Trying food elimination in NJ

[KJS]

We've started the Feingold diet for our almost 12 year old daughter and today is day 7. All of the food in our pantry and fridge right now is on the Stage One list so there's no chance of grabbing something that's not on the plan. Although this is not necessarily part of the Feingold Stage One plan, I'm trying to also eliminate corn syrup since so many out there have found this to be a problem.

 

Out of the house is harder, in general, but we're trying to impress upon our daughter that it's important to only eat the food I send for her because, at this point in the program, reading labels really isn't sufficient. It's hard to say whether there's been any difference in the tics. (Does anyone else find themselves questioning their powers of observation?) She reported eating a bit of someone's orange on the school bus home on Friday & before I knew that I did think I noticed her eyes darting about more than usual & I wondered about that. So perhaps there is a sensitivity. Oranges are not in Stage One so they might be something I try to re-introduce at a later time as a test.

 

How long has it taken others to see a change when trying Feingold or something like it? (We're the ones who tried 'no screens' for 12 days a couple of months ago without seeing a reduction in tics.)

 

Karen

[Andy]

I hope the Fiengold diet works for you. It would have not been enough for us. My son is on a very strick elimination diet that is based upon blood work for delayed food allergies. This basically means no soy, no milk/dairy products, no rice, no wheat - guluten products, no cane sugar, no corn or corn products- which is hidden under many different names, and no mushrooms comes to mind. Now did the diet work. Big time and within two to three weeks. My son was able to go to the bathroom, he was able to sleep at night, his behavior became predicatable which means sweet. He takes after his mother with that. The diet was the first step for us for our son's treatment and a major one. I would recommend to you that you have your child tested for yeast and delayed food allergies if the Fiengold diet is not working for you for the issue may be larger then the Fiengold covers.

[KJS]

Yes, Andy, I realize that the Feingold diet may not be enough. It seemed like a good place to start, though. If we don't get results we think are significant then we will have her tested and go from there. We did the simple 'spit test' for yeast that was recommended here and it came up negative. Crude, I know, but maybe we can say that's not an immediate concern. Maybe not. I'm hesitant to start eliminating the more difficult items like gluten and casein (wheat & dairy) without the testing. Do you agree?

 

Karen

[Andy]

I think that everyone has to do what is best for them and take the steps that they feel are needed and when they feel that they are ready to take them. I am a special education teacher and for years I used to suggest to parents that they look at the Fiengold diet and supplements for ADD and ADD/HD before they look at medication. So I am a big fan of the Fiengold diet for a long time, over 20 years I believe. If the Fiengold diet does the trick for your childs needs then great. If not, then I would suggest tests before you do an elimination diet to make sure you are doing the right thing. Healthy as it may be, it is not a fun diet.

[KJS]

I hear you, Andy.

[KJS]

An update on our attempt with Feingold. After about 13 good days my daughter started to rebel, saying she didn't want to do it anymore. This is the second such conversation about it and I tried to explain how we won't know if foods are an issue unless we really stick to the plan. Thursday she emerged from school with a blue & red ice pop and wouldn't give it up. She had a friend in the car with her and I chose to only struggle so long with her before giving in, even though I had yummy, FG-approved snacks with me for her. Her friend got out of the car just minutes later and the ice pop was dumped after only a few bites. But it's getting harder.

 

How do people handle out of the house parties and other such situations? Our family had 3 events this weekend and even though I brought food with me she just wouldn't take it, not wanting to be seen by her friends with different food. We tried to be cautious with the food that was served but it's impossible to know if everything we chose was really acceptable. This is so hard because we don't even know if the foods are going to turn out to be triggers for her...

 

Karen

[quan_daniel]

KJS,

We started fengold on our 5 1/2 year old when he was 4 1/2...

He was so stresed out in school..to this day..he is still stressed out..

We could not noticed what caused him tic even after 2 months of fengold..

we only knew it was potato..so we eliminate potato..we eliminate milk..because his peptyde test shows up as positive..

 

he still tics.. but happier..

 

now doing flax seed oil (2 1/2 weeks) probiotic( a week) ..and who knows where we go from there..enzymes,, bonnie supplement..who knows..

 

Kids..have feelings too..we should respect that..I am trying ..but not always successfull..my wife is great with kids..

