Elisa/act Test

[Mamato2boys]

Hi -

I'm new here. I have a 2 1/2 year old son who is having GI issues, and was diagnosed with milk/egg allergies when he was about a year old. Despite supposedly "clearing" the allergies, having negative stool tests for fat/blood, and a negative celiac blood panel, he still occasionally has bouts of very foul-smelling soft stools/diarrhea that have never resolved. I've always suspected there was an allergy (or maybe even Celiac's) that we've missed. I was told about the ELISA/Act test, and was wondering if any of you have used it. What was your experience ? Did you get the answers you were looking for ? How expensive is it ?

[ravenwoodglass]

Hi -

I'm new here. I have a 2 1/2 year old son who is having GI issues, and was diagnosed with milk/egg allergies when he was about a year old. Despite supposedly "clearing" the allergies, having negative stool tests for fat/blood, and a negative celiac blood panel, he still occasionally has bouts of very foul-smelling soft stools/diarrhea that have never resolved. I've always suspected there was an allergy (or maybe even Celiac's) that we've missed. I was told about the ELISA/Act test, and was wondering if any of you have used it. What was your experience ? Did you get the answers you were looking for ? How expensive is it ?

You may not like my answer but you should know the bad possibilities. I had this test and it was covered by my insurance. In fact I had this test 3 times at different hospitals. I came back negative each time. I was in full blown celiac at the time. Have you tried the diet with him to see if it helps? None of the doctors, GI, Neuro, rheumy, GP suggested the diet because I tested negative. It took over 5 more very sick years before I was diagnosed. I am not saying don't do the test, I am just trying to strongly caution you that a negative does not always mean gluten intolerance or celiac are not there.

[Mamato2boys]

You may not like my answer but you should know the bad possibilities. I had this test and it was covered by my insurance. In fact I had this test 3 times at different hospitals. I came back negative each time. I was in full blown celiac at the time. Have you tried the diet with him to see if it helps? None of the doctors, GI, Neuro, rheumy, GP suggested the diet because I tested negative. It took over 5 more very sick years before I was diagnosed. I am not saying don't do the test, I am just trying to strongly caution you that a negative does not always mean gluten intolerance or celiac are not there.

I'm glad you mentioned your experience, actually. I haven't tried the diet yet because we're in the middle of testing and I'm trying to get an accurate result (if that's even possible). I do know that Celiac's can be tricky to diagnose (and I refuse to put him through a biopsy), but I also want to cover my bases and make sure he doesn't have any additional allergies - I liked how thorough ELISA seems to be.

[Jestgar]

I'd like to point out that an ELISA to measure allergies would most likely be measuring IgE. Gluten sensitivity is an IgA and IgG response. Unless you ALSO have a wheat allergy, it's not likely that Celiac/GSE would show up.

I also noticed when reading up on these that they separate the white blood cells from whole blood to run the tests. I can tell you from my own research that lymphocytes that have been separated do not behave the same as they do when in whole blood. I don't think that answers you'd get from an allergy ELISA would be very much help.

[Mamato2boys]

I'd like to point out that an ELISA to measure allergies would most likely be measuring IgE. Gluten sensitivity is an IgA and IgG response. Unless you ALSO have a wheat allergy, it's not likely that Celiac/GSE would show up.

I also noticed when reading up on these that they separate the white blood cells from whole blood to run the tests. I can tell you from my own research that lymphocytes that have been separated do not behave the same as they do when in whole blood. I don't think that answers you'd get from an allergy ELISA would be very much help.

Yes, I do understand that. I'm looking at the ELISA test for food allergies specifically. I was thinking of using EnteroLabs to check for celiac disease. I've seen quite a few people praise EnteroLabs, but haven't seen anybody say anything about the ELISA test for allergies. We're in the very preliminary stages of sorting out what my son's problem is.

The other issue is the one and only person in my state that does the test is 3 hours away. Kind of a long drive with a 2 1/2 year old just for a blood draw. I may try the EnteroLab first since I can do that one from home.

