Caryn

Hi Nick's Mom, I have been doing a little archive digging and googleing today. I found a website for a doctor in Wisconsin named Bruce Semon. http://www.nutritioninstitute.com/bruce_se...d.html#location I searched through the archives here at ACN but I haven't yet found a mention of him in past posts, however there is a thread about yeast that I re-familiarized myself with. I don't know anything about the practice, myself. I would be curious if anyone does? Anyway, let me know what you think. Caryn

Thanks, Kim. I found this article you copied by Dr. Usman very interesting. I am beginning to wonder about gut microorganisms playing a huge role in this myself. I just read a really good article about how gut dysbiosis can CAUSE multiple allergies. I know many, not all of us are dealing with kids that have a laundry list of allergies. We don't have a genetic connection to TS in our family. I found the following link an interesting take on how our modern world can contribute to gut imbalance. http://www.food-allergy.org/root3.html Chemar, You posted a while back about candida diets-- and recommended a book? I really think I need to bone-up a little more on this subject. I read an informal survey on another forum asking mothers (with kids suffering multiple allergies) how many were on antibiotics while pregnant with their afflicted child. The response was overwhelmingly, yes. I was, twice. For my second child I was not, and he seems to be 'healthy as a horse'. Caryn

I added another post under specific carbohydrate diet a minute ago that talks about gluten free diet and candida. Maybe this will help to explain better my last post. I reread it after reading Chemar's post, and I apologize if it sounded like I was 'discounting' chiropractor and acupuncture care. That is far from the truth. We visit the chiropractor for several things, and I believe that acupuncture is good for improving liver function and allergy symptoms, as it did for my father's friend who had mercury poisoning. However, in our case, I believe my son's symptoms were related to his gut issues and that for his specific healing we needed to heal the gut with probiotics and diet. Look at some of the symptoms that are on the web page I posted and see if they are true for your daughter. http://candidapage.com/cccomp.shtml I was an infant and small child that took a heavy amount of antibiotics long term to keep me healthy as I had a congenital kidney problem that was not discovered until I was 6 years old. As a result gluten and candida issues have plagued me on and off for most of my adult life (and I was unaware of it for most of my adult life too). Candida produces a waste product that can cause neuropathy as the body does not properly dispose of it naturally; it just accumulates. Taking probiotics are essential, even when you are feeling better. Some experts claim molybendum is essential to break it down and dispose of it. This is also part of our treatment through Pfeiffer. I am a perfect example of someone who would stop taking the probiotics when I was feeling great and go back to eating whatever I wanted, only to bring it all back on again. Candida is hard to kill. It causes lifelong episodes of hard to fight illnesses that other people just bounce back from. And if you are gluten sensitive it only exasperates your problems even more. I urge anyone who is giving long-term antibiotics to look into gut related issues, just to see if MAYBE, just maybe, there is a connection between the pandas/pitands flareups and the gut. Your doctor sounds like he/she is making just such a connection. This is encouraging. I think there should be more studies done on TS, tics, and the proliferation of candida. Caryn

Here is a good informative article by Dr. Ron Hoggan, Ed.D. Why is Gluten Excluded in Candida Diets? Many of the Candida diets also suggest excluding gluten from the diet. What isn't explained is why this particular protein is excluded and other proteins are not. Usually sugars are the main foodstuffs to exclude. In this article Ron Hoggan explains his theory of why gluten is a problem for people suffering from yeast problems. Date: Fri, 14 Feb 1997 From: Ron Hoggan <hogganr@cadvision.com> If we assume that yeast overgrowth occurs when "friendly" intestinal bacteria are killed off by antibiotics, and the yeast, among other things, interferes with adequate absorption, then they do have a point. After all, some B vitamins require the bacterial action in the intestine, to be absorbed. What disturbs me is that I doubt that these recurring candida infestations could happen without gluten or lactose problems. Sure, antibiotics kill off the "friendly" bacteria. But that should be a very temporary event, followed by re-colonization of the gut, by bacterial cultures. What stops that return of the bacteria? A condition where clubbed and flattened villi cause decay of food in the intestine due to malabsorption. In that case, the candida is provided with food so it can continue to proliferate. If gluten/casein is eliminated from the diet, the situation will soon normalize, in most cases. Then a return to a normal diet, after the repair of the intestine has taken place, will not result in immediate symptoms. In fact, it may take months or years before sufficient intestinal damage results, and the symptoms return. The conclusion drawn from this is that a new return of the candida has taken place. Within limits, this is a correct assessment. But it ignores the underlying problem. The underlying problem is gluten-induced intestinal damage, but because the Candida is easier to identify, the underlying pathology is missed. If I'm right, then these people with recurring and chronic yeast infections will be at much greater risk of developing stomach and intestinal malignancies, especially lymphomas. If they are right, they get to eat a food that is of questionable nutritional value, and has been identified as causing a variety of other ills. It is a lop-sided equation, but I don't know how to convince them that they are walking into the lion's den. It is too bad! Best Wishes, Ron Hoggan Calgary, Alberta, Canada I found an interesting website that compares symptoms of candida to gluten intolerance. There seems to be a lot of similarites with the two. http://candidapage.com/cccomp.shtml Food for thought! Caryn

