from Costco. Something 'all natural' in the name. Anyway, they are called crisps and come in pear, apple, banana and strawberry. Kids love them. I also buy from Costco the Fruit Leather snacks. Mrs. Mays also sells nut packs that are yummy but very sweet. We get them now but not originally. Kids eat raw carrots, frozen blueberries (I have no idea why but they eat them like candy over here. The blue finger tips drive me crazy.) We make salads with a mini food processor and they make their own dressing with my shaker bottles. Little honey, little apple cider vinegar, some salt and pepper, spices, and olive oil. Then they shake and pour. We buy all natural lunch meats. I think the brand we get is Hormel. It is at our local Jewel store and I have also seen it at Dominicks, so Safeway and Albertsons probably has it. It is in a brown box and is preservative free and gluten free. Tigger loves the salami. I get organic beef from TJs and Costco. My hams come from Whole foods at Christmas and Easter. I get the natural chicken from T.J.s and also their ground turkey (no solution injections or natural flavors added). My turkey is perdue (gluten free). We eat potatoes, potatoes, potatoes (Dr. Semon allows, SCD does not). What can I say, hubby is Irish! Kids love peas, broccoli, beans, carrots, fried garlic and onions, asparagus, and my special gluten free cookie recipe. They drink goat milk regularly and I have recently reintroduced cheese to Tigger (he is on enzymes and tested negative on IgG for milk way back when.) We just removed it for candida cleansing purposes. Oh, and for ice cream we LOVE LOVE LOVE the coconut ice cream varieties at Whole Foods. Such a guilty pleasure. I actually prefer them to the real thing now. I get all natural freeze pops too from my Celiac store. Can't remember the brand. Things I have learned to make: yogurt (easy and fun) rice pudding (we use coconut milk-- in cans at TJs for really cheap) Kids LOVE it. Bread, pancakes, cookies, brownies, birthday cakes, etc..... You all don't know me in my PTL (pre tic life), but if you did you would really enjoy the irony most of my friends see in me having a recipe blog. I was not, NOT, the little June Cleaver that I appear like today. We ate out about three times a week. McDonald's was a weekly stop. I bought my dinners at the deli and in the frozen dinner sections of the grocery store. I never EVER chopped a raw vegetable. I just bought the frozen mixed bags with the sauce and heated them up. Everything was made with a bought jar of sauce. That was it. I didn't even know that folks peeled garlic before they chopped it and used it. I never even knew what a turnip or a parsnip was, let alone how to use it. I couldn't even make scrambled eggs or mashed potatoes (hubby always did it). So if I could do all of the above ANYONE can.

We did a candida cleanse diet in the beginning with our son. We never did use Nystatin. There is a doctor in Wisconsin (Bruce Semon) who has a special treatment protocol for patients with tics/tourettes that uses a special diet with nystatin. I contacted a few patients in his program (they have a forum) and received positive responses. I believe it works. We personally did not get a positive test for candida for our son as we did not test for it until 5 months into the diet change. Big mistake. I wish we had known about the necessary diagnostic tests at onset. We were just stumbling in the dark. Cheri has great resources in the helpful threads sticky thread: http://www.latitudes.org/forums/index.php?showtopic=2459. She has listed the treatments that have helped her son and has shared with us some of the books on candida dieting she has used. I have a family friend who did a master's thesis on treatments for Tics and Tourettes. She interviewed Dr. Semon extensively and was very impressed with his work. If you read Dr. Shaw from Great Plains Labs (also a speaker at the Tics/Tourettes Conference in May) he has a lot of very informative information about candida and its role in tic disorders. Nystatin alone will not cure candida overgrowth. I agree with Cheri, that is a misstatement. Candida grows when there is a lack of good bacteria in the gut. It feeds off of sugar and yeast and will multiply in the gut. Candida produces its own waste products and they are toxic to the body. It can also provide a positive environment for bad bacteria to flourish. Chronic illness and over use of antibiotics are known to lead to candida overgrowth. Certain foods are helpful in reducing candida. The Specific Carbohydrate Diet is one way to combat candida but it is not the only way. The goal is to ingest foods that are easy to digest. Many take digestive enzymes with their meals while they are healing their leaky gut. Fermented foods, raw veggies, coconut, garlic, onion, natural sweetener honey (in moderation), dairy free, yeast free, low grain (or no grain depending on the diet). I may be missing a few things. This is the gist of it. In our case we did no peanuts, no chocolate, no corn, no wheat, no soy, no dairy, no sugar (except honey), no gluten, and we used probiotics (we originally used Threelac) for about 5 months. Then we slowly began adding some foods. Two years later, we do use some sugar now and just about everything in moderation except the corn, wheat, and gluten. We use enzymes and we also use daily kefir and have been for about a year. So to answer your question, no-- I don't think it is hokey. It is hard work though. I'm sure my son would tell you it is well worth it.

Methionine is also an amino acid that would lower histamine. I suggest using an anti histamine that is free from artificial junk. We use Benadryl capsule dye free (contains sorbitol). Our son has a corn allergy and the glycerin causes him to tic. Have you done specific allergy testing? If not, you could consider doing a brief elimination diet just to see if there is another trigger you are missing. At onset of symptoms corn was a big trigger for my son. We didn't realize this until we did an IgG test and it showed the severe allergy. We would have never figured it out otherwise. We had been on a candida diet before that and had seen improvement but nothing compared to what happened after we went gluten and corn free combined. After we learned about corn we realized the the supps we were giving all had corn in them. (even the fish oil-- coromega).