[Mamato2boys]

I just wanted to add that there are a couple reasons I'm not going right to an elimination diet (though I think trying that does make absolute sense):

1. He's in daycare and although I do have some control over his diet, I don't have the kind of control that I could have if I didn't have to work full-time. He eats some of their food, and some food from home. In order for them to completely eliminate giving him their food, he has to have documentation of his specific condition from a physician - they unfortunately can't just go by what I say. I'd much rather he eat only what I provide for him since I'm not always thrilled with what they serve. Plus he's really starting to notice what other kids eat and has tantrumed in the past (he's 2 1/2) for things like pizza, and even gone so far as to throw his food away when nobody was looking.

2. He has a history of food allergies, and I've always suspected there is an additional allergy that hasn't been tested for. Whether it's actually celiac disease or an obscure allergy - I'm not sure. But his reactions aren't consistent and I've had a REALLY hard time trying to narrow down what it is he's reacting to - which is why I want to try a really thorough allergy test first. He may or may not ultimately have celiac disease, I'm not sure at this point, but I do know at the very least it's pretty common for celiacs to have food intolerances too.

[plantime]

I am biopsy-diagnosed celiac with multiple food intolerances. I have discovered most of the ones I know of by trial-and-error. I spoke to my doc about the ELISA test, and she is looking around to see if she can find an allergist that will order it for me so my insurance will cover it. The ELISA test does not look for IgE responses, it looks for IgG responses. IgE causes the anaphylactic-type symptoms, while the IgG causes the headaches, stomach aches, joint problems, and such. Those are the ones my doc and I are looking for now, as we have found the IgE ones. I will be getting the ELISA test done when I get enough money to order it. A friend of mine had it done, and he felt ABSOLUTELY FANTASTIC on the diet, but hated giving up all of his favorite foods, so he quit doing it. That is what he calls the hardest part of the ELISA test/diet.

[Jestgar]

Sorry to be a little bit obnoxious about this, but technically speaking IgE is an allergic response, IgG is an immune response. Although in terms of what you eat causing you trouble, this difference is irrelevant, but I think everyone should have a clear understanding of what their body is doing.

An IgG ELISA will tell you if your body is producing antibodies against certain foods, but there are two problems with this:

1) Food goes into your stomach, not your blood, so foods that cause you problems may not give a positive response on an ELISA (or a skin test).

2) Foods that give a positive result may not cause you any physiological problems. There is one school of thought that says all people produce IgG antibodies against food - this is what keeps them from becoming allergic (IgE response).

If you are too young or too sick to do a food elimination test, knowing what your IgG responses are might give you a place to start. But don't be fooled into thinking that this bit of science on a plastic plate will give you all the answers to what your body is doing. You are an amazing organism and testing small parts of you can't possibly reveal what the whole being is doing.

J

[Mamato2boys]

Sorry to be a little bit obnoxious about this, but technically speaking IgE is an allergic response, IgG is an immune response. Although in terms of what you eat causing you trouble, this difference is irrelevant, but I think everyone should have a clear understanding of what their body is doing.

An IgG ELISA will tell you if your body is producing antibodies against certain foods, but there are two problems with this:

1) Food goes into your stomach, not your blood, so foods that cause you problems may not give a positive response on an ELISA (or a skin test).

2) Foods that give a positive result may not cause you any physiological problems. There is one school of thought that says all people produce IgG antibodies against food - this is what keeps them from becoming allergic (IgE response).

If you are too young or too sick to do a food elimination test, knowing what your IgG responses are might give you a place to start. But don't be fooled into thinking that this bit of science on a plastic plate will give you all the answers to what your body is doing. You are an amazing organism and testing small parts of you can't possibly reveal what the whole being is doing.

J

You're not being obnoxious at all - I really appreciate your input, as well as everyone else's.

I know that you're right about "positive" foods not necessarily giving your problems. One food he tested positive for was peanuts and he's never had a problem with those or any other nut. That always confused me, so I'm glad you mentioned that.

So if I'm understanding you guys correctly, it sounds like you're saying the best thing is the elimination diet. That of course makes total sense to me, but I'm just concerned with having "official" documentation for the daycare....plus since he's already had foods that are most likely forbidden on the gluten-free diet, it's going to be really hard to now cut those out because he's so young.