We did try chiropractor and acupuncture initially with Tigger, and IMO it did not seem to make a tremendous difference in his condition. We also did an elimination diet at the same time. We quit doing chiropractor and acupuncture and stuck it out on the diet for six months. At about month five we saw great improvements in our son. We have introduced all of his initial allergens back into the diet except wheat and corn. Ticcing has not completely stopped altogether as he will resume after ingesting allergens. If gluten intolerance is a problem I think the gluten free diet will clear up the condition without the additional treatments (we do follow the dietary recommendations posted here: vitamins, fish oil, probiotic--all this is important as someone who is truly suffering from gluten syndrome will have many deficiencies as a result of malabsorption). If gluten syndrome is truly the cause of your daughter's shoulder tics then she will need to be gluten free for more than two months, and possibly gluten reduced or gluten free for life. We made the mistake of going gluten free before pursuing proper testing for gluten intolerance. Studies have shown that gluten can act as a neurotoxin for certain people with genetic predisposition. (Dr. Rodney Ford says 1 in 10 have gluten syndrome, new studies suggest 1 in 133 have celiac). Once your daughter goes gluten free the antibodies will diminish and you will not know the exact possible cause of the neurological phenomena. Look into Enterolabs and consider possibly ordering a genetic screening and gluten sensitivity test prior to beginning the gluten-free diet. This will give you peace of mind, and a clear idea of possible causation. It is not uncommon for gluten intolerance to run in families. Hope this helps. Caryn

This is looks like a promising diet for gut issues causing neurological dysfunction. This diet is used for crohn's disease, colitis, Autism, spectrum disorders, and other debilitating illnesses with great success. They have recipe ideas, safe-food lists, etc .... It is worth looking at, I think, and may shed some more light on what is going on with some of our kids digestively. http://www.breakingtheviciouscycle.info/te...s/pam_ferro.htm The diet is scientifically based and its main purpose is to 'kill candida' as far as I can tell. It is not specifically dairy free, they do include cheese and yogurts-- I believe the key is purity and presence of good microbial organisms. They omit sugars and starches, GF flours except nut-based flours. Has anyone heard of this? I would love to hear your thoughts on this. Caryn

I just heard on the news that the FDA has issued a warning about Tamiflu--- http://www.webmd.com/news/20000112/fda-iss...about-flu-drugs (from 2000)-- This article basically says that the flue drugs are only good w/in the first 48 hrs of the outbreak. http://www.webmd.com/cold-and-flu/news/200...tamiflu-warning (recent warning that includes symptoms of delirium and self-injurous behavior--mostly in Japan.) I think I would just let my son ride it out if it were me. The side effects might be worth it if my child did not have a neurological disorder to begin with and he was sick enough to really need it. Most of us recover fine from the flu without special medication. We all got sick here with colds at our house except Tigger (must be the vits and diet-- hee hee). He is ticcing a little more than usual and is sleeping more. I think he may have been exposed to it and his body is fighting it off. I hate the start of winter. It is so yucky. Caryn

