Caryn

Kim, Midway into the restriction diet Tigger was VERY reactive neurologically when he had gluten ingestion. Over time that changed and now he usually has only gastro issues. He basically either pukes or has explosive diarrhea. I have read and had learned from other celiacs that it is not uncommon for the 'recovering' person to be more reactive to gluten than the one that is continually eating it. I just found an article that discussed that very mystery. It has something to do with the addictive relationship that allergy sufferers have with their allergens. Haven't pieced it all together myself yet. Will get back to you on that. I am confused myself about the switch in symptoms, however I will say that prior to the tics he had episodes of vomiting and explosive diarrhea.... periods of infections that required antibiotics..... All the one? Who knows? Tami, We did not test allergic/intolerant to milk. We had been doing a dairy reduced diet for quite some time at that point (he was on goat milk for the longest time) because of a suspected cow milk intolerance from infancy (I was told to go off of cow dairy while nursing). I don't know if this changed his results to reflect a false negative or not, but I read somewhere on a celiac site that it is a very good idea to limit dairy when initially going gluten free as dairy can aggravate the gut. Many celiacs initially go dairy free until their guts heal and then they reintroduce it. We have never eliminated cow dairy 100%, but Tigger does not drink milk. I try to use Ghee instead of butter for him whenever possible. He still eats cheese (minimal amounts on a rotating schedule and only those that are corn free). He can have about 1/4 cup of Kefir every day without issue (I mix it with a corn-free all natural fresh juice). He does not take Kefir every day at the moment. If I have it, otherwise not. I will dig out his list of allergens and post that later, if I have time. Peanuts and Oats were on it. He can eat certified gluten free oats no problem now and he loves them. We just started that about a month ago. He also had stuff like spinach and pears. He eats those too. I will look it up-- I'm sure Betty especially will be curious. Betty, Before I forget-- Definitely the vitamins helped in the early stages to saturate his tissues and help his little body regain the nutrient levels it needed. We worked with a DAN doc. to get a compounded script after all our testing. We soon discovered over time that the vits we starting to make him feel nauseated. We were told that that can happen after a dietary change so we were delighted when we took him off the vits and he maintained his recovery level no problem. We have not seen a wax on since going gluten free, just a slow, steady wane over many months. We did see a stubborn nose scrunch that seemed to carry on for a few months but that too has waned. Our biggest problem now is corn (it's in everything), and I am pretty confident that corn makes him grind his teeth still at times. I am not sure if it is an itchy feeling in his mouth? It usually occurs immediately after ingestion. I then do a quick inventory of the food and often start calling manufacturers. Sure enough I discover corn hidden somewhere 99% of the time. (As a citric acid wash to keep meat from browning, as an ingredient in packaging, as a polish on fresh fruit). Betty, check out Food Allergy Kitchen. It is a yahoo group. They have been very helpful to me this past year.

Yes Kim, great point. Lower cholesterol is also something that is often seen among undiagnosed celiacs. I just don't want Betty to get even more freaked out. Once her son starts eating right for his allergic needs these things will correct themselves. The tests in general are not 100% accurate, but I think it is safe to assume the eggs, milk, corn, and wheat are contributing to his overall problems-- just from my own personal experience with this. We had to cut out corn, wheat, eggs, and greatly reduced the milk (only once every four days or so, and never a 'glass of milk'. Tigger survived. It healed his gut. Now it can do the job it was intended to do-- digest food and nurture the body. Low cholesterol and albumin levels may reflect malabsorption and malnutrition. See the following study for more information: http://www.blackwell-synergy.com/doi/abs/1...41.1999.01225.x Many things straighten themselves over time once the celiac goes gluten free. It is hard to know whether or not Betty's son is indeed celiac. I am not a doc, but these are signs that may point to a possible cause and should be considered if she wants to get to the bottom of things and go for further testing. We never did that with Tigger. At one time I was sorry we didn't. Now I really don't care anymore because he is so happy and healthy being a normal 5 year old. Don't ever want to go back now. Don't need the test. Don't care. We just went to his 5 year check up with our doc and he has grown almost 2 1/2 inches since the dx last year and has gained 6 pounds. You all don't know how fantastic that is to us--- his almost two year's younger brother was often mistaken for a twin. Healing will come in time. It will take a long time, but it will happen. And like I said before, we now eat everything in rotation except the two biggies: wheat and corn. So of the 17 allergies he is now down to 2. Caryn

Betty, One more thing-- I found a good journal article from the official Journal of the American Academy of Pediatrics that addresses the nutrition needs of children with multiple food allergies. it is a PDF file so you could download it and print it out and refer to it regularly as you get your feet wet, so to speak. http://healthy-family.org/forum/index.php?topic=42.0 Hope this helps! Caryn

Hi Betty, I'm sure your head is spinning right now. I tried to organize your allergen list by food type.

