Caryn

C.P. I have to preface that I am not diagnosed celiac, but I am doing great on a gluten free yeast free diet after YEARS of health problems, mostly digestive and histamine related. I have large white spots on my two front teeth. I was told by my mother it was because I had been on long term antibiotics as a child (birth to age 6). If you google search enamel defects you will learn that white spots are areas of decalcification, something that can also be attributed to a lack of calcium absorption. This is a hallmark symptom of celiac as many have issues with osteoporosis. Others claim the white spots can be from excess fluoride exposure. Injury can also affect tooth color (greyness) but is usually localized to the affected tooth. If you see a pattern on all exposed teeth and also see other signs of digestive issues then I definitely recommend you look into testing. I went GF before I understood the need for testing. I just completed the genetic screen for Tigger and will follow suit with the others, including myself in due time. Hope this helps. Caryn

Tooth Enamel Defects: (This is a cross-post) Apparently it is very commonly the first sign of celiac disease and often dentists are the ones that refer their patients to gastroenterologists for testing. Celiac is currently in the spotlight research-wise at the moment. We all know here that most of these kids have multiple allergies/intolerances/ causes for digestive problems. It probably isn't that 'cut and dry' for Tourette's. I would suggest you check into it though, if you haven't already, just to rule digestive issues out. Here is a study: Dental enamel defects in celiac disease

Very strange, but a similar comment appeared on a celiac support group I belong to just this week. Apparently it is very commonly the first sign of celiac disease and often dentists are the ones that refer their patients to gastroenterologists for testing. Celiac is currently in the spotlight research-wise at the moment. We all know here that most of these kids have multiple allergies/intolerances/ causes for digestive problems. It probably isn't that 'cut and dry' for Tourette's. I would suggest you check into it though, if you haven't already, just to rule digestive issues out. Here is a study: Dental enamel defects in celiac disease Hope this helps. Caryn --I will crosspost this under the wheat category too.

We had one. Test was normal, both sleeping and awake.

Mary, Just wondering-- is there maybe something in the vits that doesn't agree with your son? You will have to call or email and ask, but I noticed that the website lists no wheat, corn, yeast, milk, egg, citrus, etc.... but does not mention soy? Is your son still GFCF? Nose bleeds are often a sign of malabsorption and possibly a vit K deficiency. I know Bonnie's do not have K in them, but they are pretty good vits none-the-less. I remember you saying a while back that you had introduced enzymes. How is that going? Maybe the tics are in relation to the enzymes? We did Bonnie's for a while last year (about 5 months) before we switched to a compounded vit for Tigger. We are no longer needing high vit doses as long as we stick with the diet. At one time our Tigger needed between 8-10 vits a day to keep from ticcing. He still had mood swings, though, as Bonnie's doesn't have adequate zinc for pyroluria (or at least didn't last year). We were pretty uncomfortable with that amount as Tigger was only 4, so we moved to a compounded vit (only 4 a day), and now we only use it when he is under stress or recovering from cross-contamination, or the artificials after eating out. He no longer has the mood swings. We do regular vits with mag and fish oil around here now. As far as the Acetyl Cysteine, I think you may have me confused with Carolyn.N? I haven't yet decided on it, but I am reading the threads. At the moment I haven't an opinion either way. We do not give any artificials over here at the moment unless it happens by accident (Like Tigger opening a jar of pickles at my mom's house and downing 5 before we realized it.) Luckily he didn't react like he might have a year ago even though it had the dreaded corn and Yellow #5. He has a cold right now and started a throat tic a couple of days before it hit him. Sorry to ramble. Caryn

Yes, We use gluten free oats and our Tigger loves them. We do it once a week at the most. He originally tested intolerant to oats (low on the Alcat) last year. He tolerates them fine now, although we did wait almost a year to reintroduce them. Caryn

Could be food related, could be stress, or could be his teeth! My BIL was suffering reoccurring headaches, on and off for a couple of months-- he was light sensitive and had migraines on and off. Went to all kinds of docs and had all kinds of tests. Finally went to a dentist and found out it was an abscessed tooth! Just thought I would throw this out there because sometimes we get 'fixated' on the one 'condition' and we may need to actually 'think outside the box' at times. It may have nothing to do with the headaches, but then again it might!