Sunflower, I read through your post and noticed your boyfriend has some symptoms of food intolerance/allergies. It couldn't hurt to check it out, if he hasn't already gotten antibody testing done. We have a son who has been stable and with very minimal symptoms since we began a very strict gluten and corn free diet for him. He only tics after being exposed to gluten and corn in my opinion. We also practice an organic, additive, preservative, and color free diet as well as include daily supplements. Does bright light bother your boyfriend? Flashing screens? Does he remember his dreams when he wakes up? I have began to notice that we when go to certain places my his tics get worse. Does this happen to you? I am trying to check if its just an accident and will double check next time we go to these places again anyway what happend... we were driving in the car going to the supermarket his tics were very mild and somewhat undercontrol we enter the supermarket the minute we enter his head movements start more frequently and severly so does his eye blinking....literaly the moment we put foot inside the supermarket then while he was driving I took some bread from the back seat and made myself a ham sandwich the air conditioning was going and windows closed. the moment I opened the bread bag he started ticcing Could be a wheat allergy. Some Celiacs say their allergies are so severe that inhalation will cause major symptoms. They do not work with dough/playdoh as it will cause a reaction (Same with paper mache). then went to doctors and same thing happened. The moment we sat down at the doc he started ticcing. he has tic so he is always ticcing but the go from mild to bad quickly anyway I again asked him how he felt I massaged his head just incase he was stressed but seriously he looked relaxed and he confirmed that he felt relaxed when we walked into the doctor and sat down.. I guess it could be a coicidence that certain places cause more tics? meds I also notice that he has troble swallowing medicines as his toungue does not do the normal thing - toungues do when one says "Ahhhhhh" his tougue does not lie flat but rolls up it seems like he can't get his toungue to go flat so that doctos can examine him. (This is also a sign of food intolerance/allergy. It is reported that gluten sensitive people get swollen tongues and also frequent canker sores/mouth ulcers) He usually prefer poders to tables he can break into pieces as he is afraid he will choke with the pill. I think this might be because of the flem in his throat (another sign of a food allergy situation), which he feels restricts his throat and makes him want to grunt and clear his throat - this is what he has told me. Body temperatue He also seems to complain often of feeling hot and seems to sweat quite a fair bit (this is another symptom often reported by celiacs/gluten sensitive people. Does he get really tired after eating food with bread? Does he also get cold extremities after eating? antibiotics when we started on the antibiotics his symtoms seem to be getting better and better gradually but I am still putting the pieces together so that I can do futher test with the doctors. Pandas i hear that most people with pandas when they are sick their symptoms get worse but thats the opposite with my boyfriend, when he is sick his tics get better. he alsmost looks like he doesn't have tourettes at all. I am trying to make sense of this? I don't understand why a pandas individual would (tics get worse) if they are on long term antibiotics? woudn't the antibiotics prevent the tics or infection coming on strong? him on antibiotics when his on antibiotics his symtoms die dow and he feels "heathy" it stop him from sweating, make him feel more calm and tic less. Be sure he takes a good probiotic like healthy trinity after the course of antibiotics. If he has gut issues it is very important. Antibiotics kill both the good and bad bacteria. Our bodies need good bacteria to help breakdown and digest our food. Still doing investigating on this have a few ideas about whats going on but its tricky but I am slowly putting the pieces together and still waiting for blood exams to He was diagnosed with tourettes when he was 13 but I am begining to think it might be a somthing else that resembles tourettes come back! Has he had a gluten intolerance or celiac screening? Allergy testing? He should look into a white blood cell test like the Alcat http://www.alcat.com/ or celiac/gluten intolerance testing at enterolabs. https://www.enterolab.com/StaticPages/Frame_Faq.htm Hope this helps. Caryn

What brand(s) were or are you using? I found this interesting article: Fish Oil Side Effects Many consumers are concerned about the quality of the fish oil used in omega-3 supplements. There are also questions about fish oil side effects from mercury contamination in some fish oil products. In an attempt to answer these questions, Environmental Defense (formerly known as the Environmental Defense Fund) through its Oceans Alive program conducted a survey of 75 different companies that produce fish oil supplements. Though common side effects fish oil are mild, the ones that are caused by fish oil mercury contamination can be very serious. This is why it's absolutely crucial you only buy only fish oil that has undergone molecular distillation. Mercury exposure is particularly hazardous to children and women of child-bearing age, but health concerns do exist for men and women who do not plan on having children. Mercury is a poison and has been found in the fish we eat due to industrial pollution. Standards for allowable levels of fish oil mercury contamination vary among government organizations. Oceans Alive found that the Council for Responsible Nutrition, an association of companies that supply nutritional supplements, has standards that are equal to or higher than the most stringent government standards. The normal or common side effects fish oil consumption may cause are diarrhea and a fishy aftertaste. The side effects caused by mercury poisoning range from birth defects and learning disabilities to hair loss and fainting spells. Omega-3 supplements purified by molecular distillation do not pose a risk of fish oil mercury contamination and therefore no risk of the side effects associated with mercury poisoning. The more common fish oil side effects (that is, even those that has undergone molecular distilltion) can usually be avoided by taking with food (even a cracker or small amount of juice will prevent the fishy after taste) or reducing the dosage. However, some mild side effects may still happen, such as having the fish oil "repeat" on you. Another precaution is if you are using fish oil in conjunction with blood thinners. This is because fish oil itself is a blood thinner, and taking too many blood thinners may cause excessive bleeding. So if you are taking any type of anti-coagulants, let your doctor know before you add fish oils to your health regimen. Most companies will voluntarily provide purification details to their customers who are concerned about fish oil mercury contamination and fish oil side effects. To learn about the highest quality molecularly distilled fish oils we personally take after having researched numerous products on the market, please visit http://www.omega-3-fish-oil-guide.com Article Source: http://EzineArticles.com/?expert=Dan_Ho

