overwhelmed with diet- is it worth it?

[patty]

Tom's mom,

 

Have you tried Kid's Calm for your son? If he is constipated, the magnesium citrate may help with his tics as well as his constipation. It is important to keep the bowel moving as it can help remove old toxins and rid the intestines of waste.

 

Since your son has such a clear correlation between food & tics, you may consider treating him with NAET, an allergy desensitized treatment that is noninvasive and no supplements. It may not completely eliminate his food allergies but it will help raise his tolerance level. As we all know, it is so hard to do food avoidance for a long time for a child. Another form of energy treatment is NMT that i heard from this forum is quite effective.

 

My son was treated with NAET, and i am able to give him food that he was tested sensitive based on the IGg test and muscle test. But i give it to him in moderation. It sure make his and our lives so much easier.

 

May you have a happy, safe and peaceful Thanksgiving!

 

Patty

[itsme]

Hi Caryn,

 

Quick question, you said you did the bontech vits ... did you stop taking them? If so why? we are taking them and are having them good success - not sure i ever want to stop!!

 

Thanks

[Caryn]

We had our ds formally tested with an extensive CBC and hair analysis to find out what exactly his imbalances were. Then we had a special supplement compounded for his specific needs. We used to take 8-10 Bontech vits a day to stop the tics. Our new compound is only 4 vits a day, two in the am and two in the pm. What I specifically noticed with our ds is that once his body became more balanced over time (five months) through diet, the vits were no longer needed to keep the tics at bay. The only time we see tics and experience bed wetting is when there is a dietary infraction, and it usually lasts up to four days, depending on the amount eaten and whether or not it included artificial ingredients. Now Tigger does not live in a perfect world so there will be days when he is exposed to foods that he needs to avoid. I wish the diet were easier to keep when we leave the house, but unless I put a shirt on him that says "don't feed me I have allergies" people are going to give him things that are not on the approval list. We can't change the world around us. Just Sunday he had been given three chocolate candies at a recital by an assistant that dh and I were unaware of. He told the girl that he couldn't have wheat. She figured, well, this is milk chocolate, it must be okay.

Unless you are a celiac you just don't get it. The measures a celiac has to go through to keep the diet pure are pretty great. Today he has had no vits and he has no tics. Nothing. It has been nearly a week since he had the candies.

Caryn

[Chemar]

yes, as Caryn has elaborated, people with celiac disease, or even just gluten intolerance, see a dramatic improvement in their overall health and wellbeing once they remove the offending foods from their diet. this would also mean better absorption of nutrients and therefore less deficiencies of vitamins, minerals etc. Instead of the gut fighting the allergen all the time, it can function optimally.

 

However, for those who are NOT celiac or gluten intolerant....please dont think you can just cut out gluten and not need to give supplements anymore etc and that this will therefore bring tic relief

 

It can never be stressed enough that this board represents *MANY* different types of tic disorders and there are therefore varied root causes for those tics, and equally varied methods of treatment...

 

The unifying theme seems to be to clean up diet (and/or environment) of anything that is problematic, and supplement deficiencies *as needed*

This is where specific testing plays such an important role in directing correct treatment

 

Cheri

[Caryn]

"It can never be stressed enough that this board represents *MANY* different types of tic disorders and there are therefore varied root causes for those tics, and equally varied methods of treatment...

