Caryn

If you have allergy tics, then a completely clean diet will stop the tics. And exposure, even a small amount, will create tics. Exposures can elicit tics anywhere from 30 minutes to 4 hours after ingestion and can last up to four days. In our case our son is gluten and corn intolerant. He used to have several chronic multifocal tics like grimacing, eyeblinking, neck turning, head nodding, throat clearing, sniffing to name a few. He used to do a bunch at one time (thus the term multifocal). I remember giving him a yogurt once a long time ago and he erupted in tics afterwards then began to behave very oddly, bouncing off the walls and getting naughty. It was just after joining the ACN forum. I quickly read the label. There was corn starch, red dye #40 in it. This is what started my thinking on allergies and chemicals. We ended up taking an IgG food intolerance test through ALCAT (there are many companies that do them) and then we stuck to a diet that avoided all the foods he tested positive for. He improved fantastically. Our son has been stable now for almost 2 years. He is 6. His symptoms started at 3 1/2. If he has exposure now (corn starch dusted on cheese, corn in table salt, etc....) then he will grind his teeth a little bit, or sometimes he will clear his throat a little. The frequency and duration is nothing like it once was. I think that is because of the 'bucket theory' that Carolyn N. once talked about. Small exposures are manageable but when you fill the bucket with the allergens it will tip over and a host of symptoms will erupt. I also use Benadryl when I know he has had exposure. We do not eat at places like McDonalds because it is all poison to him. I keep all kinds of snacks in my purse or the car and so when we are out and he's hungry there is something for him to eat. When desperate we eat from the grocery store instead of a restaurant. If you are in college you could go to the store, read a few labels and pick up a few things then meet your friends at Starbucks to hang out and talk. Buy bottled water if you need to get something. If you go to a party, bring a snack you know you can eat and then offer it to the group. We bring Cap Cod Potato Chips (not fried in corn oil as all other chips are). This way you have something to eat and you look 'cool' to your friends without having to go into this whole, 'well I'm on a diet because' thing. Just tell them you are saving your money for something and don't want to waste it on eating out. The top allergens related to tics according to Sheila Rogers book are: Milk, Wheat (gluten), Corn, Eggs, and I believe soy. Cheri is right, organic whole foods are best. I don't know what you are capable of doing financially, but a good place to start is with avoiding MSG as much as possible, High Fructose Corn Syrup, nitrates and food dyes. Just doing this should give you some relief.

Have you tested him for Celiac? Low growth rate is a classic sign in pediatric cases. My son was underweight and short for his age (And mommy is 5'9) before diagnosis. Is he anemic? That is another sign. Also, dental enamel issues can be another. Your dentist should know. Many say that dentists are the best doctors for discovering pediatric cases of celiac based on basic dental exams. I have to stress that in our case the candida diet was not as successful as the gluten free diet in the long run. We did not use Nystatin. We did use Threelac. We did not use oreganol at the time, but have used it since to keep him from catching the cold going around our house (it works). Our son had a tremendous growth spurt after going gluten free. He is much taller and his coloring is much better. He is still on the skinny side compared to his younger brother who does not have the celiac gene. If you look at the SCD diet it is very similar to what we did. We avoided all grains except rice, which is not allowed on the SCD diet. We also avoided peanut butter, chocolate, egg yolks (as per his IgG test results), and various other fruits. We fed him potatoes (which is not allowed on SCD diet, but he did not test intolerant to). We did not feed him any sweetener unless it was honey. He had shakes every morning and still does that were a combination of goat milk kefir, fruit, and natural calm magnesium. I was consistent. That's the main thing. We did it in the spring and summer months which made eating fresh fruit and veggies easier. I made him a lot of salads and he learned new eating habits. I made natural freeze pops from real fruit juice with no added sugar. I was really basic and he ate the same things over and over until he got better. I took about nine months total. Now he eats a more varied diet and does eat sweets (homemade stuff and never refined sugar or iodized salt). I feed him stuff I make with evaporated cane juice (looks like sugar) or honey. I add MUCH less than what the average person does. I don't know what symptoms your son has/had, but my son's gastro symptoms were pretty bad prior to the diet. He had frequent loose watery stools and occasional creamy colored and foul smelling diarrhea. He used to pass undigested foods in his stools quite frequently. He was always sick with something too. Ear infections, croup, sinus issues, irritability, sleeplessness.