I know I'm beating a dead horse, but my curiosity has the best of me. I found this article and thought it was very enlightening. http://www.seedsofdeception.com/utility/sh...le/?objectID=36 There has been great concern that genetically engineered crops might increase allergies or immune sensitivity in the population. Soon after Monsanto’s genetically engineered soy was imported into the UK, for example, soy allergies skyrocketed by 50 percent. (No follow-up studies were conducted to confirm a link.) At a Russian press conference held on 11 December 2003, a group of scientists announced that the number of people with symptoms of allergy increased by three times over the past three years, and that the increased consumption of genetically engineered foods by the population might be the cause. Allergies are similarly on the rise in the U.S., where genetically engineered foods are eaten regularly. Many scientists are concerned that crops genetically engineered to create the Bt-toxin may, in particular, have adverse immune and allergenic effects on humans. A U.S. government-funded study published in 1999 confirmed that farm workers exposed to Bt insecticide sprays exhibited skin sensitization and the presence of IgE and IgG antibodies, both considered part of an allergic response. The workers with a greater reaction were those with more exposure to the spray - another allergy signal. While the workers did not exhibit respiratory symptoms, the period of exposure was relatively short, and the amount of Bt that they were exposed to from the spray was quite small. Bt-crops, on the other hand, create 10 to 100 times the amount of exposure. And the seeds of some of those Bt -crops have yet another 10 to 100 times that amount. Three mouse studies were conducted on a Bt-toxin, Cry1Ac, similar to that found in GM cotton and maize varieties. Two of these mouse studies showed that the Bt -toxin triggers an antibody response in the blood and mucous membranes of mice; the third demonstrated that Cry1Ac boosts the immune response to other antigens as powerfully as cholera toxin. This study verified that Bt also acts as an adjuvant. An adjuvant is an enabling agent, which increases a person’s susceptibility to other allergens and immunogens. In other words, allergic reactions as a whole might theoretically increase in a population that is exposed to an adjuvant. This might explain the increased rate of allergies described above. In a study published in Natural Toxins, mice were fed a diet spiked a natural Bt -protein. When the researchers analyzed tissue sections from the ileum (the lower part of the small intestine) by electron microscopy, they found significant structural disturbances and intestinal growth. All of these animal studies conclude that Bt is active in mammals, doesn’t degrade, may bind to the intestines, and therefore may pose a threat to human health. These studies suggest that feeding the Bt-crops to humans and animals may be premature. and here's a five minute video: http://www.seedsofdeception.com/Multimedia/21.wmv

Okay, I don't want to freak anyone out, but while researching Tiggers gut issues on Celiac.com I ran into an article that claims overuse of antibiotics can lead to crohn's disease: Card T, Logan RF, Rodrigues LC, Wheeler JG. Antibiotic use and the development of Crohn's disease. Gut 2004 Feb;53(2):246-50. http://gut.bmj.com/cgi/content/abstract/53/2/246?ck=nck Is everyone also using probiotics?

Curious about the thyme (as I sit here coughing myself, LOL) I googled it. I found this recipe at:http://www.henriettesherbal.com/faqs/medi-3-12-cough.html One cough syrup you can make at home is Kathy Kevilles Homemade Honey Cough Syrup: 1 tablespoon licorice root 1 tablespoon marshmallow root 1 tablespoon plantain leaf 1 teaspoon thyme leaf 1 pint water 4 tablespoons honey 4 ounces glycerin 1/8 teaspoon anise essential oil (optional) Prepare a triple-strength tea by simmering the herbs in water for 10 minutes, then steeping for 20 minutes. Strain the tea, then stir in honey and glycerin while the tea is still warm. Add optional essential oil. Take 1 tablespoon at a time. Stored in a cool place, this syrup will keep for 2 weeks. In the refrigerator, it will keep for several months. This recipe is suitable for children, but not for infants, who should not have honey.

