Accepting dietary changes and IgG testing

[theretrohousewife]

Caryn

Did you have to do the ALCAT test through a Dr. or can you do it yourself?

[Caryn]

We could not get our pediatrician to write a script, and because we were going through our insurance we had to get one. Our chiropractor offered to write it and we were very pleased as a result. I believe you could order it without a script but then you would have to pay for the test yourself. As I understand, those that pay out of pocket pay less than the listed price. Double check that though, by calling the company. Phone: (800) US ALCAT (872-5228).
http://www.alcat.com/
I hope I don't sound like a commercial for this particular company. There are a couple of other companies that  have similar tests to the ALCAT. This company also charged more than the 'list' price when they billed the insurance company, then they billed us again for the difference when the insurance did not fully pick up the bill. I was dissatisfied to say the least, called and complained and they 'forgave' the additional charges.

[szcasey]

Hi Caryn,

Thanks so much for your response!  Yes, we do have a lot in common.  I wish we were closer!  If you are ever in Fairfield County Connecticut, please look me up (email me off-line).

I'm so glad to hear that Tigger hasn't had symptoms since X-mas!  You're doing the right things!  How long do you think it took before you figured out how to control (manage/supress) Tigger's TS symptoms?  I know it's different for everyone... 

Was it hard for Tigger to accept the diet changes?  So far Chris has been very good about not eating foods w/ coloring (e.g., M&Ms).  But I wonder how it will go when we eliminate dairy/wheat or whatever his allergies may be (I suspect dairy, chlorine and wouldn't be surprised if gluten is an issue).

I am shocked that corn is in so many things... coating on balloons?!?  amazing!

Yes, Chris was treated with antibiotics; once for Lyme Disease and once for Strep.  Tic'ing slowed during antibiotic treatment and stopped completely for a short period after the drugs were done.  Symptoms came back. 

I'm taking Chris for a free consult appointment at a chiropratic neurologist tomorrow morning.  I've corresponded with them via email and they say that they have had promissing results treating TS.  It sounds very interesting.

We see our peditrician on Thursday and I will approach him re the IgG testing.  He's pretty open and understanding. 

Thanks again for all the information you share!!  It's wonderful to have such a great support system and to talk to others in the same situation.
Best,
Sarah

[Caryn]

It took us six months to get the symptom triggers under control for Tigger. Looking back on it I really think the key was doing a 'anti-candida' type regime. If your son has had several courses of antibiotics candida could be an issue. We did the anti candida diet by fluke, really, because all his allergens happened to be candida supporting foods (which we did not know at the time). According to his IgG we were told to stay away from peanuts, egg yolks, corn, wheat, chocolate, among other things. Getting rid of the corn knocked out a lot of dairy products. Being gluten free also changed Tigger's tastes. He now thinks milk is yucky. Many cheeses and dairy products are not corn free so we just kept reducing down the dairy more and more as we learned more and more about corn allergens in foods and products. I think his little body finally had enough time to heal itself after doing this for nearly a year (anniversary next week). That is the thing that I think most people don't realize. We all want immediate results, but sometimes the healing is a long way off and our little efforts every day add to that healing, one pomegranate, piece of spinach, glass or real not-from concentrate orange juice at a time. Honestly, the ticcing did not lessen until he was gluten free for two months, and didn't stop until he was gluten free five months. We saw a reoccurence in the fall, around Halloween time and that is when I started to heavily research the candida thing. It appeared that the added sugar and reintroductrion of chocolate did something to him, even on rotation. I was confused about this. I learned a lot about candida and began again to cut out the sugars and chocolate. He will still get sweets but they are reserved for a very special occasion and in limited quantities. I am now baking and cooking with alternative sweeteners like maple syrup (still can cause candida too, so I use small amounts) and honey. They are accustomed to the low sugar diet now and are okay with it. Actually, I have a juice product I bought "Honest Kids" that I can't give to Tigger (corn) and so I gave it to the neighbor boy when he visited. He didn't like it (not sweet enough) and Chuckles (my three year old) thought it was too sweet. LOL.
As far as feeding them differently, I am very lucky that my husband is a fun guy and he gets them to eat stuff all the time that I can't. He has gotten the boys to eat fresh greens without any dressing on a challenge. They just love that! We also reward and praise them for making good choices. It takes time, but even when they resist don't give in. Eventually they will get hungry enough to eat the right thing. They won't starve. Once you placate them you will always have to placate them. You will be surprised at how well they are willing to eat in time. Now my ds's are always asking if things are gluten free or if they are organic. It makes for interesting conversations on playdates

[ives6797]

Hi and welcome! I'm in CT, but not Fairfield county. It was nice out today! Can't wait for it to get even warmer!!

[szcasey]

Hi and welcome! I'm in CT, but not Fairfield county. It was nice out today! Can't wait for it to get even warmer!!