I hate to be the bearer of bad news, but all of the above, really. Restaurant food will be chemically laden. I know you are 20, right? So going out is a big part of your lifestyle. I would highly suggest you cut back for a few weeks to see if the chemicals are affecting you and how severely. Once your system is given enough time to 'detox' from the chemicals you will better be able to sort out what you can tolerate. Everyone is different. Have you ever heard of the Feingold organization? They put together all kinds of information on foods for chemically sensitive people. The organization asks for $100 donation and then they will mail you all kinds of useful information about safe foods, restaurant listings, etc... You can even join the email list and get regular email updates. When we go out to eat with my son I usually feed him good before we leave the house. I also make sure to bring my own ketchup, mayo, mustard (he has a corn allergy too), and then I carefully order from the menu. We have been most lucky with Olive Garden. We order off their gluten free menu. We have used Benadryl when he has had exposure. It works, but as Cheri pointed out, the diet works best.

Oops! All the big tic triggers that Cheri mentioned are in McDonalds, and all fast foods! High fructose Corn syrup is really nasty and in store bought breads and buns and all pop unless it is passover and you happen to live in an urban area. I agree with Bonnie, you just have to read a lot and take it one step at a time. Try to eat whole foods as often as possible, especially before going out with your friends. This way you will be less tempted to eat fast food and get a bad reaction.

Kathy, Yes, we eliminated dairy. Now we rotate it in and use enzymes every time he eats dairy. Our original diet was very restrictive. I commited to six months before I was going to just quit and go the medicine route. Well, after six months he was doing so much better that I prolonged it. I did start to rotate in some sweets after six months. By nine months he was doing fantastic. It is a long slow recovery process if in fact you are dealing with leaky gut issues. Your son is going to need a lot of support. I suggest you look into POCHA in your area and talk to the school nurse about a support group at school. He may find a friend with a peanut allergy that he can bond with while going through all this. Your whole family is going to need a lot of education and support. If everyone bands together you can do this and he will hopefully make a good recovery. Definitely get the lab tests done, though, to really help figure out what is going on. I'm not sure if your doctor practices the Dan protocol or not. We had all our testing done with a Dan doc. You want to make sure that the symptoms are not related to other factors-- heavy metals, viral/bacterial issues, candidasis. You may have to work with a variety of cures at one time-- candida and allergy issues. I have always had my suspicions about yeast die off with my son. We did the candida diet first through a naturopath who did not do any testing. We saw what could have been considered 'die off' symptoms but without proper testing, who knows? It may have been allergy related spikes. The candida diet allowed fermented foods and they contained corn (a food my son is highly reactive to). So I just don't know. By the time we did the testing for candida it did not register (four months later). He had fluctuating symptoms but was much better on the candida diet than previously. Now he is stable. An exposure to an allergen will cause very slight under-the-radar symptoms. His gut is healed finally and he is growing great and very happy, well adjusted. The kids at school are very supportive and so is the teacher. We just don't make food an issue. We did do a formal 'intro and explanation' to the class at the very beginning of the year. I used a storybook about a child with celiac and read it to the class. Then we all discussed it. Everyone wanted allergies after that- LOL. It was very beneficial to my son and he has a lot of really great classmates that look out for him now.