 

The unifying theme seems to be to clean up diet (and/or environment) of anything that is problematic, and supplement deficiencies *as needed*

This is where

specific testing

plays such an important role in directing

correct treatment"

 

Yes, Chemar--

I agree wholeheartedly with your statement. While celiac disease has been scientifically proven to cause neurological problems for children it is NOT the only cause. This is why adequate testing should always be done and why I can't stress enough the need for lab testing by a medical doctor to determine adequate supplementation. In our case we are also dealing with pyroluria, a possible offshoot of the celiac issue (I say celiac, but again I have to stress that we did not get a proper dx because we went gluten free before getting any lab testing done and thus were unable to test for damage to the intestines.) While I may have skipped the vitamins on a particular day to determine causation, I have not eliminated the supplements all together. My goal is to inform parents of possible causes when all other treatments do not seem to alleviate symptoms then a gluten free diet is an option. I would by no means start there. It is a last resort. I also post this info in the hopes that parents who suspect their child may be celiac based on similarities they find with their child and mine, (as I have posted previously), will seek a dx prior to doing any type of dietary changes. This was a gross error on our part. The celiac dx is difficult to obtain, and is grossly different than a wheat allergy or intolerance that can be outgrown. It is an autoimmune disorder in its own right, and many docs are now reporting that it is neurological in nature. But like I said before in a previous post, there is no definitive correlation between tics and celiac's disease at the moment. I believe this is because tics/TS have MULTIPLE causes just like Chemar pointed out.

Thanks Chemar for bringing this up.

Caryn

[Toms_Mom]

Caryn,

Thanks for your response- it really helps to hear from someone who has dealt with the food allergies, done the rotation diet and had success- that is very encouraging. Now I am more motivated to stick it out with the diet. The main thing I am having a hard time with is rotating the flours- rice seems to be in every baking and pancake mix, in all the gluten free recipes and store bought breads etc.

 

My son was sensitive to wheat, rye and oat- though rye and oats were low with a IgG of 1. So I am not sure if he is gluten intolerant or whether he will be able to rotate it in eventually- I certainly hope so.

 

We are giving Kirkman probiotics and I am still not sure about the vitamins though he seems to be doing well (light or no tics) when he has not had any reactive foods. I am worried that he isn't getting enough calcium with no dairy products allowed and thinking of ordering the bontech just to make sure he is getting everything he needs. I just don't think it would be necessary to give 8-10 a day.

 

Patty, I did look up a NAET practitioner for our area a while back after reading about your success with it, and there was only one and her address was a home so I just wasn't sure. If I had a good recommendation for one I would be more likely to try it (We live in South Carolina).I was giving him Kids calm but then stopped because it didn't seem to be helping with the tics anymore(maybe I was wrong) but I was also worried because i wasn't giving him a calcium supp. I get so confused with all the different options for supplements.

 

Digestive enzymes- we are still giving them and hope they will help with dietary infractions like you mentioned with the candy- it is amazing how much junk they give out at schools, games and even CCD(religious classes)- it seems like snacks are required at every child-centered event- I never remember it being that way when we were growing up. We had one Christmas party at school and that was it.

 

Again, thank you all for your responses. You are all such a blessing to me.

[Caryn]

Bob's red mill uses a lot of bean based flours. IMO they have a stronger taste that isn't always as easy for a kid to enjoy. Check out their website and consider looking at Amazon.com because they sell in bulk. Sorghum is also a good alternative flour. It does not have that heavy bean taste. I found a company that sells it online. I have not ordered yet. I am happy using Pamela's mixes with sorghum (and rice). Bette Hageman has tons of recipes for gf flour mixes. You may be able to get some online. You could experiment and make a huge batch of your own mix and freeze individual bags of bread mix. We get all our gf flours through amazon and belong to their super saver club. I know what you mean about treats at school. At our son's school each parent gives a 'bag' of goodies for holiday parties rather than just one treat. I became a room mom and as part of my role I suggested we give both edible and non-edible gifts. It worked beautifully. Although you can't change everybody, you certainly can help to 'put the word out'. Everybody was really receptive and I tried not to come across as 'well this is bad for all our kids and I think we shouldn't allow candy'. Instead I just discussed the issue of allergies from the perspective of all the parents at the school dealing with allergies--peanut or wheat, milk, or otherwise. I just mentioned that parents of allergy suffering kids have to take away treats after the party and that the younger kids usually get very upset when they end up with no treats. Many moms gave awesome gifts: stickers, pencils, coloring pages/books, plastic erasers, rings, spinning tops, cards.