I'm just really unsure of which direction to go in now. I'm even questioning if I'm just imagining things and should just leave the poor kid alone. IF he does have celiac disease - he's not a "typical" celiac (I know there's truly no such thing). He's currently 38" (above the 97th percentile) and 41 lbs. (97th percentile), has met or exceeded all of his milestones, talks like crazy, and is otherwise healthy as a horse. He got strep over the weekend, and up until that point had never been on antibiotics, never had an ear infection - nothing. He just has recurrent, intermittent diarrhea/foul-smelling soft stools.

[jerseyangel]

I'll weigh in here with something my Allergist/Immunologist told me when I asked about having a blood test for food intolerance. He said that once we eat a particular food, we develop antibodies to it. That's why there are so many false positives. He recommends the elimination diet approach. He was not being completely closed-minded, as he told me of a facility in the area where I could get the test done if I wanted. He did say that his practice sees patients frequently who have gone that route, and still need to do the elimination diet. In the end, I had skin-prick tests for actual allergies, and did an elimination/trial and error diet to determine my delayed food allergies. I think this is a decision we all have to make for ourselves, this is just my experience.

[Jestgar]

Maybe you can try keeping a diary of exactly what he eats, including demanding lables from what he's eating at daycare. Write down time, amount, etc and also jot down where he has been playing (inside, outside). Keep track of everything that comes out of his body including demanding info from the daycare (they might decide it's easier just to watch what he eats ). At least you'll have something to use to start making connections.

[plantime]

There is a difference between IgE and IgG, and it does matter. How a person feels on a day-to-day basis is very important. If you don't think so, try being run down, achey, and depressed for a few months, then have a day of feeling fantastic. You will see the difference. If certain foods are causing the run down, achey, depressed feeling, then you need to know, so you can stop eating them. The ELISA test will tell you where to start. You eliminate all foods that you have a positive to, then start adding back in foods, starting with the weakest positives. You keep a journal, so you will know which foods are actually causing the problems. The elimination diet is the best, the ELISA test gives you a place to start.

[Jestgar]

I only meant, if it hurts don't eat it, whatever the cause.

[Mamato2boys]

I only meant, if it hurts don't eat it, whatever the cause.

Right - and that's the thing - things he "should" react to, he doesn't seem to, and things he "shouldn't" react to (in other words, hasn't in the past) he'll occasionally seem to react to. I'm suspecting he's having delayed reactions - but exactly to what, I'm not sure of.

[jerseyangel]

Right - and that's the thing - things he "should" react to, he doesn't seem to, and things he "shouldn't" react to (in other words, hasn't in the past) he'll occasionally seem to react to. I'm suspecting he's having delayed reactions - but exactly to what, I'm not sure of.

Those are the delayed food allergies (intolerances) I was refering to. Keeping a food diary is the best way to keep track of his reactions. That way, you can begin to see a pattern--for example, if he is having D two days after eating a certain food, and it is the same reaction after eating the food several times. This method takes time, but is worth it. Otherwise, there dosen't seem to be any rhyme or reason to it.

[plantime]

Ditto Jerseyangel. The delayed reactions are why the journal is so necessary.

[Nevadan]

I would like to reiterate the value of food elimination testing and keeping a food log versus various other lab testing. My experience with food intolerance testing was lots of false positives (how many false negatives I have no idea) and confusion. I did the ELISA IgG food intolerance test with York Labs (I think they have subsequently changed their name) and found (via my own food elimination testing) more false positives than valid results. After lots of reading and discussions my opinion is that the significance of finding several different IgG antibodies in the blood may be to indicate a Leaky Gut as opposed to physiological observable reactions to the specific foods. Leaky Gut can have several causes, gluten sensitivity/celiac disease not the least of them, and is a valid problem in itself. There is a separate test for Leaky Gut which I hear is more reliable, but I have not tried it. In spite of all the hype, mostly by the testing labs and a few allergy doctors, there is little scientific agreement regarding the meaning of finding IgG antibodies in the blood. If a food particle gets into the blood, it is perfectly normal for the body to generate IgG antibodies to try neutralize the particle. A more relevant question may to ask how it got there.

One can spend lots of money on various tests, but most will end up doing the food elimination test themselves for an accurate result. I find keeping a food log very helpful.