I noticed you wrote "wheat free". You may need to do gluten free. Neck ticcing has been reported in folks with gluten issues. My son exhibited neck ticcing way, way, back when we did not understand the difference between being wheat free and gluten free. He also had facial grimaces and other multifocal tics that were really scary for my husband and I to watch. After going gluten free we never saw another multifocal ticcing episode again. The neck tic we experienced was a nodding, turning thing that had about three methodical movements. I am not sure what your son's is like. The chemical free diet is excellent as well and we also do Feingold in addition to the gluten and corn-free diet. I uploaded a PDF brochure to my blog a while back where a similar case was discussed. It was an 11 year old boy with a neck tic. He had an aunt with celiac. Just click on the link and then click on the title to download or view the PDF file from my blog. http://healthy-family.org/caryn/289/pediat...-celiac-disease If this link doesn't work you can access the PDF from the Article: http://healthy-family.org/caryn/289 under the info provided about Dr. Bruce Roseman, M.D. Oh, and one more thing-- About the antibiotics, they may have had gluten in them. It is possible that this could have caused an increase in ticcing if your son is undiagnosed Celiac. There are other things that could cause this as well, and yeast issues may have something to do with it. I don't know what kind of testing you have done or plan to do. Celiac testing requires daily ingestion of gluten for 30 days for an accurate positive reading. Otherwise the patient could get a false negative. Again, this may not be the issue in your case. It is the exception more than the norm, I would think. I am just giving you info based on my personal experience from the Celiac standpoint. The good news is, my son is doing great now, without any relapse. Our two-year anniversary will be this spring.

I wrote a post and summary. I own the book by Sheila Rogers and we used it to 'cure' our son. http://healthy-family.org/caryn/1197 Anyone interested in going, let me know. I am thinking about it. Cost is $195 for family members and I believe $249 for physicians if you register by March 1.

The corn refiner's association put out a rebuttal. I did a little research on caustic soda and discovered that although there are some plants that produce a mercury version of it, not all do. Also, the mercury laden version is more economical. If you read the CRA's rebuttal you will see that they don't definitively state that all their HFCS is made with mercury free caustic soda. Regardless of how old the data is, I firmly believe that the HFCS on American grocery shelves still has mercury. I say buyer beware.

We did not use nystatin. We used natural treatments. I started with Threelac and a candida diet. I do use sweeteners but never refined sugar or any artificial or corn sweeteners. I avoided them though (except honey) for almost six months. I think for use it was the gluten and corn free diet over a long period of time that did it. We use kefir now and have for a while. Before the diet and after many courses of antibiotics he started having frequent episodes of undigested foods in his stools. He had a lot of diarrhea. He had episodes of frothy, cream colored stools that were very foul smelling. He had stomach pains and had very frequent burping problems that were pretty obvious and were not associated with immediate after eating burps. They were continual, hours after eating. He just seemed like his body was frementing and brewing something all the time. He had a huge, hard swollen belly a lot. Now all is well. He has a flat tummy and normal stools. He has no digestive issues and never passes undigested food. No foul odors, etc... I believe that candida can easily return. I am always conscious about keeping it in check. We do let him eat sweets. I also incorporate foods known to curb candida too. I have read alot about the SCD diet but have never followed it to the letter. I do use coconut milk, coconut oil, garlic, etc.... I also use only mild, natural antibiotics now when he gets congested (oreganol-- oregano oil in capsule form).

Just wanted to add a quick reply-- I don't have too much time this morning-- We have a similar history and did have leaky gut problems. Our son is stable now for 1 1/2 yrs. I think it takes a LONG time to heal the gut and you just have to be patient. Even if you think it is not working, don't stop. Give it at least 6-9 months, maybe longer. It is worth it. I read a study that confirmed most kids will tic 4 weeks after being exposed to a virus. We saw that pattern ourselves. Also, we have used milk thistle. It is not harmful. Liver detox issues are a part of it in our case, even now. We keep the diet as chemical free as possible and it works. We are also strictly gluten and corn free. If your child has a food intolerance (VERY common with leaky gut issues-- they go hand in hand)-- you may need to investigate the supps. Could have a culprit there. For example, some milk thistle products have corn-based byproducts in them, etc.... our story is here: http://healthy-family.org/caryn/289 The good news is that when his gut healed his multiple allergies seemed to lessen over time. (He had 17 at the start). Now we only avoid gluten, corn, and wheat. Caryn

