Caryn

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!)

Tracy, The thing that stuck out for me is the fact that the tics stopped after a fever and no food for a few days. Could have several reasons, I'm sure, but one thing that is very common about food intolerances is that it takes about three days for the offending food to clear the system. This might account for the cessation of tics after the illness. Have you done IgG or any type of food log? Sorry if I'm not familiar with your situation. I pop in and out and sometimes forget. Something to definitely think about. Triggers are specific to each kid but one thing many of us have in common is food intolerances as triggers (beyond the Feingold chemical avoidances). Caryn

Cheri, Very promising! I have read similar studies about the ability of the brain to repair itself after the celiac goes gluten free. It is great to know that our brains have the capacity to heal given the right elements. Potential Link Between Celiac Disease And Cognitive Decline Discovered By Mayo Clinic Many scientists and physicians believe that the only time to go gluten free for cognitive decline is when the patient has a diagnosis for celiac disease. Heck, if it were me I would do it anyway just to see if it improved my symptoms! I have been reading a bit lately about the 'caveman' diet. I am starting to think that is the way to go.... anti-inflammatory, more dense nutrients, naturally low in sugar, etc, etc, etc....

Myrose, Did you say you checked for food intolerances/allergies? Chronic sinus problems are definitely a sign of allergy/intolerance. I had nasal surgery about 13 years ago. Your daughter's symptoms sound similar to mine. I got to the point that I could not lay down on the couch or my nose would get immediately stuffed. I had a polypectomy and the doctor also widened my sinus cavity and corrected a deviated septum (crooked nose). I was then put on steroids long term to help with inflammation and to also assist with allergy symptoms. I then did the allergy shots for a year afterwards. I then quite the steroids and went on allergy meds. Claritin gave me headaches, so I then began to have sinus problems again. Funny thing, my nose was never stuffed after the surgery, but I still was having sinus pressure and sinus infections, though not as frequent. During that time I was constantly pregnant or nursing so I was told to use natural remedies: alphalfa capsules, etc.... The doc put me on a high protein/high fruit and veggie/low grain diet and I improved. Then my son developed his tic disorder and we did the IgG test. I went gluten free with him and now have not had sinus problems since a year ago in January when I had a bout of flu that turned into laryngitis, then morphed into strep. I will let you all know if my usual hay fever symptoms start up again this spring. So far I have none but we are having a late spring here. Just something to think about. Caryn

Thank you Maryann! I always wondered how one could get in touch with her! Caryn

Pamela, Funny thing, Tigger resumed bed wetting on Trienza too! We have it in reserves in the cabinet but are strictly doing the diet now. My experiment over the Easter holiday was less than perfect. I think the enzymes in moderation are best for our situation. They do help keep him from getting sick to his stomach after dining (gluten free) at a restaurant. Caryn

Maryann, I don't know if it is true, but I will tell you that was my son's symptoms all the time before we changed his diet. It is a weird, sort of spontaneous belching that went on even hours after eating or drinking anything. It was almost a hiccup like belch, not a loud, long lasting belch as what you would expect after drinking pop. Anyway, he also used to poop undigested food (corn especially) and had frothy poops frequently. He also has a major issue with corn. The belching could be celiac/gluten intolerance, but could be due to corn or something else. I agree it is the food, though. Caryn

Patty, here is Irish Stew..... (It is an allergy friendly version, but I don't think that matters, tastes the same to me). 1 1/2 lbs of chopped lamb or beef (cubed)-- my hubby loves the lamb. I prefer the beef. 1/4 cup of gluten-free flour (I used Betty Hageman’s recipe: 2 parts white rice flour, 2/3 part potato starch, 1/3 part tapioca flour) you could also use corn starch if you are not corn-free, or use arrowroot starch if you are and don't have any gluten free flours around. Could also use regular white flour if you don't have gluten issues, of course! Oh, and almost forgot-- in a jam? Just take a cooked boiled potato and mash it, then put it in the pot. Works like a charm! 3 cups of carrots peeled and sliced 1 celery stalk 1/2 teaspoon of white pepper 2 teaspoons of sea salt (regular table salt if you are not corn-free is fine) 1 bay leaf 1 teaspoon basil 1 tablespoon parsley 1 medium onion, chopped 1 medium diced parsnip (about 1 cup) Place your meat on the bottom of a 2 quart crock pot. Add enough warm water to cover the meat completely. Then add the GF flour mix (or corn starch, or arrowroot starch, or wheat flour). Stir until the mix is completely dissolved and there are no lumps. Add the seasoning and vegetables. Mix well. Set on high and cook a minimum of 6 hours. If your stew seems a bit runny before serving, just empty out 1 1/2 to 2 cups of broth and let it cool. Mix it with 3-4 tablespoons of additional flour mix and bring it to a slow boil in a saucepan until it thickens. Add to stew. Makes 6-8 adult-sized portions.

