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Casein and Tics


JennyC
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My daughter is almost three now, almost a year ago she started having tics which I didnt realize were tics at the time. This past summer she started blinking , shrugging, tics where her arms would go up in the air like she was shaking her sleeve down, tics where her arms would form a weird movement like she was conducting a band as well as leg jerks. I took her to the neurologist who diagnosed her with Chronic Multifocal Tic Disorder. He said she needed a vocal tic to have Tourettes...personally I think she does...quite often she will ask me a question and then repeat my answer a few times, he doesnt consider that a vocal tic though. She also has had severe constipation since she was 9 months old. Dark circles under her eyes as well.

 

A little over a month ago we took her to the gastro doc for constipation and he did allergy tests and gluten tests and all that fun stuff. It all came back negative but he said to try taking her off milk anyway. We did and within days her tics decreased! (her constipation is better too lol) The dark circles are gone from under her eyes and her behavior improved as well. Im guessing its the casein in the milk products so I would like to put her on a casein free diet. Do I eliminate all caesin from her diet...Ive heard that there are different types.

 

Next question...how on earth do you cook without dairy...almost every meal our family loves has dairy in it. What kind of substitutes are out there?

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Lots of kids seem to do better off casein. For some they can replace it with soy - although 30% with casein allergies also have soy allergies. Other alternatives are goats milk (which I cook with when needed) and almond milk - which the kids drink as a replacement to cows milk. We have also tried potato milk - who knew? - amazing what you find when you are looking. We use goats cheese mozarella for making pizza which the kids like.

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JennC,

I noticed you mentioned still considering gluten as a problem. Many celiac sufferers claim it is not uncommon to get false readings on tests or to get negatives one year and be positive the next. Enterolabs does genetic testing and many on the celiac forums that I belong to claim it is highly reliable for them and their families even though many mainstream doctors choose not to use it as a reason to go gluten free as they feel that a gluten free diet is too restricting. (Enterolabs is a more sensitive screen and results in more positives-- they use a stool sample). Celiac forum members will tell you that being gluten free is liberating and once they go gluten free and feel so much better they really don't care about the 'celiac dx' anymore. Many people I converse with on celiac forums never got satisfaction when trying to get the dx. They just finally decided to do it after years of weird symptoms and feeling crummy all the time.

 

In our house we are not completely casein free although we are definitely on a 'reduced' intake. We do a no corn, no gluten diet. I will notice a slight increase in tics when Tigger eats too much cheese (which he really likes) so I keep it to a minimum. When I did further research on the cheese/casein thing I learned that block cheeses are almost always sprinkled with corn starch prior to packaging in order to keep the cheese from sticking to the plastic wrap, so you see the causes for symptoms after dairy consumption can be multifaceted. IMHO I think that corn is a big instigator and unfortunately is more widespread in our modern diet than gluten. There is not much research on it either and it is not considered one of the big eight allergies. Corn is in most dairy products: cottage cheese, sour cream, dip mixes, yogurts, etc....

 

I want to throw this out there to help clarify for anyone who seems to get symptoms even after removing dairy, or for those who get symptoms from certain kinds of dairy more than others.

Our dairy free alternatives:

  1. Water and oil in baking (or applesauce-- works great with pancakes) Read up on your oils, not all are created equal.
  2. Rice Milk (we make sure ours is gluten free, some are not-- we also get plain as vanilla has corn alcohol usually)
  3. Almond milk (same on vanilla)
  4. We use spectrum palm oil in lieu of yucky margarine. It is solid at room temperature and works well in baking. (although you really need to flavor your crusts as they don't taste as good without that nice buttery flavor.)
  5. "Ghee (Clarified Butter) There is no casein in it. It is a great substance for greasing your pans.
     
    If you can afford a Vitamixer you can make your own almond milk. It is loads cheaper in the long run. It is best to use slivered almonds rather than whole ones but both work. Almond milk costs a fortune compared to cow's milk. Goat's milk is very expensive too where we live. Our Tigger used to drink it as a toddler when the doctor's told us they thought his problem was milk allergy. Turned out it was always gluten and never milk. Anyway, as he got older he really started to dislike the goat milk. It has a very strong odor and tastes much different than regular milk. Sheep cheese is much milder than goat cheese, if you can find it. You may want to inquire at European or middle eastern grocers.
     