Tom's Mom, Rotisserie Chicken from the grocery store has a lot of bad junk in it, from what I recall way back when. As far as the enzymes-- I noticed myself when I fed ds 'outside' food (fully spiced, marinated, or prepared and with preservatives, etc...) Easter weekend with enzymes (did it three meals in a row, as we were going here and there), that he developed some mild ticcing despite the enzymes. (We have Trienza). I am thinking that the other ingredients in the rotisserie chicken could be the culprit. Check out the label the next time you got shopping. I don't remember what all was in it but I just remember being shocked at the label, and wondering why all that stuff needed to be in it. Caryn

We got the pyroluria testing done through our DAN doc, but you could order it yourself online or ask that your general practitioner order it for you (so as to get the insurance to pay). Not to plug my own blog, but I wrote an article about it a while ago when I was trying to understand it myself. http://healthy-family.org/caryn/63 There is a link on the word 'urinary test' that goes to the lab we used. Direct Health Care Access Lab Do read about it first, though. You may decide he doesn't have the many symptoms after reading my article. Not all people who have screen sensitivities test positive for pyroluria. There may be other causes, as Cheri points out further down this thread. I also have a hard time with the glaucoma test, but not from the light. It is the air puff. Freaks me out, to be honest. We are in the process of getting genetic celiac testing done for Tigger. That will help us plan for his future. If he has certain genetic markers it pretty much sets him up for celiac disease in his future if he is eating gluten regularly. For now I plan to stay gluten and corn free diet. He is only 5, and we have a long way to go. I imagine there may be some resistance as he ages.

Pat, Yes! They did not respond on the corn so I did not include them 'yet' on my list. Glycerin is often made from corn. I also tried 'kiss my face' too. Our favorite shampoo at the moment is ShiKai (also did not 'yet' respond). Tigger uses this one no problem, even with his corn issues. They sell it at our local grocer, too.

C.P., With all we are dealing with I think we moms deserve a few selfish questions about beauty! Are you taking fish oil, drinking plenty of water, and eating foods high in antioxidants? That helps. I also take Evening Primrose Oil, too. It is wonderful for making your skin soft. I started this about a year ago and this has helped my complexion a lot. I don't do all these supps every day, just when I think of it, probably a few times a week, for sure. I used to have puffy dark circles and used a lot of moisturizers on my dry skin (which I was reacting to). My skin often had small blotches that I covered with concealers and foundation. I was a major makeup user at one time. I can now go without foundation and look okay. The Afterglow mineral foundation covers lightly and does a nice job of smoothing out the skin. You definitely need the bronzer to get a good color and natural looking finish. Alba moisture cream is made with 100% vegetable ingredients. I bought it but don't know if it has wheat or corn so I omitted it from the official list until I hear from the company. I do use it (but not every day) and it feels good. I think it probably has corn in it, so anyone with corn issues take note. I think that is just about a given with the moisturizers. Gluten is not so much in the natural products. Caryn

Jenny, Start by replacing your sauces and condiments, cereals. This can be done without breaking the bank. You are lucky we are headed into summer and so gravies and soups are 'going out' for the next few months. You can get GF noodles at the local grocer. This might be a good start for Isa if she is a noodle lover. If you have a newer Dominicks near you they are carrying a lot of organic and gluten free items now. You have tried Isa on a GF diet a while back. She didn't seem to miss the bread, you said. What is it that seems so overwhelming for you? Just start small and get your feet wet, then you can gradually eliminate over time until she is completely GF. It can take up to a year to get gluten completely out of a person's system, so there will not be a major change right away in most cases, especially if there is dysbiosis in the gut. But you will see gradual improvement, and if gluten and dairy are really culprits she will stabilize. The best way to do it is to go all the way from the start. We do not eat a lot of GF replacement products on a daily basis. We eat a lot of salads (I grind up the lettuce leaves and all 3 kids eat it no problem, even my almost 2 year old.) I do not use salad dressing at all. I just chop up fresh fruit instead and squeeze a lemon on it. Sometimes I add maple syrup or honey. You know where my recipes are if you want some ideas, etc. If you need to stick to a budget consider planting a mini garden. I have plants growing all over my kitchen at the moment. I will be moving some to the deck and be planting some in the garden out back. You will save a ton of money, not to mention it is healthier. My kids love fresh beets. Very healthy and easy to grow from seed. So is lettuce. Peas are easy and so are green beans. You can freeze the peas and beans too. Onions are a cinch and so is garlic. We have gone on a two week vacation before and left these veggies to fend for themselves. They survived no problem. Isa is only 3 so this is the perfect time to try this route. The most success is seen when the kids are younger. Caryn