 

sigh..I know what u are going through..

 

All these parents making their kids going through all these tests..(I know it helps them..especially if they need to take medication)...but my heart goes out to these kids..for their courage and commitment..

 

An update on our attempt with Feingold.  After about 13 good days my daughter started to rebel, saying she didn't want to do it anymore.  This is the second such conversation about it and I tried to explain how we won't know if foods are an issue unless we really stick to the plan.  Thursday she emerged from school with a blue & red ice pop and wouldn't give it up.  She had a friend in the car with her and I chose to only struggle so long with her before giving in, even though I had yummy, FG-approved snacks with me for her.  Her friend got out of the car just minutes later and the ice pop was dumped after only a few bites.  But it's getting harder.

 

How do people handle out of the house parties and other such situations?  Our family had 3 events this weekend and even though I brought food with me she just wouldn't take it, not wanting to be seen by her friends with different food.  We tried to be cautious with the food that was served but it's impossible to know if everything we chose was really acceptable.  This is so hard because we don't even know if the foods are going to turn out to be triggers for her...

 

Karen

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[quan_daniel]

KJS,

Sometime u have to heal the gut first..yeast/bad bacteria/maybe heavy metal..

 

then if she still does have true food allergy..then fengold diet would really show..

 

because..right now if the gut is still leaky...no matter what food u eliminate..the other food u give will still give off toxins..

so tic will happen..

 

it is only a theory..no major mainstream doc/scientist will back this up..

the one who back this up is probiotic sellers..plus the DAN docs..

 

I am so confused but nonetheless a believer..

 

Have u try bonnie supp..?

 

See if that works..why..at least u know if she has a magnesium deficiency..

and magnesium deficiency..can be attrib to leaky gut..

 

daniel quan

 

 

KJS,

We started fengold on our 5 1/2 year old when he was 4 1/2...

He was so stresed out in school..to this day..he is still stressed out..

We could not noticed what caused him tic even after 2 months of fengold..

we only knew it was potato..so we eliminate potato..we eliminate milk..because his peptyde test shows up as positive..

 

he still tics.. but happier..

 

now doing flax seed oil (2 1/2 weeks) probiotic( a week) ..and who knows where we go from there..enzymes,, bonnie supplement..who knows..

 

Kids..have feelings too..we should respect that..I am trying ..but not always successfull..my wife is great with kids..

 

sigh..I know what u are going through..

 

All these parents making their kids going through all these tests..(I know it helps them..especially if they need to take medication)...but my heart goes out to these kids..for their courage and commitment..

 

An update on our attempt with Feingold.  After about 13 good days my daughter started to rebel, saying she didn't want to do it anymore.  This is the second such conversation about it and I tried to explain how we won't know if foods are an issue unless we really stick to the plan.  Thursday she emerged from school with a blue & red ice pop and wouldn't give it up.  She had a friend in the car with her and I chose to only struggle so long with her before giving in, even though I had yummy, FG-approved snacks with me for her.  Her friend got out of the car just minutes later and the ice pop was dumped after only a few bites.  But it's getting harder.

 

How do people handle out of the house parties and other such situations?  Our family had 3 events this weekend and even though I brought food with me she just wouldn't take it, not wanting to be seen by her friends with different food.  We tried to be cautious with the food that was served but it's impossible to know if everything we chose was really acceptable.  This is so hard because we don't even know if the foods are going to turn out to be triggers for her...

 

Karen

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[KJS]

Thanks for your comments, Daniel. I know that we are kind of shooting in the dark by trying Feingold without having done any testing. It seemed like an okay place to start. Now I wonder if it could possibly be enough - and probably, it isn't. Kim talked about enzymes, you and others talk about supplements, and I'm not at all sure where to go next. We don't have a DAN doc, or any doc at this point who believes in any of this, so I'm going to continue my search for someone. I'm anxiously awaiting Dara's report after seeing a DAN doc in NJ later this week, as I also live in NJ. My daughter's tics really aren't that bad, especially compared to many I've read about here (my heart goes out to those who have more difficult issues to deal with), so sometimes I wonder if we should "wait it out."

 

Good luck.

Karen

[quan_daniel]

We did the same thing you guys did..

can I ask something that might be personal..