    You may want to use lots of spices to help with flavor in your baking, and make sure that adequate fats and calcium are in the diet and that your daughter gets at least 15 minutes in the sun every day for vitamin D.
     
    Oh, one last thing-- Some people claim that they tolerate organic milk over regular and some claim that they can handle cultured dairy products over uncultured (if it is a corn problem then cultured butters are quite possibly a problem as they many times have corn derivatives). Some claim that non-hydrogenated milk is the only way to go. There are many opinions on the milk issue. Just thought I would throw this out there. I really don't have any strong opinions on these issues but I did do quite a bit of research on milk before we went gluten and corn free as I thought milk was the problem.
     
    Hope this helps.

Caryn

http://healthy-family.org

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Caryn,

 

Thank you so much for all that information! Is Casein found in goat cheese too?

 

I went to the books store and couldnt find one book on Casein free cooking (according to the computer at the store none have ever been published) but there were some on Casein Free/Gluten Free. This makes me think that they go hand in hand, sort of like if you do better without one you probably will do better without the other.

 

Does anyone here have a child that cant eat Casein but can eat Gluten

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There is no casein in goat's milk. There is lactose in goats milk though.

 

My son can tolerate some gluten - when he is sick we get strict with the diet - but when he is tic free he can tolerate some gluten - we now also allow diary for special occasions - pizza party's etc.

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JennyC,

Gluten intolerance is an hereditary condition in which the body does not produce an enzyme necessary to break down the gluten protein (the gluey stuff that makes breads and cakes so chewy and rubbery) found in many common grasses. It is more prevalent than earlier thought, compromising almost 10% of the total population according to Dr. Rodney Ford, a gastroenterologist from NZ. In the most extreme cases a condition called celiac's disease will develop. This disease was originally thought to be a disease of the gut but many researchers have recently discovered that there is a very solid gut-brain connection with gluten intolerance and that quite often the sufferer will have no gastrointestinal symptoms but will develop strange neurological problems (silent celiac). The basic premise is that the gluten wears down the lining of the small intestine and causes small holes to develop. Undigested proteins then leach into the bloodstream and begin to affect the brain. I find it curious that the same part of the brain that affects children with autism is the part that causes tics. Many parents of children suffering from autism have found success going gluten and casein free. Some have not. If you go to Celiac.com you will find several articles that summarize celiac studies. Extreme vitamin/mineral deficiencies are also common and result in the development of psychological conditions like schizophrenia (studies through pheiffer center have shown that 33% of schizophrenia sufferers are undiagnosed celiacs.) Pyroluria is another condition that can be corrected over time with a strict gf diet and supps (for gluten intolerance sufferers). Dr. Ford also claims that many gluten intolerance sufferers also acquire a sensitivity to milk (also a colloid, which means it has a glue-like constitution) but a strict gf diet will eliminate the milk and other allergies over an extended period--- years in most cases.

Many celiac sufferers go undiagnosed for years and years. Average age of dx is 40s. Many claim to have suffered neuro dysfunctions for years. (tingling in hands and feet, ataxia is a BIG one that has proved to be caused by gluten intolerance/celiac in medical studies.)Many (I won't say 'all') have claimed to be cured by going gf.

It is most common among the Irish, especially those that hail from the west coast of Ireland.

Although a person does not exhibit symptoms while eating low doses of gluten that does not mean that they are able to digest it properly. The best solution is to go completely gluten free for anyone with gluten intolerance issues, as it will always cause damage when ingested if you are genetically susceptible. If you are not gluten intolerant than there is no issue with gluten and you can eat it with gusto. And I am jealous of you! LOL

If you read some of my earlier posts you will see that I muse a bit about candida as I believe it plays a nasty role in this whole scenario. Candida is a fungus that secretes a toxic waste product in the body and is very hard to eliminate. It feeds off of yeasty breads and sugar. If a person is also gluten intolerant then the leaky gut can give the candida a good clear 'highway' to the brain, according to some.