which celiac forum did you join? I joined a few, some I just lurk in. Celiac.com has a whole bunch to choose from at: http://www.glutenfreeforum.com/. I also visit Braintalk by hastypastry. They have a group that discusses neurological manifestations due to celiac/gluten intolerance. http://brain.hastypastry.net/forums/forumdisplay.php?f=152. My son tested negative for glutten. What kind of test? Was it a IgG-gliadin antibody test? That is the best kind according to Dr. Rodney Ford, a world-wide expert on the gluten syndrome (pediatric gastroenterologist). So we have stopped wheat but not spelt; (yes, and I'm sure you know that spelt has gluten). He eats spelt bread a few times a week. It is hard to substitute bread. Lunch is my challange. We rely on Pamela's Gluten-free bread mix. I just pop it in the bread maker. It is great for sandwiches, you just have to be careful not to put too much water in it. I never add the extra 2 tablespoons as per the package directions. I buy in bulk from Amazon to save $. http://www.amazon.com/Pamelas-Products-Whe...nutrition-facts But I do think if i cut all glutten out I would see more improvement. It seems so hard. But you mentioned a site that help teach you how, I would love to learn how. here is a good starting point. This page offers a lot of links: http://www.gflinks.com/. This can help you learn a bit more about all the hidden names of ingredients and what to look out for. Also, if you have a Whole Foods nearby you can ask for concierge service (for free). A representative will give you a tour and offer products for you. Caryn

Mary, I'm glad some of the food ideas worked out for you. We just went to a party at burger king last friday. I fed Tigger dinner before we left. He abstained from the meal when each of the kids were getting their snack boxes. I brought homemade brownies by Namaste and we pigged out on them while the other kids were eating cupcakes. Don't worry about the other parents and what they think. It shows great love to do what we are all doing and that much comes through. The other moms are going to naturally want to feed him. That's what moms do. They will also feel bad when they hear that he can't eat any kind of junk. I don't explain too much because unless you are really in tuned to it like we all are there is really no way to communicate exactly what we are doing in a simple way. I used to just say that Tigger was allergic to wheat and corn-- that pretty much eliminated everything anyway. After a while, when he starts to really heal his gut he will not want the junk. As a matter of fact he will probably get to the point where he is afraid to eat it. My Tigger did not want to sit with the other kids during the meal. I kept cajoling him to sit with his friends, but finally he confided in me that he was afraid he would 'breath in their food.' He was afraid to even smell it! I tried to explain to him that there was nothing to worry about as long as he didn't eat it. Well, his best friend in the class soon came over to him the the two boys had a great time talking about Transformers and all was forgotten. Evan ate his cupcake and Tigger ate his brownies. Tigger had a great time at the party and aside from the 10 minutes spent eating, food was never an issue. You've got to try Namaste Brownies if your son can have chocolate and eggs. They are dairy free, and I believe you can use an egg replacer (but check the box). Namaste is a good brand as far as GF mixes go. Also check out the Allergygrocer.com (Miss Roben's) they have a search engine that will display foods according to the multiple allergens you check off. Miss Robens is only online, but they deliver fast and have some really great baking mixes, etc.... (She sells powdered sugar made without corn that is perfect for frosting). I have food reviews on several products we have come across over the last 6 months on my blog. If you haven't already, check it out: http://healthy-family.org I even found pop at Whole Foods that is okay for Tigger. He got a can on Thanksgiving and was over the moon about it. (I told him it was only for Holidays). Now he asks me every day how long until the next holiday? I know what you mean about all the restrictions. I too want to make food less of an issue for Tigger-- make it so that he doesn't feel so deprived of it. His preschool teacher is actually Celiac and she has been a great supporter. She gave me the best piece of wisdom on it. She said I shouldn't be so focused on what he can't have. He is so young that he will never crave the things that I am craving for him to have. Caryn

THYME!!

Laurie, Are you just wheat free, or gluten free? I ask this because I originally went wheat free and only saw a mild improvement in my son and relied on the supps to keep him 'stable' if you will. It wasn't until I joined a celiac forum and they encouraged me to go gluten free, and taught me how to do it, that Tigger saw such a tremendous improvement. I got really curious and started to research the whole gluten free issue. I have recently been in contact with a pediatric gastroenterologist from New Zealand named Dr. Rodney Ford who also noticed the same patterns in his patients over his twenty years of practice. He has written several papers and books; his latest book looks at neurological manifestations. I have ordered it but have not received it yet. He personally told me he has seen patients with tics and epilepsy improve on a GF diet. We experimented with different enzymes too. I can honestly say that after six months on the diet my ds is pretty stable. We see mild relapses when he gets food with gluten or corn. Other than that he is stable every day. There is no wax and wane to speak of. No OCD symptoms. He is only 4 so I have a good handle on what he eats and can monitor very closely (not in school yet, doesn't go to friends' houses to play independently). I am dying to find someone else who has gone gluten free and seen results like this. Caryn P.S. the odds of testing positive for celiac sprue are quite rare 1 in 100. According to Dr. Ford 1 in 10 of us are gluten sensitive, to varying degrees. New research is suggesting that gluten intolerance is not a small intestine issue but one that attacks the central nervous system!!!

