Is anyone doing a Rotation Diet? Does it work?

[Caryn]

Hello all,

We have just begun an elimination diet for our four year old son. He has been ticking since January (blinking, head nodding, teeth grinding, sniffing, lip licking, grimacing, etc...). It wasn't until after we got the Alcat results back and discovered what he really was intolerant to that his ticks waned. He is currently not ticking at all (for about 1 week)-- three weeks into the Alcat elimination diet. We have him on a no wheat, no corn, no egg yolks, no dye, no preservative diet at the moment. He did not test celiac, and he can have milk--which was a surprise to us. New diet is expensive!!! Love the organic food, just not the prices.

This is all so new to us. I would love to believe we have conquered the beast, but I know that this is probably far from over. According to the Alcat, we can reintroduce offending foods after six months on a once-every four days rotation basis. Does anyone have any experience with this? My husband thinks that the offending foods may always cause a reaction-- even six months from now. I know that is probably true for the dyes and preservatives (Thanks to Kim's response from an earlier post), which we have eliminated completely from the entire family diet. What about foods like wheat, corn, and eggs? Also, Faith had posted a while back that the Alcat has an 80 percent accuracy rate. What might be inaccurate? Has anyone gone back and had another allergy test done a year later? Did the results come back the same or different? I would appreciate anyone's thoughts here. Also, I am looking for a good doctor in the Chicago area that can help us long term. (Do I want a DAN doctor? I have heard so many talk about them in this forum).

[Chemar]

welcome Caryn

 

Carolyn has been using the rotation diet with success so she would be one to give you good input on this when she checks in

[Guest]

Hi Caryn,

 

I'm glad to hear that your son has had such great results with the rotation diet. I don't have any experience with adding foods back in after 6 months of avoidance. I struggle with avoiding the foods so I've never gotten to the six months mark of avoidance. However, I've gotten off track of avoiding the foods many times. I can see the huge difference from when I'm avoiding the allergy foods to when I'm not avoiding them. Every individual is so unique on what works for their tics, but for those with food allergies/sensitivities avoiding the foods can often make a huge difference in my opinion.

 

I haven't used the Alcat test, but instead two other ones. Between the 1-2 years of food sensitivity testing, some food sensitivities stayed, some went away, and a bunch of new ones showed up.

 

As for Chicago DAN doctors, I've heard that Dr. Anju Usman is pretty good. She certainly seems to have a lot of knowledge as she's usually a speaker at the DAN conferences. However, she has a huge waiting list and is probably pretty pricey. I've also heard that she has a lot of patients and some are starting to get unhappy about that. For me having a doctor that will call you back when you have concerns is essential. So that's something to always check into because some don't and won't call you back if you have concerns. There's probably others in the Chicago area that are great, but none of the names sound familiar to me.

 

Carolyn

[kim]

Caryn,

 

I bumped a thread that will give you a lot of info in addition to what Carolyn provided.

 

Clair, is a name on that thread that you will see often. She did a lot of amazing work on this forum. She pops in once in a while.

I miss her, bet others do too.

 

It would be nice to see new responses added to the thread. That type of organized info gathering, is really important.

 

If you have any questions, that you don't find answers to, just ask again!

 

Kim

[faith]

Hi Caryn,

Not sure if I asked you before, but after how many days eliminating offending foods did you start to see improvement? Did you eliminate all at once, or one thing at a time?

 

Again, I'm thrilled to hear that,

 

Faith

[Caryn]

Hi Caryn,

Not sure if I asked you before, but after how many days eliminating offending foods did you start to see improvement? Did you eliminate all at once, or one thing at a time?

 

Again, I'm thrilled to hear that,

 

Faith

Faith,

It is our belief that Ian's main tick trigger is corn, and by that I think I mean processed corn products in particular. I wonder now if I give him regular corn on the cob six months from now if that would trigger ticking? I'm not sure. We began the elimination diet while visiting my in-laws, as that was where we were when we got the results back. We tried to eliminate as much as possible, but we never did a complete elimination as it was too hard (not my kitchen---too many corn and wheat eaters in the house) We saw a reduction in ticks while away, but Ian was NEVER tick free. When we got home I literally cleaned out the kitchen, gave bags of food away to my parents and brother and started from scratch. I researched good brands that we could buy that were both gluten and corn free (not an easy task) Namaste makes flour mixes. I gathered recipes off the web by doing searches with only the ingredients I listed. Then I had to relearn how to cook, and let me tell you, there were nights that the boys wanted to eat twenty minutes after suffering through dinner. Corn is in everything-- far more processed products than wheat. (Ketchup, juices, vitamin pills, just about anything ready made, most gluten free products, it is even in Kelloggs Rice Crispies!!!!) It has many hidden names that it goes by as it is the main source of sweetener and thickener in the USA, actually out-producing good old-fashioned table sugar these days. I researched corn allergy suffering web sites and found one with a forum. Some members were so intolerant of corn that they were using baking soda and water to brush their teeth!!! (It is also in shampoos, conditioners, body soaps, deodorant) we could get real crazy here if we wanted to completely eliminate it all together, after all the skin is our body's biggest organ. In our case we did not go to that extreme. Instead we just took it out of our food. My son's ticking stopped the day after the complete elimination diet and has not returned since. My neighbors joke that my husband and I are going to become "after eight" eaters. Tonight he is going to get me a greasy burger with fries after the kids go to bed.