When did your child start having tics..at what age..

and has it been always this mild..

what kind of tics does she have..

 

my son started grimacing with a hm sound..now it is shoulder shrug and/or neck turning..

 

but overall it is mild..of course there are days when it is more severe..

 

Does she have allergies?

 

When she was young..any problem with strep, cellulitis(infection under skin) caused

by strep..

 

Huge dosage of antibiotic.. or even antibiotic through IV.

 

Karen, there are a lot of similarity with these kids..and mine...

 

and only through comparison..and profiling..to know what works..

 

bonnie supp works form Kim's child..share similar profile with my son..

 

I think the more we share..the more we learn...

 

thanks

 

 

you can PM me if you want..thanks

daniel quan

 

 

 

 

Thanks for your comments, Daniel.  I know that we are kind of shooting in the dark by trying Feingold without having done any testing.  It seemed like an okay place to start.  Now I wonder if it could possibly be enough - and probably, it isn't.  Kim talked about enzymes, you and others talk about supplements, and I'm not at all sure where to go next.  We don't have a DAN doc, or any doc at this point who believes in any of this, so I'm going to continue my search for someone.  I'm anxiously awaiting Dara's report after seeing a DAN doc in NJ later this week, as I also live in NJ.  My daughter's tics really aren't that bad, especially compared to many I've read about here (my heart goes out to those who have more difficult issues to deal with), so sometimes I wonder if we should "wait it out."

 

Good luck.

Karen

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[Jeff]

Karen, We have been on FG for about 5 years. I know what you're going through as far as the difficulties of following the program. We started out trying to comply very strictly, and I remember how overwhelming and depressing it could be, but at least for us we knew it was helping with the tics. As we got more experienced, we relaxed the rules a lot, and we now follow a much less strict version of the program. It's not nearly as difficult for us now, and our tics are very much under control. In fact, true FG-ers would probably say that we really don't follow the program. We find that if we keep our meals at home very "clean", our tic levels remain mild, even if we go off-program occasionally. We tried using all natural shampoos and toothpastes at first, but we didn't like the products so we now use "regular" products. We have found that for us it's more important to eliminate the colors and flavors, as well as the BHA, BHT, and TBHQ. We also are careful with corn syrup and too many salicylates. As long as we don't overdo it, we're okay. I know that we are very lucky in that sense. Some who follow the program are unable to deviate at all without seeing some severe reactions.

We let the girls make their own decisions when they go to birthday parties or have celebrations in school. We encourage them to take a small piece of cake, and to try to avoid the most colorful icings, or to sample a few items, but not pig out. This has worked out very well for us and for the girls, as they don't have to feel "different" by eating their own foods. As they get older, they make more mature decisions, and as they get bigger, they can tolerate more infractions.

Like I said, we are luckier than many. And our reactions are merely mild tic'cing, which certainly is not as serious as life or death, or severe behavioral problems. If we do overdo it, and start ticcing more, we can usually determine what caused it, and we have peace of mind knowing that we can clean out our systems and get them back under control in a short time.

 

Our breakfasts, lunches, and dinners are about 90 % "approved" items. I think that's what keeps us on track. We are also fortunate that we haven't had to eliminate the hard things, like dairy or gluten, or wheat. That would certainly be a different story. Our girls have been doing this since they were younger, so they have grown up with it. Trying to start at age 12 certainly would be more of a challenge. I would recommend that you do your best to keep a clean diet in the house. If you start to see results after a few weeks, then maybe your daughter will begin to believe in it, and will see the consequences of eating too much of the wrong things.

 

It's certainly possible, as others have said, that the FG program won't be an answer for you. But it certainly has helped us, as well as others on the board.

 

By the way, we started the program when my oldest daughter was about 7 years old. She began to tic very badly - nothing as debilitating as what others have experienced - but she had tics in her hands, shoulders, and face (frequent nose scrunching, mouth opening). Her body was in constant motion. When she'd sit on my lap for books, she was constantly twisting, tensing, and moving. Children were teasing her about the facial ones, and she was starting to withdraw socially. It was devastating to watch this happening to our little princess. Believe me... I know the pain that you are all feeling. At a really low point, we read an article that mentioned a link between tic'ing and artificial colors. We thought back a couple of weeks and realized that she had been eating a lot of Twizzlers, Reese Cups, and gummy bears during that period. A light went off, and we started down that road. Within a couple of weeks the tics dropped way down. When she'd sit on my lap for books, she was as still as a rock. We were believers. We have followed the program ever since, and the tic levels have never gotten back to the level where they were when she was in first and second grade.