sorry, double post

Sometimes it is just to get attention from the adults in a child's life. It is affirmation that they matter and the attention and sympathy they get is equated with love. I think how we respond makes a difference in the patterns they repeat. Caution is a natural born instinct and part of a child's true self, but I really believe that we can help them to focus on positives rather than negatives through our example, and that can help them overcome some of the 'health' and social stresses they encounter as they grow up. Just my two cents. Don't mind me.

Geeze, I didn't even answer the question. Screens.

We must be on simultaneously. LOL He was. Very much so. Until we treated him for the pyroluria. It will come back on occasion when he is lacking sleep or hasn't eaten the greatest (not necessarily gluten or corn cross contamination, but just 'junky') I am not religious about the vitamins. I give them if I see that he needs them. So not as a preventative measure on a daily basis. I just saw a salicylate sensitivity develop some time into the high vit dosing and after a google search I decided to cut back. I don't know why this happened exactly, maybe the GF diet cleared the gut issues that led to the pyroluria in the first place and the once beneficial doses became kind of toxic? We haven't gone back for our lab 'retests' to see where he is at now after being on the diet a year. Caryn

Jenny, How is Isa eating now? If she is not on a highly gluten-filled diet at the moment it may be easier than you think. If she is eating a large amount of gluten multiple times a day then maybe you could start by simply cutting back and adding a few new foods, one at a time. I can't speak for everyone here that has gone the dietary route, but for us it was an evolutionary process. We just kept weeding out one reactive thing after another until we 'got to the bottom' of things. It took us five months to get our groove on. Even now I am still learning. You don't want to overwhelm yourself because if you do you will not have the strength to stick to it. Evaluate what you have done so far and try to make reductions and changes where you can until you are comfortable with it. Any effort you make at all will be beneficial if it gets her eating more fruits and veggies and less starchy fillers. Have you looked into any local area support groups? I just found out that one is starting up in my hometown next month. I am really excited about it. (This one is for kids with multiple food allergies). You may find an autism support group in your area and might possibly meet someone there that is actively doing a GFCF diet and is willing to help you get started. Inquire at the local public school about it. The autism support community is pretty big. For us Feingold is a cinch now, as is the gluten free thing. Our biggest conundrum is that darn Corn is everywhere. Needless to say I am in the kitchen a lot. Grrr! Caryn

Betty, Tami, All: I had much confusion over this issue too. It is much talked about in celiac circles, LET ME TELL YOU!!! Rice Dream has NOT EVER changed their formulation. It is the same as it always was. Some celiacs say it is okay, some say no way. It is a matter of preference and tolerance, really. Here are some facts, taken from a thread written in 1994: Here is a recent post discussing the new marketing strategy: http://surefoodsliving.com/ Now, after all that bad news, may I just say that there are several other brands out there that do not use barley enzymes in the recipe. Also, there is a product called Darifree that works in baking (but contains corn so we don't use it!). Also, if you are worried about the grain alcohol in products I can almost certainly assure you that 99% of the time nowadays the alcohol comes from CORN and not Wheat in the U.S. For us it doesn't matter. --Betty-- I would say that if you use it occasionally it is fine. If your son knocks back a quart a day I would switch brands. Tami, Very interesting theory on the effect of dopamine on the retina. Caryn

In my curiosity I started researching personal products that were gluten and corn free for my son. What I eventually learned was a whole lot of stuff about the nasty chemicals that are in our conventional soaps and lotions from the grocery store, drug store, and even the beauty conglomerates. My curiosity got the best of me and after a month of investigating numerous companies to verify the ingredient listings of their products, I wrote a little post about my findings. A small minority chose to respond to my requests, and not surprisingly, they were more 'green' companies. So anyone interested in reading about what I learned and who makes what, check out my most recent post. http://healthy-family.org/caryn/466 Anyone with a teenage daughter who is managing tics through natural means may want to look at these products. I did double check with the manufacturers for each product line I mention. Most of the companies allow full disclosure of their ingredients right online for anyone interested. Please consider your personal needs before ordering any product, and do inquire again with the manufacturer if you are unsure of any ingredient. Thanks! Caryn