Hi Ives6797.  Was absolutely beautiful today!  Thanks for the welcome.  Please look me up if you're in the area. Best, Sarah   

[Caryn]

Jules,
I read the Feingold literature about excessive talking from food intolerances, but in our case the excessive talking never subsided, LOL. Our son hums tunes a lot and some parents consider that a verbal tic. We don't because he is very musical and according to his music teacher humming is quite common with musical kids. (He also doesn't do it when he is at school or watching T.V., playing the computer, etc...) He plays the keyboard every day and likes to make up little tunes all day long. He tends to hum during his imaginative play time. He is quiet during his down time (reading).
What did stop when we stopped the intolerant foods was the irritability, spaciness, bed wetting, and after some time the tics. If your son is young and talkative I would think that that is a normal part of development. Mine is just very curious and has a lot of questions. He used to have high anxiety when we did not answer his questions or when we did not understand him. He is much less anxious and moody now and more willing to be patient and wait (as long as he has not accidentally ingested any allergens).
Once you submit the blood work you should get results in about a week. Then you will have a fairly good idea about his triggers. The Alcat also tested chemical additives and in addition to the food we discovered Tigger was very intolerant of Yellow #5 and sodium nitrates (stuff used to preserve meats). He also has issues with toulene (stuff in spray paint). So the source of the problem can encompass much more than just the food. Many kids have chemical sensitivities that are just as bad as their food sensitivities. (I have 'relearned' this recently after starting him on enzymes and giving him restaurant foods.)
Caryn

[Jules]

Caryn,
Thank you for the info.  My son just talks alot when he is having conversation with someone.  He just goes on too long on each topic though.  We will give the IGG a go, and see if that could have something to do with it. 
Thank you,
Julie

[Jules]

My son's naturopath called today to tell us that my son was positive on the IGG for gluten.  He said all of the testing hasn't come back, but he wanted to let us know about the gluten so we can get a head start on his diet.  So, looks like I will be researching this forum and printing off alot of healful information. 
Thanks,
Jules

[Caryn]

Oh, Jules!
Well, that is tough news to get. How are you coping? I cried a lot in the beginning. I'll be honest, I went through a depressive funk just after we got the results. I went from depressed to angry to overwhelmed. But finding others in the same boat really got me to focus on the positives more and gave me that 'stick-to-it-ness'. We are all here for you-- whatever you need.
What is your situation as far as ability to find/buy special gluten free foods? How old is your son? What's he eating like right now? Maybe we can try to help you find replacement foods that are similar to his favorites.
Let us know how we can help.
Caryn

[Tami]

Jules,

I remember the day I got the "heads-up" call from the naturopath.  We had been gluten free for several weeks at the time, based on typical alternative protocol, so I had been through the hard part.

I had a completely different reaction than Caryn did, probably because I had the perspective of her shared experience.  For me, it was a relief.  It gave me some control back.  If the test was negative, I would still be scrambling around in the dark, looking for answers. 

Even though I approached the situation from a different perspective, it was still really, really hard and unbearably inconvenient.  It does get easier, much easier.  The good news is its going to hurt you a lot more than your kid.  My son is five and doesn't even know that he is gluten free.  He's not inconvenienced by it as there are so many alternatives available.  He does however really miss the candy and sweets, but that is a different issue entirely.

[Jules]

We are actually handling it pretty well.  Of course we haven't started changing over to gluten free yet, I may feel differently after that!  We switched our household over to Feingold foods only, so I am looking at it as just changing it over to non gluten also.  I know it will be hard, but hopefully we will cope.  We have a Trader Joe's and Whole Foods, so I think that will help out alot.  I will also have to get some cookbooks and will print off some of the recipes on this site.  My son is 18, alot older than the children on this website.  We have dealt with his tics(just motor), and mild ocd since he was 6.  His tics are minimal now, but he has alot of stomach issues that hopefully going non gluten will help.He is a very willing guy, to try things that are good for his health.

[Caryn]

Jules,
On the upside, most GF products are suitable for Feingold. So that much is easy. On the down side they can cost up to four times more than glutenous foods. (Except the cereals, for some reason). Since you are just embarking on this journey I wanted to give you a head's up. I just talked with our accountant and the woman that owns the celiac and special needs dietary shop in my neighborhood (Lil's Dietary Shop). Both confirmed that buying gluten free foods is a tax write off and that if you have an Health Savings Account you can use your card to buy gluten free items with it (in most cases, double check to be sure). The catch is that you need an official diagnosis from a doctor. So you will most definitely want to talk with your doc asap about that. We went gluten free long before I attempted to get a biopsy. Now I am going to go through enterolabs to have genetic screening done. (Besides, in the case of neurological symptoms a biopsy is not always positive). A woman on a Celiac forum got an official diagnosis from her doctor for her child with neurological symptoms based on the fact that he tested positive to having both genes associated with celiac. We are about to take this route. I will post more in the future when I get more info and my feet wet.
Caryn