Start with the more 'common' first steps (avoid artificial stuff, chemicals in food, etc.... High Fructose Corn Syrup) before you take it to the next level (re: the diet). It may be that your child needs a special diet, but if you try to do it all at once and you get results you may never know what worked. I was very anxious about it in the beginning and jumped into all kinds of different treatments, one right after the other, some concurrently-- desperately looking for an immediate 'quick fix'. I will tell you that the most important first steps are lab tests, for sure. We had tried several treatments from December 2006 until May 2007 before we finally had our IgG test results back that revealed our son's food allergies. An IgG test requires daily ingestion of the suspicious foods for a positive result, so if you jump the gun with the diet and then later decide you want to know 'for sure' (because, let's face it, having to make homemade from scratch cookies every time can get old after a while as opposed to buying a Pilsbury Dough Roll in the fridge section)-- you may actually get a false negative result on an allergen. When we tested we had already had our son on a dairy free diet for digestive reasons. He did not test allergic/intolerant to milk. Our family has a lot of lactose intolerant members so I took that info with a grain of salt and am very cautious with milk products. The best way to get a handle on what makes your child tic is to take it one step at a time. It is hard, I know, to let go of that initial anxiety. I will tell you that it does go away over time, especially when you find what 'works' for your particular situation.

Bonnie, Is his eyesight okay? He may need glasses. My ds will get headaches if he goes too long without eating but that is really rare (once in a wonder). Sometimes I pack him stuff for lunch that he doesn't like and then he will go hungry rather than eat it. Does he eat/drink caffeine? I try to stay away from it but whenever I do indulge I often get a 'rebound' headache that will last a few days when I go through 'caffeine withdrawal' and let me tell you, nothing-- no pain killer, head-on application, etc... will stop it until enough time passes. Just a few ideas. I noticed your post went unanswered.

Nose bleeds can be a sign of allergy. It is also a possible sign of anemia. Low iron stores might cause that. Has your son been tested for that sort of thing? My ds did have occasional nose bleeds before we found out he is celiac and needed to change his diet. What type of stuff was your son eating a lot of? Maybe that might give you an indication. If you think benadryl was helping and fast food (mostly filled with soy, corn, and wheat) triggered a flare up, I would consider allergy testing, specifically an IgG test. When my son gets an exposure we go for the benadryl and it always helps. He has allergy induced tics.

Amy, We have a child (will be 6 in a few days) that has greatly improved with a special diet. So I guess that would put us in the allergy category. I HIGHLY suggest you buy Sheila Rogers new book. (The host of this forum, actually.) That was the very first thing we did and it proved to be VERY beneficial. I have even joined the Latitudes Online paid subscription and have taken advantage of all the hard work they do in reading all the most recent research and reporting it for us. (All those scientific studies are costly if you wanted to buy them on your own.) The online subscription isn't necessary, but the book is. It gives you a complete overview of all the possible treatment routes you can take, including the kinds of testing you should do and what kind of doctors are best. I have a blog with specific info on allergies and I post safe foods and recipes. It is quite small, but if you think allergies might be contributing you are more than welcome to poke around there. Our story is at: http://healthy-family.org/caryn/289 and at: http://healthy-family.org/caryn/704

Lyn, I don't know how long it will take re: the fish oil, but I did look up the ingredients listing on your brand. Nothing shouted out at me from a food allergy standpoint (unless thyme is a problem) the ingredients are benign. So I wanted to just mention pyroluria, only because our Dan Doc told us that sometimes folks with pyroluria do very badly on fish oil supps. He said that they may be deficient in omega 6s and 9s and have a different sort of fatty acid imbalance. I just thought I would throw that out there. May mean nothing in your case. Our son was dxd with pyroluria and since his diet change it has sort of corrected itself (unless he goes under major stress). We are able to give him fish oil. I buy Nordic naturals 3,6,9. So for what it's worth--- Caryn