I hope this helps to clarify things.

Also, conversely,

It is in all but one baby formula sold in the US. When Ian was an infant I nursed him for about a year, then switched him to formula. He had a severe reaction... now I wonder if it was really the milk, or a corn-based formula that did it? Just something for you all to think about. Ian can take regular old milk (although he doesn't like it) and all dairy products without any trouble. Today I went without any vitamins for him all day, just to see what would happen. No ticks. (Although he was a bit edgy today.) He is much calmer and happier with the supplements. I did give them to him just now, as they are great for helping him get to sleep at night (must be the magnesium in them.)

Also, for the record, we did have a titer test done on him in February to rule out Pandas. His levels came back in the normal range. I have read that some kids react seasonally to Strep outbreaks by ticking for four to six months and then being tick free (usually in the summer). This is in the back of my mind. I am not 100 percent convinced that his original outbreak wasn't due to a strep exposure. (He complained of a sore throat two weeks before ticking and four weeks before the titer test.) Then I got strep myself about two weeks after his titer test. Ian has not been on antibiotics at all, for any reason. I suppose we will just have to wait and see what happens this winter.

 

P.S. Thanks Kim for Clair's thread. I read through the first part of it, and found COMPLETE agreement with #14's response in regards to our son's ticking and behavior on CORN (we only did Alcat test, not scratch test):

 

14. NT Bowen, corn, gluten, and dairy. Minimal TI- lots of facial grimacing, tensing (arms and whole body), jumping, echolalia. Significant behavior difference with CORN eliminated. We have a "true" corn allergy shown on a scratch test. When completely eliminated (which is very hard to do), diarrhea, asthma, and "drunken" behavior as we call it disappeared. His eyes would get red, pushing people, completely unable to control his behavior, woke up unconsolable from naps. If he gets corn, these things return immediately...we always know when a mistake has happened.

 

Our son has had behavioral "outbursts" since before he was two, and they always seemed to come out of nowhere. He had problems last summer in day camp and last fall in preschool with pushing. He always had problems with diarrhea on and off, and I can completely relate to the "drunken" behavior description. We used to call it "cuckoo" time. He also had crying fits at times and they evolved into fits of shouting "I hate myself" or "I hate you", but all of that is completely gone now, even without the vitamins. (Prior to eliminating Corn and all other allergens from his diet the vitamins were very helpful with mood and tics, but they were never completely eliminated.)

 

And BTW,

here is a good site for those out there that have tested positive for corn allergy/intolerance:

http://www.cornallergens.com/new/basic-cor...lergy-steps.php

[faith]

Caryn,

Wow. Again, I'm really happy to see that someone else feels a direct correlation to the elimination of an offending food and a reduction of tics. Are you saying that your son had multiple tics and then when you totally got to the point of elimination the corn and whateve else, he has completely stopped the tics? Did your son ever have a vocal? We are still dealing with that one, it doesn't seem to get better with the elim of corn/yeast, but the motor tics did.

 

Also, could you clarify what you stated about kids reacting to seasonal outbreaks of tics, I didn't quite get what you meant. We also had the titer tests twice and both were negative too. I just notice that fall through winter seems to be the time we dealt with tics in the past so far, while others here notice an increase in spring allergy season.

 

thanks

Faith

 

P.S. did you get my response to your message? I'm wondering now if it went through. I seem to be great at losing my posts lately.