Many parents on this forum give probiotics. We use Threelac. I believe that in our case candida and gluten were a major factor in our son's initial symptoms. (Heavy antibiotic use leads to the development of candida overgrowth and antibiotics are often prescribed more regularly for kids with gluten intolerance and on high gluten diets) They are susceptible to infections due to the inability to kick common colds, etc... My Tigger had many ear infections, croup bouts, and episodes when he had diarrhea and/or vomiting. Antibiotics strip the body of both good and bad bacteria. Good bacteria is necessary to fight candida overgrowth. Without it candida begins to spread. We all have candida in our guts. Overuse of antibiotics without probiotics can cause major gut problems over time. A sure sign gluten/candida is a factor is if you have a toddler who has frequent white, frothy and strong/extremely smelly diarrhea episodes (our Tigger would have them once every three to four weeks, usually coinciding a big weekend of celebrating with family). I call holidays the season of 'gluten merriment'. Distended abdomen is also a sign of intolerance, so can a very picky eater who often gags while eating foods with gluten (I am talking toddler here). I realize that this post digresses from the original topic. My apologies.

 

Hope this clarifies.

Caryn

 

P.S. I read in a recent study that antibody levels for gluten can vary among children, going up and down regardless of whether or not they are gluten free. This is very interesting and really proves the comment by ad_ccl:

My son can tolerate some gluten - when he is sick we get strict with the diet - but when he is tic free he can tolerate some gluten - we now also allow diary for special occasions - pizza party's etc.

what causes the antibody levels to rise and fall is a mystery, but it is possible that minimal amounts would cause no symptoms in some cases where the child's immune system is strengthened. I would want to add a disclaimer, however, that if you are gluten intolerant then your body cannot tolerate it even if you are apparently showing no symptoms. Increased ingestion will cause symptoms to resurface. But I agree with her that occasional ingestion of gluten in the child that is NOT CELIAC should not cause major distress. Celiacs, on the other hand can be sick and highly symptomatic for three or four days after a minute amount of gluten. I would not recommend regular gluten ingestion if you have a child that you suspect to be gluten intolerant. It is kind of like giving your three year old matches and saying, "now we don't want to start a fire."

As for me and my house---

We're Irish, and so we are definitely staying gluten free until we get genetic testing. Our Tigger tested gluten intolerant and with a wheat allergy. He did not test 'celiac'. I have a rule about wheat, corn and gluten. I never knowingly give it to him or let him have it at someone else's house. He knows this. In the beginning he would sneak the food. I never punished him for it. I only explained that it might make him tick, have diarrhea, feel sick, puke, etc... Now he doesn't touch the stuff because he knows that it makes him sick. He has no interest. He just turned four when we started with the diet. He will be five next month. I have learned a lot since the beginning of this whole process and what amazes me the most is how darn awesome a kid he is through it all.

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I am overwhelmed with all of the information so please excuse me if I repeat things or sound a bit flaky. Isa was tested for food allergies and celiac disease, she came up negative for all of them. Do those tests pick up on food sensitivities or just allergies? The doc just suggested that we take out dairy for her constipation, he said that the food allergy tests arent very accurate and the only way to see is just to take it away and see if it helps. It helped! ALOT.

 

Im wondering though as I said before if taking away gluten might help with some of her crazy impulsive behavior. Sometimes she gets on the couch and runs back and forth as fast as she can, she will flip off the end of it and land on her back and get back up and start running again. You cant stop her at all. She runs around the house like she is possessed. Its gotten better but at one point in time she would do it every day at about 5 PM. She also doesnt seem to understand some things Im telling her. I will tell her to do something and she will just stare at me. She wont potty train, she doesnt listen to us well. She tantrums.

 

I am 1/4+ Irish and my husband is 1/2 Irish.

 

But we are very very tight on money, can a family of 3 eat gluten free/casein free on $80 a week?

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Jenny C-

 

We have many similarities in the way our kids were postively effected by eliminating casein. The results for us were dramatic and his tics were greatly reduced in a week. he also had dark circles and constipation issues which also cleared. In addition to going CF and reduced gluten, we also implemented Feingold (cuts out the dyes and icky preservatives).

 

As far as cookbooks, you might want to try your local library. I came home with a pile of books. Most of the cookbooks I found were both casein and gluten free. my favorite was by Dana Laake - The Kid-Friendly ADHD and Autism Cookbook: the Ultimate Giude to GFCF Diet. It also includes some information/explanation on why the diet works and why some kids can not tolerate casein and gluten.

 

Because so many products that are CF are also GF, my son also has a greatly reduced GF diet.

 

I cook mostly with Almond Milk and my son likes the vanilla flavored for drinking and make most foods from scratch. I've used the cookbook above.