Lyn, There are many versions of benadryl in the states. We buy the dye free gel caps, as my son has a corn allergy and can't handle the liquid version (loaded with glycerin). The only ingredient besides the histamine is sorbitol (a corn derived sweetener) but it is in such a low amount that it doesn't bother him. Most antihistamines over the counter have artificial colors, etc.... It is very hard to get one that fits the bill. Methionine (amino acid) is also supposed to help lower histamine. We use that in the morning and benadryl at night when my son's allergies are flaring up. --Thanks Carolyn N for the wonderful explanations. Caryn

Abbe, Interesting about benadryl-- We use it too sometimes. Have you ever researched into 'high histamine', also known as Histadelia? Caryn

Lyn, An allergist usually tests for IgE allergies-- histamine reactions. The RAST test would measure this. This type of allergy produces stuffy noses, hives, anaphlyactic reactions and other typical allergy symptoms. We used an IgG test, which is a delayed food intolerance test and also chemical sensitivity test. This measures the white blood cell activity and looks for delayed responses rather than immediate ones. It is a different kettle of fish altogether and often times the RAST results and IgG results do not match up, so many Allergists are against the IgG and think it is unreliable. In our case the IgG broke the lid open and really helped us get a handle on things. This, because it revealed the Wheat and Corn intolerances that our son has (I call them allergies) and when we removed them (and 15 other minor allergies) our son's condition began to improve. It took 9 months before we saw a dramatic turnaround in him and he has been 'stable' now for 1 1/2 years without any episodes (save the one he had at the start of the school year when he was accidentally given 2 freezepops in one day with high fructose corn syrup in them). So I really believe in it. But, having said that, kids can and do tic for a variety of reasons so there is no guarantee that this is the answer in your case. We never did the IgE test but I am not against it. I may in fact get it done this year just to see where we are at. My son does have congestion in the spring and fall-- Caryn

Just thought I would add something from our experience with fish oil. Not all fish oil products are equal. We originally used Coreomega Fish Oil supps and our son's tics increased. Later when I learned that he has a corn allergy it made total sense to me as corn byproduct is in the formula in that brand. We now use Nordic Naturals with GREAT success. Thought I would post in case it is the brand in your situation or possibly 'other' ingredients and not the fish oil itself. Omegas are very important for brain function.

Just thought I would add something from our experience with fish oil. Not all fish oil products are equal. We originally used Coreomega Fish Oil supps and our son's tics increased. Later when I learned that he has a corn allergy it made total sense to me as corn byproduct is in the formula in that brand. We now use Nordic Naturals with GREAT success. Thought I would post in case it is the brand in your situation or possibly 'other' ingredients and not the fish oil itself. Omegas are very important for brain function.

Linda, Thought you might like to look at an article written by Dr. Scott Lewey, a gastroenterologist. He is much more liberal in his reasoning for proactively trying a gluten free diet despite a negative biopsy or blood test for celiac: Gluten Ataxia is a very real, research proven neurological disease that is directly related to non-celiac gluten intolerance. In time researchers may find many more neuro conditions that can be associated with NCGS. In our personal experience getting rid of gluten in our diets made a WORLD of difference for our son. Any child with a wheat allergy, in my opinion, should be given a trial gluten free diet to see if that wouldn't help resolve issues, as wheat avoidance is not the same as gluten avoidance. It can't hurt to try. It beats having to go to countless doctors every couple of months and paying heavy medical bills. We see our doctors for wellness visits now. That's about it. My son has been prescribed one antibiotic since changing his diet. He used to get 4 courses a year pretty much. He hasn't yet been absent from school this year with an illness. He used to miss up to a week at a time....