If your son can have some gluten-containing flours it 'sounds' like it is a wheat intolerance issue and 'not' celiac. But don't take my word for it. In our case we plan to retest my son after one year to see where he stands. I also learned that sometimes a test will give a false negative if the offending food is not eaten prior to the testing. I decided to error on the side of caution.

Do you belong to a celiac forum? Even if you don't believe your son is celiac they are a wonderful resource for GF recipes and products. I have learned so much from so many people on these forums.

Some of our new staples are:

1. fresh fruit on the table at all times
   
2. maple syrup in lieu of corn syrup and refined sugar
   
3. simply orange brand orange juice
   
4. finely chopped or pureed veggies in our regular meal recipes (ie: inside the meatballs or in the lasagna)
   
5. enjoy life snack foods
   
6. larabars
   
7. fruitabu
   

Certain foods other than milk are high in calcium. I believe you can buy Simply Orange with added calcium. Almonds, Amarath flour (can buy it in cereal form at Whole Foods or health food store) Broccoli (I puree and add to a dish at dinner time), buckwheat-- a nice hot cereal for breakfast (which is NOT the same as wheat and does not have gluten), beans (so it would be in your bean flours), among others....

Most kids with TS or tics have a magnesium deficiency problem and calcium competes with magnesium. In the very beginning I was giving my son a vitamin supplement with added calcium and no magnesium. He was eating a diet high in calcium and wheat, and subsequently became even more deficient in magnesium. The trick is to keep a balance. Our doc suggested we give a cal/mag supplement at night if we felt our son did not get adequate calcium that day. I like to limit milk intake for a variety of reasons (as a matter of fact my son doesn't drink it-- it is only cooked in some recipes), so these are some alternatives that have worked for my son. For you the most important thing to learn right now is all the hidden names of all your son's allergic grains. This is where a celiac forum will be most helpful. They have taught me so much about food labels and terms.

[Toms_Mom]

Caryn,

I wanted to thank you for all your great advice! I bought the gluten-free gormet bakes bread and the gluten free gormet comfort foods at Barnes and Noble. I also got the lara bars, fruit a bu and simply orange w/calcium. Don't know why I never noticed the lara bars in my many hours scouring the shelves of Whole Foods. It's great to have more things available to pack in the lunch box- that seems to be a struggle - trying to find snacks besides fruit and nuts. But hopefully I will find some good recipes I can start making him from scratch from the cookbooks.

 

He just got invited to a b-day party this weekend and it feels so wierd trying to explain to people about his allergies. For instance, she said they would have pizza and cake and I told her my son was allergic to milk and I could send something for him to eat and she said oh no you don't have to do that - we'll just have chicken nuggets instead (which will have corn and milk in the breading) People will just keep asking what can I make or bring for him and it is so hard to try to explain there is really nothing you can bring except fruit and even then we are on a rotation diet and it really depends what day it is. I guess I just feel unsure about the whole thing and I wish I were more confident in explaining to people what we are doing. I don't know anyone or have never met anyone who has had a child allergic to things besides peanuts. And I really wish I didn't have to explain things to people outside family and close friends.

 

Anyway, I have added the kids calm back in and am looking for a hypoallergic multivitamin w/o the manganese. I guess I should start with that before moving up to the Bonnies( if needed)

 

Thanks again,

Mary

[Caryn]

Mary,

I'm glad some of the food ideas worked out for you. We just went to a party at burger king last friday. I fed Tigger dinner before we left. He abstained from the meal when each of the kids were getting their snack boxes. I brought homemade brownies by Namaste and we pigged out on them while the other kids were eating cupcakes. Don't worry about the other parents and what they think. It shows great love to do what we are all doing and that much comes through. The other moms are going to naturally want to feed him. That's what moms do. They will also feel bad when they hear that he can't eat any kind of junk. I don't explain too much because unless you are really in tuned to it like we all are there is really no way to communicate exactly what we are doing in a simple way. I used to just say that Tigger was allergic to wheat and corn-- that pretty much eliminated everything anyway.