Sure. I don't mind. I'm not sure which video, but feel free to post!

Kelly, Please don't diagnose my child over the internet.

We do not consider ourselves a PANDAS case. I just want to point that out. Yes he had the chicken pox vax along with the Hep B vax about six weeks before we saw behavioral problems at school. Within three months we saw our first sniffing tic, and then an eruption of tics over the holidays that never waned until we went gluten free. I need to clarify this fact because I feel that every person signing on to this board lately is heading directly toward a PANDAS diagnosis without considering that there could be a multitude of reasons for the rise in symptoms and onset of the condition. I'm sorry, but not strep titers in my mind means no PANDAS. Let's not forget that this is a clinical diagnosis. A doctor's best guess at that. The antibiotics work in many cases. Yes, that is obvious. Why do. they work? Why aren't we asking that question? Why are these kids getting neurological complications when being subjected to normal childhood illnesses? What is it about their IMMUNE SYSTEM in general that is causing the outburst and breaking down their little bodies? This is why I can't stress it enough. Look at the food you are feeding your child, the toxic soaps and lotions they are lathering on their bodies, the fact that genetically speaking 10% of the population cannot eat wheat because they are celiac. Upwards to 30% are in someway intolerant. Enter the GMO food factor here, the high sugar diet, the MSG issue, etc.... Ugh. I just am exhausted trying to explain myself. We are not PANDAS. Our child is functioning normally and has no symptoms since after Christmas. We eat according to his gluten and corn free needs. We have never used antibiotics to treat our son. We quite certainly may have gone down that road, we almost did. His titers came back normal and his blood work showed he had been fighting an infection. Let food be your medicine. Candida is an evil thing to have growing in the body. Constant use of antibiotics will not kill candida

Judy, Please have a food intolerance panel done. I can't stress this enough, especially since your grandson has been diagnosed with Lupus, which is statistically shown to be caused by gluten sensitive enteropathy/celiac disease. Something caused his immune system to weaken, prior to the vaccine. If his food is not digestible because he doesn't have proper enzyme capabilities, then it is creating antibodies in his blood. Antibiotics will not cure a food intolerance.

Tami, Swollen Lymph nodes are a common problem when a celiac is exposed to gluten (or any other allergen/toxin). I hear many talk about that on the forums I visit. It is an immunological response, like you said. If you think this may be due to something he recently ate, do a little investigating. I go to a special dietary shop that is owned by a woman suffering from celiac disease and she claims that there are some 'gluten free' products that are not produced in a dedicated gluten-free facility and thus can cause reactions in very sensitive people. Just something to think about. For instance, Lundberg rice is okay, but their rice noodles have caused reactions in a handful of her customers. The noodles are produced in a separate facility on shared equipment. Tigger threw up after eating peanut butter at my parent's house last weekend. Two hours later he was running around my yard, completely fine. Apparently the peanut butter had traces of gluten in it from the last time my dad made a sandwich. He may have recently been exposed to something viral that is going around too. Vitamin E and zinc are both good for swollen lymph nodes. BTW, I get them all the time now when I get 'glutened'. It is a sure fire way for me to know. On the bright side, the gluten free diet is working. He's better! That is quite a relief!-- as time passes you may find that he will become less hypersensitive. I keep getting reassured by other celiacs that the gluten sensitivity will not be so pronounced after the body is given ample time to heal. His antibody levels are probably still very high. They will fluctuate. I am still waiting for that myself with Tigger. Caryn

We use ChildLife with our two younger boys. This is a liquid vit that does not taste bad. (Toddler will take it directly off of the dropper and not diluted). It is listed as corn and gluten free but does contain citric acid and fructose (two known possible corn derivatives). www.childlife.net With Tigger we use pharmax brand vits. They have a Multivitamin & Mineral (Child Formula) With DHA - 120 Capsules My dh and I also use pharmax (adult version without copper and iron). We are all doing gluten free now and that was suggested to us by our doc. http://www.amazon.com/Pharmax-Multivitamin...0296&sr=1-4 The vits come in capsules and my son age 5 can swallow them whole like a champ and chase them with a glass of water. Caryn

The B vitamins are all excellent for neurological support. B6 has been shown to particularly assist with tics. A good multi is not a bad idea if you are giving elevated levels of B6 separately. Too much b6 over the long haul may cause heightened phenol sensitivities. We personally saw this and then I did a bit of research and discovered the connection. Zinc is very important for pyroluria. (And not present in Bonnie's vits). You need a proper blood test to determine if pyroluria exists (I wrote about it on my blog: http://healthy-family.org/caryn/63). We had a pyroluria dx (mild) that has since corrected itself with a gluten and corn free low sugar and veggie rich diet. (I'm hiding the stuff in all my food! LOL, from meatballs to pancakes). Good diet is better than vits. But initially, at least in our case, the vits were essential to help manage the tics. We did Bonnie's vits with great success. When we got the pyroluria dx we switched to a compounded vit with the zinc included. Too much zinc is toxic to the body so be sure you have advice from a nutritionist/naturopath/Dan Doc, especially with a younger child. Pyroluria requires more than the RDA in zinc for success (and saturation of tissues). Caryn

If your eldest son has ulcerative colitis you may want to get him and the younger one screened for gluten intolerance/celiac disease if you haven't already. Our ds recovered with a gluten and corn free low sugar diet. He had many digestive issues.