When I was pregnant my G.P.'s midwife told me that alfalpha capsules were good for that. It helped a lot. I have always been a stuffy, drippy, congested mess, my whole life from the time I was very young. Supposedly going GF should help that (so I have been told). I will let you all know this spring how we all do as a family. (It has been a year now, so this would be the true test......)

I don't want to rock the boat, but the same can be said for celiac/gluten sensitive enteropathy and OCD symptoms, behavioral issues, ADHD symptoms. The gliadin antibodies fluctuate in the child who has the condition and is eating gluten regularly. It will spike and recede. There are many clinical papers about issues with gliadin antibodies and psychiatric symptoms, especially schizophrenia. This is why I chose not to put my child on long term antibiotics. I agree with Chemar. Antibiotics are NOT for every child who tics.

For those with comorbid OCD and ADHD symptoms-- I want to preface by saying that the dx for celiac disease is evolving and in the future may not require intestinal flattening of the villi. There is much evidence to point to the fact that in adolescent cases there may be NO gastrointestinal symptoms at all. So let's just look at this from the standpoint of genetically 'gluten intolerant' and with neurological symptoms. I think too many people put too much stock in the gastrointestinal aspect of diagnosis and miss the fact that the neuro can be corrected through a gluten free diet even if the child is NOT dxd celiac through a biopsy. Just MHO. Found this scientific study very interesting: http://www.biomedcentral.com/1471-244X/5/14 Gluten-free diet may alleviate depressive and behavioural symptoms in adolescents with coeliac disease: a prospective follow-up case-series study

C.P., I hear ya! [big hug] We saw the tics come back too after being tic free for three months. We over-used the enzymes, I think, and ate out too much. Lots of stuff was going on: the excitement of the holidays, a visiting uncle, a week off of school.... some dietary infractions.... Maybe it will be short lived and it is just a little excitement/anxiety that will wind down soon? It is frustrating to see them come back when you work so hard to keep them away. Sometimes the momxiety is worse than the tics themselves! Caryn

Just wanted to add what I found today: (my apologies if someone else has already brought this up) found it here: http://www.healingdaily.com/oral-chelation...-what-it-is.htm Just thought I would inform in case anyone is planning to supplement on their own w/o a Dan doc or anything.

I hear ya! I keep saying that everyday is a holiday at our house because that is how it feels-- like I am entertaining! Over the year I have learned to do a couple of things to help cut down the work: I make huge batches of whatever and store excess in the fridge or freezer (meatloaf and meatballs store in the freezer fantastically) On the days that I go to Costco I semi prepare my dishes for the week. (For example I buy the bulk fresh fish and portion them out. Some I bread with almond meal, some I just season.) Certain foods I will actually store in glass containers (pyrex) so that I can thaw and cook in them, all the one, and save on bags. (like my 1/2 cooked Lasagna. I will bake it 45 mins and then cool it and freeze it for future). I taught my 3 year old to peel veggies: potatoes, carrots, etc.... This REALLY cuts down on time for me and keeps him out of trouble LOL. I got into the habit of making dinner in the morning in the slow cooker, that way I only use one pot and can come and go without worrying about my stove being on. (I found this is actually better for the kids too. We either eat a second helping at dinner time or eat 'light'. I use canning jars in the freezer instead of plastic bags for some things. I don't yet know how to can and someone who does suggested I try that. I rinse dishes immediately after use. I found that the slow cooker usually needs to steep a while, otherwise I clean up the pots while the kids set the table. (Tip I got from a woman who homeschools--- she put all her dishes in a lower cabinet for her little ones to easily access and taught them to set, clear, scrape, and load her dishwasher. Mine don't load, or the stuff would be everywhere, but I do have them stack on my counter. Once a week we have leftovers and hubby takes care of reheating, serving, and cleaning up.

