I feel like this food testing thing has gone on forever. It really shouldn't have been this complicated. Since I went in without a clue, I thought I'd share my experience so you can navigate around the mistakes I made. I'm not a doctor or health care professional, and everything I know about food testing is what I have read or been told by a professional. So don't take this as medical advice, rather as advice from a mom who just wants to give you a head start when you try to help your child.
First, a quick rundown on the difference between food allergies and food sensitivities. Sensitivities are sometimes referred to as intolerances, but some books say they are actually different things. Of course, some people say "allergies" when they mean "sensitivities" (which are definitely not the same thing), so it's really a matter of wading through and finding the information *you* need and filtering the rest. Food allergies (IgE reactions) are the immediate reactions. They can include rashes or anaphylactic shock, but they are not always so severe or noticeable. These allergies will not go away and will test positive even if the food has not been eaten recently. Sensitivities (IgG4 reactions) can cause delayed reactions, which is what makes it hard, even on an elimination diet, to track the problem foods. In order for sensitivities to test positive, you must have eaten the food recently. Obviously, you don't want to eat something you have a known reaction to. You already know to avoid that. Sensitivities will lessen or disappear completely if the food is strictly avoided for a period of time. I'm finding different time frames on when to try reintroducing the trigger food. From six months to a year. That would be something to talk to your doctor or a nutritionist about.
Now for the drama. I'll try to stick to the condensed version. :-)
After a bit of spinning in circles and getting my bearings, I called an Alternative Health practitioner who was very helpful on the phone. I already knew that there is a difference between classic allergic reactions (IgE) and food sensitivities (IgG4). There are different tests that serve different purposes. The practitioner to whom I was speaking uses tests from Metametrix Clinical Laboratory, which also happens to be the lab used by Brain Balance. As far as I can find, Metametrix has an excellent reputation, so I would suggest finding a professional that works with them or with another reputable lab for your testing. I do not recommend the route I took, although you may have a better experience than I did.
If you already have a doctor who is open to the idea of alternative treatments, talk to him about your concerns and your research and see which tests he recommends. The testing we decided on was the Food Allergies and Sensitivities test (IgE and IgG4). There is also a TRIAD profile that is apparently used for ASD children, but it doesn't test for as many foods, and since that was my focus at this point, I went with the allergy test.
So the phone call was very helpful, no-pressure. He gave me the prices for the tests ($346 for the allergy test and approx $500 for the TRIAD), as well as explaining the differences between the tests. Here's where it all goes south. A month or so later, we finally decided we could afford to get the test done. I called the very helpful practitioner to find out what we needed to do to get the test done. I was told that we needed to come in for a consultation to verify that the correct test was being ordered. The consultation would cost $45. Okay, fine. Except that no new information was passed from either party during said consultation. So I'm a little baffled about how helpful the (free) phone call was. You give away information for free, then charge for nothing? Whatever. We get the kits and the order to take to the lab so they'll draw the blood and process the test... Oh, yes, and by the way, you have to drive an hour to the lab and pay $25 to have them draw the blood.
Okay, so we're up to $70 over the initial $346 quoted for the test. (More if you add the cost of gas, but we won't go there.) I get ready to pay and the total is almost $30 higher than I expected, even after the consultation fee was added. When I questioned the total, I got the oh-so-casual response, "Tax on the kit." Well, okay, then. So you couldn't tell me that over the phone when I asked about the price of the kit? So the $346 test would actually be closer to $444, almost $100 more than I was originally told. I was a little irked. If you've read my other posts, you know I don't do "irked" well. I can see the need for the consultation, when the doctor (the person I talked to on the phone is not a doctor; I'm actually a little fuzzy on exactly what his title or job is; there was an actual doctor on hand for the consultation) is writing what amounts to a prescription, and I was told about that before I chose to drive over to the office. However, I did not appreciate the other extras that were casually thrown at me when it was time to pay.
I promised the condensed version, didn't I? Sorry... I ended up not getting that test. I did pay the $45 for the consultation, but chose to skip the rest of it. The lesson here is always ask if there are any other costs associated with the test. I didn't know what to ask.
Although I had searched online, I had not found a site from which I could order a test to do at home. Either I wasn't using the right search terms, or there is some really poor SEO at play. I accidentally came across http://www.allergysmarts.com/ when a friend sent a link about food sensitivities to one of my homeschool groups. Their test tests for 96 food allergens and candida and only costs $329 plus $9.95 shipping. That's it. No surprises. Well, not on the money end, anyway.
Their FAQ states, "Once you place your order with us, we will immediately ship you your Food Intolerance Kit. You can expect to receive it in the mail within 7 to 10 days." I placed the order on Dec 21. I expected there would be some delay due to the holiday. I didn't get an email telling me that my order would not ship until January, and there was nothing on the website stating that the office was closed for a long holiday. It actually wasn't even the holiday yet. On January 5, it occurred to me that it had been much longer than 10 days. On January 6, I emailed again, and I was getting a little testy. It had been 17 days since I placed my order and I hadn't heard anything from them. About 30 minutes later, I got an email stating that my order had been shipped on January 5 and that the office had been closed for the holiday. They were apologetic and said if I notified them when I returned the blood sample (easily done at home, by dropping blood on a sample card, without the $25 draw charge), they would expedite the results.
I got an email on Jan 25 saying that my sample had been received. I don't know if they notify everyone or if annoying people get special treatment. At the time, the FAQs said that the results were usually back in about two weeks. I expected the test to take at least 10 days. I don't think it's stated on the Allergysmarts site, but the Metametrix test is a 10-day test, so they can check for delayed reactions. I assume Allergysmarts does the same thing. On Feb 25, which was two weeks and one day after they got my sample, I emailed asking about an ETA. I mentioned that non-expedited results only take two weeks. So why was mine taking longer? That was a Wednesday. "Your results are expected back tomorrow." If "tomorrow" is the same as late Friday afternoon, then they came back right on time.
When I finally got the results, they came with this message, "The usual turnaround time is around three weeks, so I apologize if this took longer than that." I suggested they change their FAQ to reflect that, and strangely enough, they did. Now it reads, "Once the laboratory receives your sample, results are usually available in about 3 weeks. Note that reporting may be delayed after Christmas, Easter and Thanksgiving holidays." Score one for the squeaky wheel.
Part of the "package" is a 15-minute phone consultation with a nutritionist. Although we got the results on Friday, I didn't talk to the nutritionist until Wednesday. Because he's in Dubai. And aside from the time difference, he can't make phone calls if his internet connection is down. No, I don't know why they're using a nutritionist in Dubai. He did seem to know what he was talking about, though. I didn't get any new information from the conversation. The test only showed two trigger foods, eggs and milk (which explains why the gluten-free experiment failed; everything I made had eggs in it), so maybe if you have several trigger foods, or if you're not as big a nerd as I am, the consultation would be helpful.
The lesson here is sometimes things go bizarrely awry. I checked the BBB site before I ordered from Allergysmarts and they don't show up there at all. They are probably just fine if you don't try to order a kit near a holiday. I'm not saying not to use them; I'm just saying be aware that things may not go as smoothly as if you work with a local doctor. They do have some useful information on the site, though, so if you want to learn more about how food sensitivities can affect your health (not just for ASD folks), check it out.
So we finally have our food issue nailed down, and we'll be starting the Brain Balance at-home program (from the book Disconnected Kids; see the About page for more information) again next week. We'll see if it works better with the trigger foods out of the way.
I know what you're thinking. I did promise the condensed version... And sadly, this is the condensed version.