[Caryn]

We eliminated all the things that were on Ian's orange list (Alcat results) and saw a great reduction in ticks. He always had a problem with teeth grinding and at times he would do it all day long. I don't know if you would call that a vocal or not. He also sniffed. Some people have classified that as a vocal. Ian also repeated words or asked us to repeat them over and over. I'm not sure this was a tic, after all he is only four years old. The word repetitions were always within the context of what we were talking about. He does have a very obsessive personality and is very driven, but again, I think that is more Ian than it is OCD. (We have never seen a compulsion, and we don't feel Ian's obsessions get in the way of a healthy childhood, for instance, right now he wants to learn to read, so now he is very focused on words, how they sound, how they are spelled.) He brings it into the context of daily life, asking about signs he sees while in the car, labels on food, etc...

It wasn't until we eliminated completely what was on the red list that we saw the tics disappear. I have not tested whether or not they would reappear with an accidental reintroduction of red list food, but based on what I read from Claire's string I would BET they would immediately reappear. From what I understand, Alcat's orange list needs a three-month withdrawal and red list needs six months. Because Corn and Wheat are on the red list and not permanent "eliminate" list (as was yellow dye #5 and sodium sulfite) I am assuming they can be reintroduced after six months on a once every four days routine.

Because Ian is completely tic free right now and because this organic restricted diet is so pricey, we are going to hold off on any additional doc visits and just see how this goes. I did read that NAET is a good way to rid the body of allergies without restrictions and eliminations, but you need something like 15-20 visits -- sounds like 1500-2000 dollars right there in doc visits. (We pay for our own insurance, and have limited coverage, so we have to be frugal). My dad also said he has a friend that got rid of a ton of allergies by seeing an acupuncturist. (The theory is that these people are highly allergic because of an underactive liver and the acupuncture stimulates the liver's enzymes and corrects the allergy problem). Don't know anything more about it, and would love to hear from someone who does. I am very interested in trying this in six months time if there is a problem still with wheat and corn. I would love to see Ian have a more "normal" life with food as he gets older. Conversely, he was very jaundiced at birth. I wonder if this is true for other kids with TS?

I'll tell you one thing, I have learned how to keep from wasting food here the old-fashioned way. I think the best way to do this is get organized and put your family on a regular menu. They will know what's for dinner based on the day of the week, and we rarely have leftovers anymore. It is not easy, but I just explained to Ian that these foods stop him from ticking, and God bless the child, he understood me and has not given me a hard time about it.

Faith, Did you say your son is allergic to corn too? Ian was a chronic bed wetter, and miraculously stopped wetting the bed when we completely eliminated wheat and corn.

[faith]

Thanks for that info Caryn,

Yes, corn and yeast was on the highly reactive list, flax was the very high one. Thanks for that corn allergy site, I had that on my favorites list, but forgot it was there. I was recently trying to figure out if these trader joe's crackers had corn it it. It didn't say so, but it had two ingredients I was trying to search out and sure enough they were on that list of hidden corn derivatives (invert syrup and malt extract) So he had alot of these crackers a few days ago, nothing drastic happened, but I feel when I looked closely, I was seeing a little head stuff poking through, very subtle. So out goes those crackers. Its my feeling that corn is our problem, although it hasn't helped with the vocal, as I said, that one still lingers. If you have found any good snack foods (cookies, crackers) that don't have any corn (and I gotta watch yeast too) feel free to share! I'm wondering now if I'm 100% corn free--I am very diligent, but I'm sure he's probably getting some hidden here and there, maybe I gotta tighten up. so far its been over three monts doing this. Like I said, I would not reintroduce for good, too scared, only once in a while when can't be helped.

 

Also, yes, my son started a bedwetting last summer--now I don't know if this has helped, because I night lift him and bring to bathroom at least once a night. I should try and see what happens. But I think he will, sometimes I catch him just in time when he's just damp. But if the tics are under control, he can piss all he wants!!

 

Faith

[patty]

Caryn,

 

Welcome!

 

Just want to add that we started NAET last summer for my son's food allergies and he seems to better tolerate the offending food. We plan on finishing NAET with food and environmental allergens this summer. Also, we are seeing a chirop who also does craniosacrol therapy and that seems to be helpful with my son. By working on the nervous system, it can sometimes indirectly desensitize one's food & airborne allergens.

 

Can't write more now, i gotta run.

 

Patty

[Andy]

We have an elimination diet for one of our sons. Every time we sway from it, usually something small at that, there is a price to pay. We only hope that with time he will be able to add some items to his diet but if not there is still plenty of food to choose from . Hope the rotation diet works with you.

[Andy]

We have an elimination diet for one of our sons. Every time we sway from it, usually something small at that, there is a price to pay. We only hope that with time he will be able to add some items to his diet but if not there is still plenty of food to choose from . Hope the rotation diet works with you.

 

By the way we have corn and any corn by-product on the list as well as gluten, rice, soy, sugar, and mushrooms.