[shayesmom]

I would like to reiterate the value of food elimination testing and keeping a food log versus various other lab testing. My experience with food intolerance testing was lots of false positives (how many false negatives I have no idea) and confusion. I did the ELISA IgG food intolerance test with York Labs (I think they have subsequently changed their name) and found (via my own food elimination testing) more false positives than valid results. After lots of reading and discussions my opinion is that the significance of finding several different IgG antibodies in the blood may be to indicate a Leaky Gut as opposed to physiological observable reactions to the specific foods. Leaky Gut can have several causes, gluten sensitivity/celiac disease not the least of them, and is a valid problem in itself. There is a separate test for Leaky Gut which I hear is more reliable, but I have not tried it. In spite of all the hype, mostly by the testing labs and a few allergy doctors, there is little scientific agreement regarding the meaning of finding IgG antibodies in the blood. If a food particle gets into the blood, it is perfectly normal for the body to generate IgG antibodies to try neutralize the particle. A more relevant question may to ask how it got there.

One can spend lots of money on various tests, but most will end up doing the food elimination test themselves for an accurate result. I find keeping a food log very helpful.

Nevadan, that was eloquently put and I couldn't agree with you more. Although testing may bring some "definite" answers to the table, in some cases it can confuse the issue (like when you get negative Celiac panels and then positive results to the diet). The ultimate problem comes between the time spent testing and the time it takes to do an elimination diet. Many people do not pursue the elimination diet for years due to lab results of one test or another telling them that food is not the source of how poorly they are feeling.

If a food issue is suspected, it is perfectly fine to test. But at some point soon thereafter, the food journal and food elimination diet should be done to not only verify test results, but to see if there is something else contributing to the problem.

As for Leaky Gut.....gluten and casein have a direct effect on the permeability of the intestine via zonulin levels. If the ELISA test did show several IgG reactions, it would make sense to question WHY??? those antibodies are there.

Mamato2boys, as far as documentation goes for your daycare I have a suggestion. Should you do the elimination diet and ds would improve being gluten-free......why not talk to your pedi about it? I am sure that he would assist you in getting proper medical documentation for daycare and whatever else. There are doctors out there who still listen to their patients and some even diagnose gluten intolerance based on a positive dietary response. From everything you've told me about your pedi....I think he would be willing to help you here should you need some backing.

As far as ds throwing out his food because it is not the same.....I think part of that will depend on how he feels, how good his substitutions are and the approach the adults around him take in order to minimize the differences. Better to discover a major intolerance now as opposed to later. Also, should he feel better gluten-free, you may be surprised that he helps you in keeping him that way. Shaye is all of three and she tells adults who offer her food that her things need to be gluten and dairy-free. The adults are inevitably shocked and yet she understands that gluten and dairy make her feel terrible. This bothers my mom somewhat (as she is still uncomfortable with the "severity" of the diet). But quite honestly, I am THRILLED that dd is now able to actively help me, help her.

[Mamato2boys]

Nevadan, that was eloquently put and I couldn't agree with you more. Although testing may bring some "definite" answers to the table, in some cases it can confuse the issue (like when you get negative Celiac panels and then positive results to the diet). The ultimate problem comes between the time spent testing and the time it takes to do an elimination diet. Many people do not pursue the elimination diet for years due to lab results of one test or another telling them that food is not the source of how poorly they are feeling.

If a food issue is suspected, it is perfectly fine to test. But at some point soon thereafter, the food journal and food elimination diet should be done to not only verify test results, but to see if there is something else contributing to the problem.

As for Leaky Gut.....gluten and casein have a direct effect on the permeability of the intestine via zonulin levels. If the ELISA test did show several IgG reactions, it would make sense to question WHY??? those antibodies are there.

Mamato2boys, as far as documentation goes for your daycare I have a suggestion. Should you do the elimination diet and ds would improve being gluten-free......why not talk to your pedi about it? I am sure that he would assist you in getting proper medical documentation for daycare and whatever else. There are doctors out there who still listen to their patients and some even diagnose gluten intolerance based on a positive dietary response. From everything you've told me about your pedi....I think he would be willing to help you here should you need some backing.