Faith, I assumed she meant celiac specifically, as her son is celiac. I will double check that. She said she gave enzymes without gluten, as a 'just in case' security measure for her son (much like I am experimenting with). We are not purposefully ordering foods with gluten when we eat out, mainly because we don't know if our son is only gluten intolerant or if he is undiagnosed celiac. I am assuming he is getting what celiac's consider 'cross contamination'-- minute amounts of gluten from cooking surfaces and utensils handling glutenous foods before his is handled, or undeclared amounts in seasonings or spices. We can't forget that Tigger is also intolerant to corn and that corn ingestion could be part of the equation too. He did wet the bed again, too after Sunday. FWIW. Caryn The upside is he had a great time and didn't get sick to his stomach afterwards or have bad diarrhea, so that is a success in itself for me, even if the result is 'less than perfect over the long haul as far as anxiety and bed wetting issues, etc.... I will keep an eye on it in time to see if there is a pattern. I too think sugar has something to do with it for some reason, as does milk in our experience.

Pamela, A good confidant told me a couple months back that she had heard from several families of celiac kids with autism spectrum disorders that the enzymes actually made them more neurologically symptomatic than before the enzymes. I have no personal experience with this. I did buy Trienza and have used it sparingly for eating out. He has had them five times in three weeks. (I have only given them at the start of any meal he has eaten when we go out.) We ate out twice on Easter Sunday and he had very high anxiety that night. He was quite fidgety and quite hyper. That was the only time he had enzymes twice in one day and we ate 'seemingly' gluten and corn free fare. It made me nervous to say the least, but whether it was the holiday in general, eating restaurant grade food as opposed to the organics we eat at home, or the enzymes themselves I don't know. He is back to himself today and hasn't had questionable food or enzymes since then. This hasn't dissuaded me from using them again, but I am taking mental notes and will look for a pattern. I was warned that the enzymes are not a magic pill, and so I will keep my eyes open and fingers crossed. The good news is that he did NOT have any of his typical gastro or digestive issues (explosive diarrhea or puking) as he had before the enzymes when he ate out. Caryn

Hope, I can't answer that question. Faith had the testing done too, and I believe she is from N.Y. Maybe she will pipe in. But if you are looking for testing covered by your insurance maybe you should check out Enterolabs if you run into problems getting the okay for an IgG test by your doctor. They have a gluten/casein test that you could try. Ask your ped or possibly see about getting in to a ped gastroenterologist on the basis of his stomach complaints. We purchased our test through our chiropractor but Alcat will sell the test to the general public w/o a prescriptio (and they are not the only company) . The only thing is that it is not covered under the insurance w/o a doctor's order. Both tests have similar fees. Enterolabs offers a genetic test as well (more chance for a positive dx), while Alcat screens for up to 150 foods and environmental allergens (more bang for the buck). For us the IgG was the key to everything. Our son stabilized with the new allergen friendly diet. He is now tic free since just after Christmas. I don't even need mega doses of vits anymore. I am so glad we did it. Caryn

Hope, If he burps a lot, if his throat itches, if he has skin rashes, if it hurts when he eliminates (pain in intestines, like a low ache-- unrelated to actually 'pushing' to get the movement out, but a physical pain of having something in there) then I would suspect it is a food intolerance, definitely. I would recommend IgG blood allergy/intolerance testing if you can afford it. I also wanted to mention that if you are giving him high vit doses that this too can upset the stomache. But if the pain is also in the colon and there are problems of loose and hard stools then there is something more that you need to get to the bottom of. If you can't afford an IgG test, try a high fiber diet (fresh fruit and veggie) and cut out the milk and grains for at least 5 days. If he improves then you may be on to something. Reintro the dairy first and wait for a response. Then reintro the grains, one at a time to see if there is a response. This is the best way to get to the bottom of a hunch. They call this an elimination diet. It isn't 100% foolproof but it helps to pin point what might be giving that tummy an ache. Caryn

What is he eating? What other symptoms does he have? How long does the pain last? What are his bowel movements like? How often does he have them?

Be very careful with the soy. It is a common allergen as well and hard for many kids to digest, especially with casein and/or gluten sensitivities. I just want to caution you on the soy as I know you haven't yet done any IgG testing. She may seem fine for a while and then all of a sudden start to develop symptoms from it, especially if you are using it as a staple food. This article is an eye opener: http://www.westonaprice.org/soy/index.html Choose healthy whole foods as snacks. You can't go wrong! Grapes, apples, peaches. Make sure your food choices are substantial and not empty processed foods that will fill her up so that she is not hungry for healthier choices. Grill up chicken and cut it into little strips. She could eat them cold or you could reheat them. We reconstitute all our leftovers. I have turned it into an art form of sorts. More later-- Off to church! Caryn

