Anyone have experience with ELISA/ACT testing for delayed food sensitivities?

[NanCcan]

I read an old thread on this topic, but many responders did not understand that ELISA/ACT is different from other blood tests for delayed food sensitivities.

This is a specific type of testing for delayed (food and other) allergies that supposedly is more accurate, with fewer false positives and greater sensitivity, but the vast majority of the reviews and articles about it online are by the person/company that does the testing.  Unlike typical food allergy (IgE) or food intolerance (IgG4) testing, this tests for lymphocyte response (LRA).

I've had blood tests over the years for over 80 foods and have delayed allergies (aka intolerances) to dozens of foods (all IgE responses were negative, but many IgG4 were positive).  I try to avoid those foods - or, if impossible to avoid, rotate so that I eat them no more often than every 5 days. But avoiding so many foods means I am eating other foods more frequently and so am likely to have become sensitive to those foods.  I can't take the years to experiment starting with an elimination diet because I have a family to feed and a limited energy budget (I have ME/CFS and that comes with super-sensitivity to light, noise, and apparently foods, too).

I've been making all meals from scratch - with many ingredients coming from my own, organic garden - for decades.  I'm even trying to improve my gut flora and fauna with homemade kefir (water kefir cuz I'm allergic to dairy), raw fermented vegetables and inulin (in my homegrown sunchokes; the powdered inulin you can buy didn't have the same effectiveness).  I've been journaling daily, foods and MANY other things that can affect symptoms for 10 years, but have so many sensitivities that journaling alone is not helping.

The ELISA/ACT testing is expensive, but I'm certain I've spent more than the $1,700.00max over the years on buying and growing the few foods left that I CAN eat.  I'd sure like to have a more accurate test of which foods are causing the many delayed symptoms I am experiencing.

Please let me know if you have had the testing and whether it seemed it really was more accurate.

[alchemist]

I have yet to find any test worth spending money on.......elimination and reintroduction is the only way (I have found ) to test that works,the removal of ALL grains regardless of gluten has helped a lot .....my body does not like rice and corn (being from England that's hardly surprising) no fruit or nightshades (except potatoes that don't have even the slightest shade of green) nothing fermented ....very little dairy other than grass-fed butter and heavy whipping cream (both organic) and about 2 tsps of organic sugar.....in other words remove everything that has a "taste" ie smoked-pickled-fermented-sweet and I can function...... long story short is that food as a form of enjoyment has been long gone and I don't even look at it that way anymore...... of course this goes against all we have been programmed to expect from life ....... food and booze are the reasons for living according to the media....... its taken me 20 years to get to this point of view and I understand its not wgat people want ....but its being my best way of dealing with my crazy sensitivities

cheers

Steve

[JenR1981]

I had this testing by a naturopath in 2014. It changed my life for the better. I don't have Celiac, but gluten makes me sick, as do a lot of other foods. I had at least three different digestive-related issues, all of which went away when I cut out the items (not just food) on my results. I read an NIH-published paper recently that verified that lymphocyte testing is accurate. My body becomes intolerant to anything I eat a lot of, so since I went gluten-free in 2008, my sensitivities include brown rice and tapioca. It's frustrating, but I'm grateful to have gotten the testing done, as expensive as it was. A regular allergist didn't diagnose anything. It's possible insurance would reimburse for some of these expenses now; I don't know. BCBS did not in 2008. I spent about $1,000 total, but I'd do it all again.

[NanCcan]

Thanks, Jen R, for letting us know of your experience. I finally got my doctor to order the test kit in March. $1000 is what it cost if my doctor ordered it; I hadn't realized how much money that would save me. Insurance wouldn't cover any of it, but saving that $700 by not ordering the test kit myself was worth the hassle of getting doctor to follow through. The results were obviously mine - I grow my own sweetpotatoes & basil, and use lemon and seaweeds often - and those came out as strong reactions. Chinese medicinal herbs and things such as umeboshi plums that I haven't ingested in decades, but that other people probably never have, showed up as moderately reactive.

Other things didn't make sense to me, as I have never used cosmetics, lotions, chemical soaps, etc. And, once I re-introduced some of the things I had been avoiding, but that the test said were now Non-reactive, I found I still reacted (when I told them I'd gotten a headache about an hour after eating home-cooked shrimp [7 times this year according to my journal, even though I wait a week before eating it again], they said one hour is an IgE reaction and would not show up on their test).

Very shortly after I began totally avoiding everything the test said caused either Strong or Moderate Reactions, I did begin to feel better. But then, 2 months later, I'm feeling worse again (usually one feels worse at first) . Test results come with a lot of good information, including how to avoid reactive items, and rotating herbs and oils as faithfully as we rotate main dishes, a phone consultation with a nutritionist, etc. But I didn't realize they were also going to recommend I get re-tested in 6 months (whopping 10% discount if I get re-tested in under a year), and that I buy Perque expensive supplements. I'm already taking many of the supplements in Perque products recommended, but, since I'm feeling worse again, I may go ahead and try those products. This post is long enough for now!

[JenR1981]

Yes, my naturopath also recommended I get re-tested and buy supplements. I declined both. I will probably get re-tested eventually, but it's not in the budget now. Avoiding foods for six to twelve months didn't eliminate my intolerance. It's been 4 years and still have the same issues, and have added a few unfortunately. However, I know what will cause issues (most of the time) and can decide if I want to cheat.

It's possible the things that showed up on your test from which you don't know the source may be the result of cross-contamination. Xylene showed up on mine, which is in pesticides. I eat as organic as I can, but we're exposed to so much crap in the environment, it's hard to avoid everything.

Wishing you well and good health.