 

There are many different types of allergy tests, so depending on which type you had done may determine the accuracy of what showed up for you. We had done a scratch test and my son did not show a true milk allergy.

 

As far as $$, our grocery bills did go up when we first eliminated milk products because I was experimenting with new products. However, now our bills are about the same because we have cut out ALL of the processed food and sweets, which is expensive. The results have been well worth it for us.

 

Good luck!

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Just this morning I did look up the books at the library, the only one they had is actually the one that you mentioned. I requested it (its at a different library) Im looking foward to all the info.

 

Isa's constipation has cleared up but she is also on medicine for that. Im wondering if maybe going gluten free will help that too.

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JennyC,

I agree with Q'smom--A feingold diet is a good way to start. just look at http://www.feingold.org/

There is a membership fee and with it you get several books and an updated list of safe products that are preservative and additive free. If you can't afford to join, just start by getting rid of petroleum based products when you cook (margarines and cooking sprays like Pam) and trying to give your daughter whole foods, home cooked meals from scratch. Keep it simple and repeat your recipes until you get comfortable. Most cereals contain BHT and BHA and must be avoided. (Kelloggs). Many families get results without going gluten and casein free. Start there if you feel gluten is not a problem, otherwise you will overwhelm yourself. If you are still worried about gluten then you should be careful with your labels, first looking for products listed as gluten free or by becoming familiar with ingredient labels. Basically you buy products with only ingredients listed that you can pronounce (LOL) and know what they are. Look for organic products when affordable and available. (Costco is great). Also, avoid artificial sugars and sugars in general. Keep it simple. Put all natural unsweetened applesauce in your all natural oatmeal and add loads of cinnamon. Buy whole chickens and whole turkeys and utilize all parts, saving the drippings to make your own gravies from scratch. Buy only what you can eat in four days. I found I had less spoilage when I shopped twice a week.

Get a cheap min prep food processor if you don't already have one (15 bucks at walmart) and use it to make apple sauce, pear sauce, chicken salad, etc... Buy in bulk when there are great sales. If you don't already, get a deep freezer. (Ask your relatives, you may find one that doesn't utilize theirs).

 

Feingold claims that many kids are sensitive to not only petroleum based products and preservatives like sodium benzoate, food colors like red dye #40 and yellow dye #5 (tartrazine), but also can be sensitive to fruits high in salicylates like red grapes, oranges, and apples. First omit the chemicals and serve only whole foods cooked fresh at home, then worry about the fruits. If you still have concerns worry about the gluten. We saw very similar behaviors with Tigger. He got better and better with each step we took, and finally when we got rid of gluten we saw tremendous results.

 

Gluten free does not have to mean buying all kinds of special bread mixes and alternative cookies, etc.... When we first started I kept the diet simple and made a lot of crockpot dishes in bulk, freezing the leftovers and re-serving them. (Beef stews, chicken soups, spaghetties, etc....) Eventually I did purchase a few brands that I liked and have gotten comfortable with our routine now. GF can be expensive if you are not frugal. I found the mixes to be more economical than going from scratch. We don't use them as staples, and that is key. I shop around for stores with the best prices.

 

Above all else, good vitamin supplements are well worth the investment, and can help with symptoms and mood, especially when allergies/intolerances often strip the body of vital nutrients from the food, or the child lacks in absorption abilities do to low enzyme production or poor diet. Nordic Naturals fish oil, non-synthetic vitamins (from health food store or whole foods) high in B's, especially B6, adequate vit C, E, and zinc are all beneficial for most of these kids. Magnesium is also important and usually lacking in multi vits. Many here use magnesium taurate. You probably would want to consult your doctor about doses as your daughter is young.

 

Hope this helps,

Caryn

P.S. I just wanted to add that we had a delayed food intolerance test done called the Alcat. It showed delayed food sensitivities and not immediate allergies such as a rast test. It measures the white blood cells. I found it to be very accurate and am glad we did it.

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  • 2 weeks later...

The basic premise is that the gluten wears down the lining of the small intestine and causes small holes to develop.

 

 

I hope I am posting this correctly.....i'm trying to quote just one sentence of a previous post by Caryn. Does anyone know if there is a test that would prove one had these small holes in their intestines? I don't know medical stuff much, but would an MRI or CT or something be able to confirm that?

Also, to test for a gluten intolerance......am I correct in understanding it is done through an IgG blood test?

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