Pat, I've never done an OAT test, so I can't comment on that specifically. But I wanted to forward you a link from Celiac.com. The info there is pretty eye opening about how Celiac (an autoimmune disorder) can develop when there is a presence of gut bacteria coupled with a vitamin D deficiency-- in the article there are links and references to the possibility that this could lead to other autoimmune disorders as well (maybe PANDAS?) Anyway-- would be worth the read, I think. More Evidence Links Gut Bacteria to Celiac Disease I am certainly not suggesting Gaby has Celiac, but I wonder if you've had her tested for food intolerances? It is possible that the bacterial overgrowth has caused enzymatic dysfunction, thus leading to food intolerances which may improve when the gut flora is brought back into balance. (We originally had 17 allergies and now he can successfully eat all but wheat, gluten, and corn). We use enzymes almost daily and he also drinks Kefir. He is the healthiest of the bunch as far as his immunity goes these days. We never used antibiotics, so I can't comment on that. We did use probiotics with our son and although the recovery was slow and long I am happy to say he has been consistently better for over 1 1/2 years now. We have not seen an inkling of an OCD like behavior in over a year. (In the beginning he used to change clothes six times a day, after each trip to the toilet, and used to have repeat ritual phrases too. He also have sleep disturbance issues as well and had periods of what I called "cucko" time-- bouncing off the walls hyper.) Now he just seems like a normal kid to us. Caryn

We did the ALCAT IgG test, which was a blood draw and measures delayed food intolerances. I believe it was two vials but only one needle (he just quickly changed tubes). My son did not find it traumatic at age 4 but the experienced lab technician was very cagey about doing it from his own personal experience. I don't have any experience with the tongue test. Tell me more about it as you get info, sounds interesting. I have personally had the skin testing done (at the age of 22, and it was VERY uncomfortable for me-- and takes much longer than the blood draw). My back and arms erupted in major welts and I was very itchy afterwards. The skin tests are different than the IgG as they measure immediate histamine reactions. Some folks will test allergic on the IgG but not the IgE and vice versa. Some folks who have kids with tics see a benefit to using benadryl (which is an antihistamine, as you know), so there must be some merit to both tests. For us the IgG was the best test we did, as our son never had heavy metals and didn't need chelation. He simply had a severe case of gluten intolerance and corn allergy and suspected celiac. His symptoms slowly cleared up over time and now he maintains a tic free or very mild ticcing (after an exposure) that goes under the radar. He has no vocals and does not have multiple tics when he does get small exposures to his allergens. For example, he will just start a mild shoulder shrug that may occur a couple of times in the morning or at night for a couple of days and then it will subside. He is still very reactive to chemicals and so we keep him on the Feingold diet too (but we eat salicylates). Hope this helps.

Happy Holidays and Best wishes for Toys that don't make noise and easy to remove packaging with no more than three steps for assembly!!! Caryn

Char, It is possible that the malabsorption is directly related to the bacterium present in the intestines. Once that is cleared and the intestines are healed then the symptoms should improve. There are several studies about that. Celiac or gluten intolerance are only one reason for malabsorption. I have a friend with Crohn's. She was able to heal her intestines with a strict diet and continues to this day with a gluten free diet, not because of gluten intolerance, but to keep the Crohn's in remission. She was very bad at one time and needed surgery to remove parts of her bowel and has since been able to get pregnant and is healthy without meds. She was part of a study a couple of years ago and part of the protocol included no gluten, dairy, or refined sugar diet. I don't know all the specifics. There were other things she avoided too, and still does. So to answer your question, yes, I believe gluten can be a problem even if it does not present itself in an IgG test if there is a digestive disease present. Same goes for corn, really, or any grain. Once the intestines heal, though, I imagine that the person would be able to resume eating it unless they have complications, like for example from Crohn's. (Having said that, I am not suggesting that everyone with Crohn's needs to be gluten free.) I know Cheri's son also has it and he has his own protocol that has been successful for him. Caryn