Betty, Was he tested for pyroluria? Our ds, also GF as per IgG test, was dx'd with pyroluria. I don't know how severe the IgG results were for gluten on your son's test, but long term gluten diet in the gluten intolerant will cause gut dysbiosis and lead to imbalances that take some time to be corrected. I would be surprised if the GF diet would work in a matter of days indefinitely. Gluten takes a long time to get out of the body. Also, stress is a major factor as well (especially with pyroluria). You could get an at home pyroluria test and will get results in about a week. In our case the gf (and corn free as per IgG) diet works great to stop tics, but took about five months before we were tic free. Any ingestion of gluten or corn will cause a flair up that lasts about three days. I have also cut out any foods with neurotoxins in them. (We do a feingold diet as well but do eat some salicylates). One last note, It is quite possible you have reintroduced a food that actually contains gluten (like Rice Dream Rice Milk) or a vitamin that uses gluten to bind the nutrients. This will cause flare ups. For example, I was seeing constant teeth grinding last year after the diet change and could not for the life of me figure out the cause. It finally dawned on me that I had to cut out the citric acid in my son's diet as it is a corn derivative. Hope this helps. Caryn Pyroluria Info

This is a cross post Here is a study that connects OCD to untreated celiac disease: http://psy.psychiatryonline.org/cgi/content/full/43/4/331 QUOTE The mechanisms involved in the etiology and pathogenesis of mental and behavioral disorders related to CD are unclear. Hallert and Sedvall6 reported an increase of 33% in major monoamine metabolite (5-hydroxyindoleacetic acid [5-HIAA], homovanillic acid, and 3-methoxy-4-hydroxyphenylglycol) concentrations and a 10% increase in the concentration of tryptophan in the cerebrospinal fluid (CSF) in adult CD patients after 1 year on a gluten-free diet. Hernanz and Polanco7 found significantly decreased plasma concentrations of tryptophan, citrulline, tyrosine, valine, isoleucine, and leucine and significantly diminished ratios of tryptophan to large neutral amino acids in children with CD, regardless of dietary treatment. In untreated children, plasma tryptophan was 84% less (mean±SD=13±4 µmol/L) and in the treated group 62% less (31±3 µmol/L) than in children without CD (81±22 µmol/L), and the plasma tryptophan ratio was found to be significantly lower in the untreated group compared with the treated and control groups. Nine of 15 children with untreated CD showed signs of "behavioral disturbances" and were irritable or apathetic. In some of these patients, mood and behavioral problems improved after starting a gluten-free diet. However, to our knowledge, these findings have not been confirmed elsewhere. To our knowledge, there are no studies based on structured psychiatric interviews that have examined mental disorders associated with CD in children and adolescents. We describe two adolescent patients who suffered from severe mental and behavioral disorders before receiving a CD diagnosis. In both cases, psychiatric status considerably improved soon after the commencement of a gluten-free diet. Caryn

Here is a study that connects OCD to untreated celiac disease: http://psy.psychiatryonline.org/cgi/content/full/43/4/331 Caryn

Have you done an EEG to rule out seizures?

What kind of movements does he have? Is it like restless leg syndrome, limb jerking? Or is it facial?

Crosspost from easy bruising thread.... I was always an easy bruiser as a kid. Just want to throw the celiac symptoms your way as that is one of the signs. (after a year gf I no longer have easy bruising). From: http://www.nlm.nih.gov/medlineplus/ency/ar...33.htm#Symptoms I will cross-post this under the wheat thread in essential threads. Caryn Here are some symptoms I no longer have unless I get glutened: canker sores, muscle cramps (used to get those annoying cramps between the toes, the kind that are excruciatingly painful, low blood pressure (to the point where I would get light-headed often), anemia, easy nosebleeds or reoccurring bleeding gums on occasion. Also, the gastro, of course, as many of you know. When I started on the gf diet I would allow myself to 'cheat' when I got the taste for something. I feel so much better now that I have absolutely no desire to cheat at all anymore (besides, I'm learning how to be a pretty darn good gf baker anyway!)