 

After a while, when he starts to really heal his gut he will not want the junk. As a matter of fact he will probably get to the point where he is afraid to eat it. My Tigger did not want to sit with the other kids during the meal. I kept cajoling him to sit with his friends, but finally he confided in me that he was afraid he would 'breath in their food.' He was afraid to even smell it! I tried to explain to him that there was nothing to worry about as long as he didn't eat it. Well, his best friend in the class soon came over to him the the two boys had a great time talking about Transformers and all was forgotten. Evan ate his cupcake and Tigger ate his brownies. Tigger had a great time at the party and aside from the 10 minutes spent eating, food was never an issue.

 

You've got to try Namaste Brownies if your son can have chocolate and eggs. They are dairy free, and I believe you can use an egg replacer (but check the box). Namaste is a good brand as far as GF mixes go. Also check out the Allergygrocer.com (Miss Roben's) they have a search engine that will display foods according to the multiple allergens you check off. Miss Robens is only online, but they deliver fast and have some really great baking mixes, etc.... (She sells powdered sugar made without corn that is perfect for frosting).

 

I have food reviews on several products we have come across over the last 6 months on my blog. If you haven't already, check it out: http://healthy-family.org

I even found pop at Whole Foods that is okay for Tigger. He got a can on Thanksgiving and was over the moon about it. (I told him it was only for Holidays). Now he asks me every day how long until the next holiday?

 

I know what you mean about all the restrictions. I too want to make food less of an issue for Tigger-- make it so that he doesn't feel so deprived of it. His preschool teacher is actually Celiac and she has been a great supporter. She gave me the best piece of wisdom on it. She said I shouldn't be so focused on what he can't have. He is so young that he will never crave the things that I am craving for him to have.

 

Caryn

[patty]

Tom's mom,

 

I too, also feed my son before going to a party. Also, i always bring snacks or food with me everywhere we go and extra for his friends to share so he does not feel different. Most of the time, his friends like our snack more!

 

I tell everyone my son has multiple allergies, and i never have any problems with someone feeding him. I don't get into details because i am always with him and have food with me. Of course with the exception of while he is in school.

 

I agreed with Caryn, if your child start with good eating habits, he starts to develope a taste bud for good wholesome food and do not want junk as much. For example, my son ask to eat school lunch pizza. He ate it and said it didn't taste good and asked me to bring the good pizza for him at lunch.

 

As i have already mentioned, i am able to allow various food in moderation without problems after treating with NAET. The only thing that i avoid as much as possible is anything artificial or preservatives.

 

Pat

[Toms_Mom]

Thanks Patty and Caryn- I appreciate all the advice you have given me- it really helps to hear from people who have been through it- I am just going to tell people he has multiple allergies when it comes up and not worry so much about it. I'm looking into the miss. robens etc. and hopefully once I order everything and find new recipes we can get into some sort of a routine which will make it all easier. Love your blog Caryn - you have some really good info on there and I want to try some of your recipes!

Thanks,

Mary

[faith]

Just want to add another way to avoid having to explain things, because even if you say allergies, then they'll start asking you "what" will happen if he has it? (Not so much people you encounter once, but those parents of friends that he is around alot). ... Too hard to explain when its not a true allergy, but intolerance.

 

One time we were at Burger King and I pulled out my organic ketchup bottle, and the other mom said "Don't tell me -- he only likes Heinz ketchup, right?" So that gave me the idea to just say (if they notice) that "he'll only eat (fill in brand or whatever food) ! Just act like they're picky, or that your kid is too thin and you want to make sure he eats good food over junk. For dairy, you could allude to "stomach/bathroom" problems.

 

Faith