As far as ds throwing out his food because it is not the same.....I think part of that will depend on how he feels, how good his substitutions are and the approach the adults around him take in order to minimize the differences. Better to discover a major intolerance now as opposed to later. Also, should he feel better gluten-free, you may be surprised that he helps you in keeping him that way. Shaye is all of three and she tells adults who offer her food that her things need to be gluten and dairy-free. The adults are inevitably shocked and yet she understands that gluten and dairy make her feel terrible. This bothers my mom somewhat (as she is still uncomfortable with the "severity" of the diet). But quite honestly, I am THRILLED that dd is now able to actively help me, help her.

Vicky, I can't believe I didn't think of that angle - just trying the diet and then getting his pedi to document for me. Talk about overlooking the glaringly obvious !! You are so right - I think he would be more than happy to help out with that. I am so fortunate to have a true gem for a pediatrician ! I'm literally sitting here with my mouth open because I can't believe I didn't think of that myself. I was so focused on the idea that I was on my own in this that it didn't even occur to me to ask for his help.

Can you guys point me in the right direction for beginning the elimination diet - or maybe point me to a post that outlines it ?

Thank you so much for all of your help. Sorry I've been a bit hard-headed about it. It's so hard to let go of ideas about the medical establishment that you were raised with.

[plantime]

I would like to know where and how to begin an elimination test, too. My doc told me to use the ELISA test for a starting place, but if it can be done without the test, I'd like to try it.

[shayesmom]

Vicky, I can't believe I didn't think of that angle - just trying the diet and then getting his pedi to document for me. Talk about overlooking the glaringly obvious !! You are so right - I think he would be more than happy to help out with that. I am so fortunate to have a true gem for a pediatrician ! I'm literally sitting here with my mouth open because I can't believe I didn't think of that myself. I was so focused on the idea that I was on my own in this that it didn't even occur to me to ask for his help.

Can you guys point me in the right direction for beginning the elimination diet - or maybe point me to a post that outlines it ?

Thank you so much for all of your help. Sorry I've been a bit hard-headed about it. It's so hard to let go of ideas about the medical establishment that you were raised with.

I think that when it comes to dealing with food issues, many of us feel like we're "on our own" and so it's understandable that the thought of working with your pedi on this didn't cross your mind. lol!! But I think that your pedi is a good one and he should be able to offer support and backing should you endeavor to give this a try. He's well aware of your situation.

As for elimination diets....there are several different schools of thought. It just depends on how "accurate" a reading you want to get and how much time you have to devote to it. One method is the Feingold diet which basically pulls out every potential "allergen" all at once. You continue this for about 10 days and then begin adding one food back in at a time. One every 3-5 days (to catch any delayed reactions). You document reactions to each food as you go. If a food does not cause a reaction, you add it into your acceptable foods. If there is one, you keep it out during the remainder of the trial. This method can be time consuming and requires a lot of upfront prep work (as the foods allowed can seem very limited). However, it is very accurate and if multiple allergies are at work, it may save time in the long run. I do not know if there's an acceptable order of foods to be re-introduced but I would strongly urge anyone trying this method to save casein and gluten as the last two foods that they add back in (gluten intolerances are famous for mimicking other food allergies due to the role of gluten in creating a permeable gut as well as blood/brain barrier).

The other method is basically to food journal and pull out one potential allergen, one at a time for about 4-7 days each. If you see improvements when removing a particular food, keep it out for the remainder of the trial. This method gives you a bit more flexibility in meal planning but can end up taking much more time to find any offensive foods. I did this with my dd and have regretted it quite often as far as "new" allergens showing up weeks and months into the trial and having to do a lot more guesswork as to what could be the real problem. It seemed like we had to start over at several different points. Then again, we started with wheat only. Dd seemed fine with other glutinous grains at first but within about a month and a half, all the gluten grains ended up coming out. As the system detoxifies and you pull major problematic foods, you will see a much more consistent pattern of reaction to some of the "lesser" intolerances.

HTH for those thinking of trying the diet and I hope I didn't miss anything major!