That is very interesting documentation. Had you also tested your son for allergies, environmental or food related? I have a friend in holistic therapy who taught me about ph levels long before I knew anything about our son's dx, etc... Her husband is 6 years after his liver transplant and he is off all anti rejection medications by simply eating a low acidic ph diet and taking certain supplements to help boost his new liver's function. He looks fantastic, better than he has his whole life. (low acidic is pretty darn close to vegetarian, I believe, and vegetarian with low starch I think). Anyway, she and her husband don't touch pork with a ten foot pole. They really focus on what they eat eats. If anyone is interested on ph levels of food I found this site: http://home.bluegrass.net/~jclark/alkaline_foods.htm also, my friend told me that you could buy ph strips either online or at a health food store to do urine samples. We did that way back when and our ds was acidic. My friend said that is not unusual as most Americans are, based on diet. I should dig them out again, just to see. Now if only I can remember where I put them.

Our TJ does NOT have the GF bread selection you mentioned (I am assuming you mean fresh?). I find more luck with that at WF, especially with pizza crusts, etc.... having said that, other TJs stock up on other things. So I agree, it is best to call first. Jenny, Go to both if you can. Some places (Like Evanston) the two are within a short distance of each other (like one mile). In other areas you've got to travel 10 miles. I totally agree on the rice milk. STOCK UP! It is sooo cheap.

Your skin is your biggest organ, and eczema has been a well documented allergic response to an allergen, especially food (milk, wheat, egg, soy) are common culprits. We have dealt a lot with eczema (two of our three boys) and have not seen any since changing our oldest son's diet, dx'd with the chronic tic disorder, to suit his IgG test results--in short, no wheat, no corn, minimal dairy. ....Those wonderful Irish genes again!!! Our son's tics IMHO are directly related to his allergens. We have not had any ticcing since after Christmas, after almost a year on the allergy friendly diet. It couldn't hurt to get some testing done, esp. since the tics present with eczema and there is a history of allergies in the family. The tics may not go away 100% but you may get substantial relief with diet.

JennyC, We buy rice milk at Trader Joes, most gluten free/corn free/ additive free staples at Whole Foods (better for Feingold IMHO), and buy our bulk organics at Costco. We also get non-organic meats at Costco as they are better quality. Trader Joe's has a gluten free list. Don't know about dairy free, but ask. Whole foods does concierge. I am assuming you are doing more than just casein free? Just ask for help when you get to the store. Many good supplements can be bought at Whole Foods, but you can also buy online at a better discount in some cases. Which way are you coming in? We are in Chicago area. I have been to many Whole Foods stores. Some are better than others. Same goes with Trader Joes. Caryn

Here is Tigger's original list from last March: red (eliminate): corn---still cannot eat, and the depths are pretty deep (no citric acid, no corn sugars, no corn proteins, no corn starches, etc....) wheat---still cannot eat (and this includes any and all gluten grains: rye, contaminated oat, barley, spelt, triticale, duram, etc...) orange (avoid): cantaloupe--- (I don't like them so I never buy them) cherry---(If it is in a product he eats it (ie: Larabars) cocoa--- (just not on the menu most days but he will get it for a special occasion in low doses. ie: chocolate cake for his brother's birthday) egg yolk--- eats some part of egg almost every day now. Probably not a good idea? Doesn't seem to be a problem right now. hops--- Well, when he is 21 we'll have that talk.... or 18? or 16? Oh, don't want to think about that right now. oat--- He eats this on rotation. Maybe once a week. He loves oatmeal. I buy a gluten free brand. pineapple---don't eat them because of salicylate issues. Just got out of the habit. Before the IgG he was addicted to them. yellow (limit): barley--- part of the gluten thing brewer's yeast---Same as the hops.... date--- Not on the menu. Prepared dates often have additives and preservatives, so they are out. mustard--- he eats this probably once every four days or so. I don't keep track. It is not on the menu most days. (We buy whole kids--it is the only corn free one) olive--- one of three or four oil varieties I rotate. No strict schedule. I just got into the habit of intermixing stuff. peanut---he gets this less than once every four days. It is not in his repertoire of favorites. If his playmates ask for P.B. on their gluten free bread when they are here (;>) then he has to have it too. pear---he eats them no problem. For the longest time I avoided them but now he gets them. spinach---he eats it cooked and raw. Not a problem now. squash---he eats zucchini, spaghetti squash, yellow squash, pumpkin, butternut, no problem. Did I say 17? My bad. Looks like 18 here. Well, it is not like he is drinking beer anyway. LOL.