Bottom of the feet. I put a liberal amount on. It only helps the cough. My girlfriend from Lithuania gave me an herbal tea that really helps with the head cold symptoms. It has calendula, chamomile, and another herb, I'll have to call her about it. I can't read Lithuanian and I can't remember. Anyway, it's called Bronchos and anyone living in PA, Chicago, SanFran, or any other area with a large Lithuanian population may find a small European store that carries it. Otherwise, just get the individual herbs and brew some of your own. It really helps them like an expectorant. I like this brand the best, and I have tried the herbal teas offered in the states. Bronchos just clears up the congestion nicely and keeps everything loose. As far as stopping the phlegm, I'm not sure there is anything for that in the natural sense, just that the cold needs to run its course. We do use a lot of fresh veggies and of course zinc to help kick the colds, too. I do vaporize, but not always. I have little boys and they like to play in the water. Caryn I will call her and see if I can't find out the exact herbal recipe!

Laurie, Did you test your son for allergies? Specifically gluten intolerance or wheat? OMG! Is he also low in iron, even with iron supps? Is he high in copper? Let me know!!!! Caryn

My mother told me about this one and I know that there is no scientific basis for it, but gosh darn it, it works! I rub vicks on my boys feet and then put socks on them at bedtime to relieve coughing symptoms. I checked it out on Snopes, too. -- and be careful with health food store cough syrups. Tigger had a bad reaction and after careful inspection on the bottle I realized that it had sodium benzoate as a preservative. This is known to cause hyperactivity in ALL kids. http://healthy-family.org/caryn/231

Bob's red mill uses a lot of bean based flours. IMO they have a stronger taste that isn't always as easy for a kid to enjoy. Check out their website and consider looking at Amazon.com because they sell in bulk. Sorghum is also a good alternative flour. It does not have that heavy bean taste. I found a company that sells it online. I have not ordered yet. I am happy using Pamela's mixes with sorghum (and rice). Bette Hageman has tons of recipes for gf flour mixes. You may be able to get some online. You could experiment and make a huge batch of your own mix and freeze individual bags of bread mix. We get all our gf flours through amazon and belong to their super saver club. I know what you mean about treats at school. At our son's school each parent gives a 'bag' of goodies for holiday parties rather than just one treat. I became a room mom and as part of my role I suggested we give both edible and non-edible gifts. It worked beautifully. Although you can't change everybody, you certainly can help to 'put the word out'. Everybody was really receptive and I tried not to come across as 'well this is bad for all our kids and I think we shouldn't allow candy'. Instead I just discussed the issue of allergies from the perspective of all the parents at the school dealing with allergies--peanut or wheat, milk, or otherwise. I just mentioned that parents of allergy suffering kids have to take away treats after the party and that the younger kids usually get very upset when they end up with no treats. Many moms gave awesome gifts: stickers, pencils, coloring pages/books, plastic erasers, rings, spinning tops, cards. If your son can have some gluten-containing flours it 'sounds' like it is a wheat intolerance issue and 'not' celiac. But don't take my word for it. In our case we plan to retest my son after one year to see where he stands. I also learned that sometimes a test will give a false negative if the offending food is not eaten prior to the testing. I decided to error on the side of caution. Do you belong to a celiac forum? Even if you don't believe your son is celiac they are a wonderful resource for GF recipes and products. I have learned so much from so many people on these forums. Some of our new staples are: fresh fruit on the table at all times maple syrup in lieu of corn syrup and refined sugar simply orange brand orange juice finely chopped or pureed veggies in our regular meal recipes (ie: inside the meatballs or in the lasagna) enjoy life snack foods larabars fruitabu Certain foods other than milk are high in calcium. I believe you can buy Simply Orange with added calcium. Almonds, Amarath flour (can buy it in cereal form at Whole Foods or health food store) Broccoli (I puree and add to a dish at dinner time), buckwheat-- a nice hot cereal for breakfast (which is NOT the same as wheat and does not have gluten), beans (so it would be in your bean flours), among others.... Most kids with TS or tics have a magnesium deficiency problem and calcium competes with magnesium. In the very beginning I was giving my son a vitamin supplement with added calcium and no magnesium. He was eating a diet high in calcium and wheat, and subsequently became even more deficient in magnesium. The trick is to keep a balance. Our doc suggested we give a cal/mag supplement at night if we felt our son did not get adequate calcium that day. I like to limit milk intake for a variety of reasons (as a matter of fact my son doesn't drink it-- it is only cooked in some recipes), so these are some alternatives that have worked for my son. For you the most important thing to learn right now is all the hidden names of all your son's allergic grains. This is where a celiac forum will be most helpful. They have taught me so much about food labels and terms.