Hi Betty, Does she also have a red ring around her anus? Eczema? Itchy skin? Diarrhea? How is she sleeping? Our ds had dark circles under his eyes before we changed his diet. He also had signs of candida too. As far as eating allergens, when our son ate foods he was sensitive to he would initially have a wax on that would last about 4 days before it would wane. We learned through an IgG test that his main allergies were wheat and corn and gluten intolerance. We removed all three and it took nearly five months before we stopped seeing ticcing wax ons with accidental ingestion. We have also learned quite a bit about hidden sources of his allergens and have gotten into a groove with our meals, snacks, and have learned how to eat when we are out. I cannot remember a definite correlation between the dark circles and the tics or the circles and the foods. It has been a while. I do know that his complexion did not improve until he was on the vitamins for two months. I suspect that the dark circles may have something to do with malabsorption in regards to either an allergen or candida? Once the gut begins to mend the dark circles (and watery looking eyes in our ds's case) seemed to disappear. He also had a very pale, anemic complexion and that also improved in time. I hope this helps. Caryn

For anyone using a gluten free, corn free, dairy free, soy free diet and looking for something special to do to celebrate St. Paddy's day! http://healthy-family.org/caryn/422 (You will see the pancakes pictured with Pamela's Baking and Pancake mix which contains nuts and buttermilk. You can use any mix you want though. Another poster on my blog (Elaine) has reviewed a few mixes that contain corn but are GFCF. Of course you could also use your own recipe too!)

Hi, welcome-- check to see if he is gluten intolerant.

Mary, I was pointed to this article by someone on my celiac forum: http://www.celiac.com/articles/1124/1/Heli...ents/Page1.html Hope it helps. Many claim the H pylori celiac connection is a chicken and egg scenario. What came first? What caused what? At any rate, celiacs with H pylori, it appears, can get a missed dx on the celiac according to this article. I hope this helps. H pylori does not mean celiac, but it is best to get tested to rule it out at this point. Caryn

Molybdeum (hope I spelled that right?) is supposed to be good for candida die off. It helps the body eliminate the toxic overload produced by the candida. Our doc prescribed it in our son's compounded vits last summer. Too much treatment too fast will cause a surge in symptoms. A slow die off is better.

Michele, Does he think your son has bipolar disorder or schizophrenia?

I remember having many a bad day like that with Tigger before we made all our dietary changes. He had done a few whoppers in his first year at preschool. Once he pushed a boy onto the tile floor during potty time. Thankfully the boy did not get hurt. Then a weird thing happened when we talked afterwards (with the teacher). As a matter of fact my son laughed and it was so strange. I was so embarrassed and felt so helpless, out of control, and like such a failure at that moment. This was during the height of his ticcing and behavioral issues. At that time he used to have daily meltdowns and often told me that "he was going to be naughty" even when there didn't appear to be just cause. It was like there was this urge within him to release tensions. He never meant to purposely hurt others, but he was so darn impulsive that he just kept finding himself in precarious situations. I will tell you this, when we changed his diet the boy changed. His teacher will attest to that. She told me four months later that he was a completely different kid. It did not happen overnight, but the change over that four months was dramatic, too dramatic to say he had 'just matured'. Things that I read later really pointed to possible causations: inappropriate laughter could be a phenol/salicylate issue anger outbursts/irritability could point to pyroluria compulsions/'hearing voices telling you to do something' may be tied to a gut imbalance.... Our son had some strange compulsions when he was at his worst, and they were scary. These behaviors faded and have never returned since we started his diet and stuck to it 'religiously' for nearly a year. Our son had 'sore throats' last year and was tested for Strep antibodies but his results were normal. We never did go the PANDAS route after that although his presentation was very similar to what many PANDAS parents discuss here. He had a sudden onset of symptoms and they slowly waxed on until he was unable to attend school for two weeks last winter. This year no one knows he was diagnosed with a chronic tic disorder. No one knows he struggled with ADHD symptoms or had behavioral problems. If you haven't already looked into IgG testing it may be a good option. If you are not sure if the PANDAS dx fits your case then maybe you should look at food allergies as a culprit. I hope this helps. I know the desperation you feel. I've been there. It can and does get better. This is the hardest part, figuring it out. Caryn