[kabowman]

For me, I used a combination - I went down to plain foods with some extras and kept track (food diary that was a pain but worked) of all reactions, even ones I didn't think were connected to my food. It worked.

I did that with my son, more limited, and did a lactose challenge - it worked. He is lactose intolerant and must take 3 lactaid pills for any dairy he consumes except lactaid milk.

I called his pediatrition this morning and set up an appointment for Monday morning (his doc is on vacation this week) to discuss gluten free and get blood tests done.

My son is almost 13 and came to the decision himself, I have suspected for a while but if he can go to his dads and eat anything and then come home and be sick for days, it helps to have his buy-in. His father refuses to accept he has any food issues and continue to give him all milk products so if my son won't push the issue then I am just beating my head against the wall, really.

Anyway, he finally started to get so sick from eating his gluten filled cereal and lunch (dinners are gluten-free and he is only gluten-free for breakfast if he eats eggs with us and when he does, he needs 6-7 eggs per morning, and he is scrawny, on the low end of the growth cart!) that he was willing to try.

After his appointment so we can have accurate blood tests, I will have him go gluten-free for a gluten challenge diet - gluten-free for a week or so, or until he goes back to his dads, then add it back in and see what happens

[Mamato2boys]

As an update - I spoke with my son's pediatrician and told him I was considering trying an elimination diet in the near future. I'm currently 36 weeks pregnant, so it may have to wait until after the baby's born. At any rate, I asked if he would be willing to document my findings so the daycare could "legitimately" allow me to custom-make a special diet for him. He smiled and said "Oh absolutely - no problem. You just let me know."

Thanks again Vicky for pointing out a glaringly obvious solution to the daycare problem. Like I've said, I've been so focused on having to go this alone that it didn't occur to me to tap into the valuable resource I already have. After reading so many stories on here, it's really made me realize just how incredibly lucky I am to have a supportive pediatrician who wants to learn right along with me and help as much as he can.

[aprilh]

I just wanted to add that there are a couple reasons I'm not going right to an elimination diet (though I think trying that does make absolute sense):

1. He's in daycare and although I do have some control over his diet, I don't have the kind of control that I could have if I didn't have to work full-time. He eats some of their food, and some food from home. In order for them to completely eliminate giving him their food, he has to have documentation of his specific condition from a physician - they unfortunately can't just go by what I say. I'd much rather he eat only what I provide for him since I'm not always thrilled with what they serve. Plus he's really starting to notice what other kids eat and has tantrumed in the past (he's 2 1/2) for things like pizza, and even gone so far as to throw his food away when nobody was looking.

2. He has a history of food allergies, and I've always suspected there is an additional allergy that hasn't been tested for. Whether it's actually celiac disease or an obscure allergy - I'm not sure. But his reactions aren't consistent and I've had a REALLY hard time trying to narrow down what it is he's reacting to - which is why I want to try a really thorough allergy test first. He may or may not ultimately have celiac disease, I'm not sure at this point, but I do know at the very least it's pretty common for celiacs to have food intolerances too.

You may find that some of his other allergies clear once you deal with the gluten/wheat (not sure of the difference at this point) I too have the same problem with my son. I am suspecting he has celiac, but since he is in daycare, it is very hard to control the diet. I already have him on a dairy free diet at his school. They have a hard time with it sometimes. So to put him on a wheat free would send them for a loop.

What confirmed it for me was when I was at the beach in June, He went wheat free and I noticed an improvement. (less loose poopy diapers, no more diaper rash, etc) Maybe you could go on vacation and do a little at home wheat free test and see what happens.

[NanCcan]

ELISA/ACT is different from Elisa or IgG testing.  It tests lymphocyte response.

 I am one of those who can tell when some foods are causing reactions.  I’ve tried IgG4 testing and found the positive results are usually spot-on, while the negative results can sometimes mean I have just avoided that food recently.  However, I wonder what anyone here can tell me about their experiences with lymphocyte response assay (LRA by ELISA/ACT) tests?

I cannot do the elimination diet test because I have a family to cook for,  but I have kept a journal of food and other daily inputs, symptoms, weather, sleep, etc. for over 10 years.  It is still nearly impossible to pinpoint most foods (or more likely combinations of foods) that cause my delayed symptoms.