 

Yes, we make sacrifices with regard to what we eat or don't eat, but for us they are small sacrifices considering the results we have seen.

 

Sorry to go on so long! I hope it was helpful.

Jeff

[KJS]

Hi Jeff,

Your comments were BEYOND helpful! Your note actually brought tears to my eyes because you understand so totally what this is like for us. If only we'd been doing this for long enough, or diligently enough, to know whether or not it will make a difference! Knowing so would help with the motivation, as you said. I've tried to remind my daughter that both she & her parents thought we saw some improvement at the end of 10 days or so and a longer trial will help us know for sure whether some of these things are issues for her. Starting at this age is definitely a confounding factor when it comes to compliance.

 

Your advice about keeping things "clean" in the house is something we follow. There's nothing my daughter can reach for at home that isn't "approved," and that makes things very easy and calm at home. I don't have to say "no" and that makes both me and my daughter feel good.

 

I appreciate your advice about how to handle birthday parties and other out-of-house eating situations. Avoiding the most colorful sweets and eating in moderation are suggestions I'll share with my daughter. How did you figure out which items you could relax about? At this stage I'm still trying to be very strict, not just reading labels but only purchasing things on the Feingold food list. At home do you only have foods from the list or do you read labels and just avoid certain ingredients?

 

Thank you again for your thoughtful note and your words of support. I found them so helpful and so timely.

 

Karen

[Jeff]

Hi again, We are always keeping our eyes open for new foods. In fact, many of our regular staples are not listed in the Food Guide. There are just too many products out there for the volunteers to be able to research each and every one. However, if not on the food guide, we certainly read the labels and avoid anything artificial, or with the 3 preservatives. We frequent the "health-food" aisles of the grocery store, and buy a lot of organic- or all-natural foods for snacky things. Certainly many of the products are more expensive, but that's just something we have to live with.

Once we introduce something new to the house, we kind of monitor things to see if there's a reaction. Well..., it's more like, if we see a reaction, we go back and see if we introduced anything new to the house. We can usually pin-point something. Mostly it's just experience that comes with time.

I remember that we tried to eat Cheerio's but were seeing a reaction even though the label read clean. We found out that they use BHA or BHT in the packaging, but don't include it on the label. Finding a replacement that the girls liked was difficult, but we finally found a line of organic products called "Cascadian Farms". I don't think they're in the food guide, but the girls do like them, and no reactions. One unbelievable thing happened just recently. Giving up Oreos has to be one of the hardest things a person can have to do. Finding an acceptable replacement has been until now impossible (most tasted yucky). My wife recently brought home an organic brand - something like Natural Horizons....? - I'll have to check - which actually are very good. My daughter traded one of hers for an Oreo at school the other day, and liked the organic ones better than the Oreo. That's a big deal!

One very important tool, especially at first, is keeping a good food diary. Take note of everything you eat every day, and observe reactions. Remember, sometimes reactions are delayed and can appear 1-2 days after eating the trigger.

[KJS]

Hi,

Yes, the Oreo thing was hard here, but the Back to Nature brand tastes good. I'm not sure if it's as 'clean' as the package indicates it might be but you could give it a try along with the other one you mentioned. This brand is at Whole Foods and at some regular supermarkets. I've heard about preservatives in the packaging material - not fair!

[Gina]

KJS,

 

We are not on the Fiengold Diet but we did eliminate a lot of things from my sons diet. Something I know that helped with eliminating foods from my son (9 yrs old) was to take it slow and not pull everything all at once. I gave him a list of things that we were going to take out of our diets and let him choose which 2 we would take out first and as time went on he choose the next 2 to take out and so on. I think its was easier because it was his decision instead of me making demands on him. But I know that at school parties and functions we let it go because the stress of having to turn something away in front of his peers was also making him tic. I hope as he gets older that wont be the case but for now he makes his own choices at outings. He has also become aware at times when those choices he made were not the best ones.

 

It will eventually get easier as time goes on.

Take Care,

Gina