The only food my son eats on a regular basis is pizza. (Tigger was that way too, prior to the IgG. As a matter of fact, the last 'worst' wax on occurred during a pizza party at our church last St. Paddy's day.) He is a pretty good eater and will try all vegetables I put in front of him. He is partial to carrots, peas, zucchini, sweet potatoes, tomatoes, broccoli, and even eats spinach if I cut it into slivers and mix it with rice or orzo pasta. (That is great). We have never been the type of family that ate doritos or ring dings. (Neither were we. The worst I ever went were goldfish back then were to give him goldfish or cheerios, graham crackers). My son has NEVER had a Twinkie in his whole 9 years. (Neither Tigger, and he doesn't even know what pop/soda is or tastes like). I allowed hot dogs and deli meats with the nitrates. (Me too, back then). I've switched us over to nitrate free meats and I now buy Blue Sky or Hansen's sodas. I have not tried dairy free for him but he's not a milk drinker, never was. (Dairy proteins are in a slew of things) He gets his calcium from cheese and yogurt and supplementation, and sometimes Breyers ice cream. I still have a 1/2 gallon of milk sitting in the fridge that's over a week expired and it's 1/2 full. No one in this house drinks milk very much and we don't even add it to our teas or coffee. He's also not a huge peanut butter eater, either. Right now I've got him hooked on my BLT sandwiches, I make them with the Applegate Farms bacon. I think he was just happy that I was allowing him to have bacon! Also, my son doesn't have the allergic shiners, no mood swings (he's the most level kid you'll meet), he's never tired during the day and sleeps like a rock at night. I'm really looking forward to getting him allergy tested to see if I can get some answers but right now I'm trying to put aside the money for it! Does/did he have problems with bed wetting? If pizza brings on added tics it sounds like a trial GFCF diet may be worth the risk. It can't hurt. Sodas and pizza are sugary and pizza of course is yeasty. He may have a problem with candida that would be helped by a GFCF low sugar diet. Just a thought. You could try it for a couple weeks to see if it makes a kink in the tics at all before you invest in the IgG testing. (I know it is costly.)

Excellent point, Faith.

Have you done a candida test? Some parents find success with a more restrictive diet. (For example we went gluten, corn, low sugar, and casein reduced). For us that was not quite as restrictive as the Specific Carbohydrate Diet. Have you tried digestive enzymes? Our son presented with mild OCD and had no elevated strep titers, although his bloodwork showed he was fighting off an infection. Do you think the symptoms are related to a vaccine?

Have you ever tried the GFCF (gluten-free casein-free) diet?

Have you done any IgG testing or candida testing? For us it helped to have something to rely on as 'evidence' when we started our food restrictions. We did not get noticeable positive results for quite some time, either. The changes were ever so gradual over time. I agree with Chemar that a journal would best benefit you and your son. What does he eat a lot of? Crave? Start there with possible triggers. Let him eat them with gusto and then see if he tics more. Then give him three days of complete avoidance and see if there is a wane in tics. Do not try to take away everything at once. I agree with Chemar that this will cause resistance. Have you reduced the sugars? Vinegars? Fungals (mushrooms, peanut butter)? If he is eating a lot of processed stuff and has candida issues it may be contributing. Also, does your son eat fruits and veggies? Before you eliminate stuff like wheat, milk, and corn by-products it would be good if he had an established habit of grabbing, say, an apple or banana at snack time, or perhaps was willing to sample some broccoli or peas at dinner. When you decide to cut out a food like say, milk, you could begin the process by giving him a glass of say half milk and half rice milk until he welcomes the taste changes. Over time he will accept the new food/drink and may even prefer it. (Tigger hates the taste of real milk now) Gluten issues often times will bloat the tummy and cause a child to develop a poor appetite. Food allergies/intolerances usually present with dark circles under the eyes, mood swings, tiredness, tummy ache, headache, and in more severe cases, a poor complexion or a 'washed out' face. Honestly, we did do different elimination diets and nothing really worked for Tigger until we had proper testing done.... and then STRICT adherence to the diet for almost a year. Like Chemar mentioned, to heal the gut it takes time and patience. For us it helped Tigger that we all went on his diet together, even Daddy. This took away that feeling of restriction, at least at home. Caryn

Hi All, As the next wave of candy-filled holidays approach I want to send off a warning about vanillin. Do not be fooled by this imitation impostor! * I am a member of the Feingold Organization and this is a small section of my latest newsletter. Always look for real vanilla in anything you buy! And if you are dealing with a corn allergy, I hate to break it to you, but even real vanilla can be a problem. We use it in our baked goods w/o a problem, but many corn allergy sufferers cannot. The alcohol in commercial vanilla is derived from corn. Real vanilla beans is just fine though, if you want to add that to your drinks and ice creams, etc..... (we do that ourselves).