"It can never be stressed enough that this board represents *MANY* different types of tic disorders and there are therefore varied root causes for those tics, and equally varied methods of treatment... The unifying theme seems to be to clean up diet (and/or environment) of anything that is problematic, and supplement deficiencies *as needed* This is where specific testing plays such an important role in directing correct treatment" Yes, Chemar-- I agree wholeheartedly with your statement. While celiac disease has been scientifically proven to cause neurological problems for children it is NOT the only cause. This is why adequate testing should always be done and why I can't stress enough the need for lab testing by a medical doctor to determine adequate supplementation. In our case we are also dealing with pyroluria, a possible offshoot of the celiac issue (I say celiac, but again I have to stress that we did not get a proper dx because we went gluten free before getting any lab testing done and thus were unable to test for damage to the intestines.) While I may have skipped the vitamins on a particular day to determine causation, I have not eliminated the supplements all together. My goal is to inform parents of possible causes when all other treatments do not seem to alleviate symptoms then a gluten free diet is an option. I would by no means start there. It is a last resort. I also post this info in the hopes that parents who suspect their child may be celiac based on similarities they find with their child and mine, (as I have posted previously), will seek a dx prior to doing any type of dietary changes. This was a gross error on our part. The celiac dx is difficult to obtain, and is grossly different than a wheat allergy or intolerance that can be outgrown. It is an autoimmune disorder in its own right, and many docs are now reporting that it is neurological in nature. But like I said before in a previous post, there is no definitive correlation between tics and celiac's disease at the moment. I believe this is because tics/TS have MULTIPLE causes just like Chemar pointed out. Thanks Chemar for bringing this up. Caryn

We had our ds formally tested with an extensive CBC and hair analysis to find out what exactly his imbalances were. Then we had a special supplement compounded for his specific needs. We used to take 8-10 Bontech vits a day to stop the tics. Our new compound is only 4 vits a day, two in the am and two in the pm. What I specifically noticed with our ds is that once his body became more balanced over time (five months) through diet, the vits were no longer needed to keep the tics at bay. The only time we see tics and experience bed wetting is when there is a dietary infraction, and it usually lasts up to four days, depending on the amount eaten and whether or not it included artificial ingredients. Now Tigger does not live in a perfect world so there will be days when he is exposed to foods that he needs to avoid. I wish the diet were easier to keep when we leave the house, but unless I put a shirt on him that says "don't feed me I have allergies" people are going to give him things that are not on the approval list. We can't change the world around us. Just Sunday he had been given three chocolate candies at a recital by an assistant that dh and I were unaware of. He told the girl that he couldn't have wheat. She figured, well, this is milk chocolate, it must be okay. Unless you are a celiac you just don't get it. The measures a celiac has to go through to keep the diet pure are pretty great. Today he has had no vits and he has no tics. Nothing. It has been nearly a week since he had the candies. Caryn

Here is an excerpt from an interesting article by Dr. Rodney Ford, M.D. (New Zealand) "Can gluten damage your brain? I believe that gluten was actually causing these two children to be sick. That is the explanation for their "naughty" behavior, their moods and their headaches. I postulate that gluten can damage your brain. I have come to this conclusion by the abundant circumstantial evidence from my observations of my patients who are gluten-sensitive. I have pondered the next questions: "Why do they have such an array of symptoms from gluten?" "Why do they recover so quickly when gluten is removed?" And "Why do they deteriorate so rapidly when only tiny amounts of gluten are eaten?" The concept of a brain/nerve disease can explain everything. The brain/nerve hypothesis "The symptoms from gluten occur through its action on the nervous system". I propose that gluten-sensitivity is a brain condition. Each and every organ in your body has some form of brain/nerve control. I propose that gluten can injure the delicate nervous networks that control your guts functions. A malfunction will subsequently lead to all of the gut symptoms that have so well been described. In addition, gluten can also directly affect brain function, which leads to the primary neurological symptoms that are so commonly seen with gluten-sensitivity. What is new? There are a number of new ideas that I put forward. These are based on circumstantial evidence. They produce a unifying theory of the symptoms that are attributed to gluten toxicity. * A brain disease I consider that gluten-sensitivity is mostly a neurological problem. A major contribution to this debate is the realization that the brain has a central role in the expression of the symptoms that have, until now, been attributed to the local toxicity of gluten in the gut. * A nerve disease I propose that gluten-sensitivity is a nerve disease. There is a gigantic network of nerves that controls every function that your gut is programmed to do. There are as many nerve cells in your gut as there are in your head! (about 25 billion nerve cells). I call it your tummy brain (or gut brain). Your tummy brain can be directly damaged by gluten reactions. This is the cause of so many sore tummies and bowel troubles. * A wide spectrum of neurological manifestations For decades, there have been reports of unexplained brain and nerve symptoms which are associated with celiac disease. Although these associations have been described, there has been no universal mechanism proposed. However, if gluten is seen as a neurotoxin, then the explanation has been found. * A very common disease Reactions to gluten have recently been documented to be extremely common. About one-in-ten people (as ascertained by blood donor studies) have high levels of gluten antibodies in their blood. My clinical studies have arrived at this same high number of gluten-sensitive people. Others have data to show that it is even more prevalent." Full text is available at: http://www.celiac.com/articles/1085/1/Glut...RACP/Page1.html for anyone interested in reading more.

Okay, Just a quick note because I have a bathroom to clean for tomorrow-- hee hee We did a six month elimination diet for Tigger. Ds was allergic to many things (all food, no environmental-- except a few toxic chemicals). We have since been able to reintroduce all but two things back into his diet. I do not religiously follow the rotation now, and do tend to give some foods more than two days in a row at times. I have gotten pretty liberal, actually. The diet is tough. I will say that, but for us it was worth it. We had some huge gut issues to deal with. Are you giving your son a probiotic? The diet really helped to heal that stuff faster IMHO. When the gut improved so did his mood. We do a lot of supplements. We did the Bontech and were very happy. We now do a compounded vit that is only 4 caps a day. Something I learned on a few celiac forums I belong to is that if a child has a neurological response to gluten it will elicit multiple allergies and when gluten is removed from the diet the multiple allergies will eventually go away. I am not sure I agree with giving digestive enzymes to help the body break down the gluten. IMHO I think that elimination is the way to go until the gut recovers. You can then reintroduce in six months. In our case wheat was still not tolerated, nor was corn. So we are permanently eliminating those two until I get brave again in another six months or year.... or never. I'm undecided right now. I will say one more thing-- after Tigger was on the pristine elimination diet five months I noticed that the vits were no longer necessary to eliminate the tics. I really wondered why that was. This was what pushed me to research the whole gluten issue. It is a neurotoxin just like MSG. Milk is considered one as well, but not nearly as strong as gluten. I now see a little more light ticcing since Halloween, mostly because of dietary infractions-- many people just don't get it. We have had several occasions where adults have given him candy with gluten even after he has told them he can't have wheat. This motivates me to continue with what we are doing. I know we are on the right track here. Caryn

Yes, And don't do what we did-- go gluten free first, before seeking a celiac diagnosis. Gluten must be eaten every day for a certain period of time (maybe Judy knows for sure) before a positive dx can be made. It is very hard to get a positive dx. We had so much luck with eating gf that we do not wish to go back to feeding our son gluten every day for a month to see if he is actually celiac. We don't definitively know. The Alcat did have a section for wheat allergy, gluten intolerance, and mentions celiac on their reports. In our case the test read severe (red) wheat allergy, medium gluten intolerance, and did not specifically say he was celiac. I do not know if the Alcat specifically tested for celiac. I assume they did not. Besides, those that are celiac on other forums say that there are only certain tests that are truly reliable. Go with what Judy suggested. For anyone in the same boat as us, I have read about a company that does a stool test. It supposedly shows a much higher rate of positives and is therefore not highly regarded by conventional docs. It is an option for people already practicing gf diets, as there need not be a month or more of eating wheat every day for dx. We have not done that. Right now we are happy going along as we are. I am terrified of giving my son a gluten filled diet again. I did read somewhere that a severe wheat allergy coupled with gluten intolerance that is corrected in a child before the onset of actual celiac's disease can mean a return to moderate gluten intake later as an adult. I hope it is true. I feel like we are getting chased by an elephant here. Caryn P.S. I also read that for families with gluten sensitivities it is imperative that we do NOT feed our babies and toddlers anything with gluten until they are over 2 years of age. If anyone suspects gluten sensitivities in their older children please read the labels on your baby jars. Gerber has a lot of products with gluten. We put our baby on a gluten free diet along with our Tigger and he is thriving. I have found that they actually eat more "real" food now. Baby eats a whole apple, skin and all (not core and seeds :>)) and this amazes people. Oh, and one more thing-- I also read that severe gluten intolerance can cause multiple allergies--it is a whole gut related thing. Watch for candida, too. They claim that a long-term gf diet can actually eliminate other digestive allergies over time (like three years or more). Some celiacs say you should eliminate milk at first and then return to it after the gut has had significant time to heal.... Just food for thought. Sorry for the pun Everyone in the States have a happy holiday.