Leap Testing

[liljules5]

Has anyone had the LEAP testing done? Open Original Shared Link has more information. My GI is having me do this testing and I was wondering if anyone else has experience with it. It seems like it should be good.....

[liljules5]

Well I dont know if anyone even looked at this topic, but I had the testing done and it is such a good test. They test your blood for about 150 different foods and the reaction levels. I found out that among many other things I have to cut out cranberries, blueberries, strawberries, turkey, peanuts, zucchini, white potatoes, rice, watermelon.....etc....the list is about 40 things long! If anyone has questions just PM me. I highly suggest asking your doctor about the test if you are still having symptoms. I am on an elimination diet that is part of the program and I have to eat my non reactive foods and slowly add in 1 food per day of my least reactive foods until I have the foods I can eat. They rate the foods moderate, severe, and nonreactive. I cant eat the moderate or severely reactive foods.

[musikate]

Hi,

We with unremitting symptoms are quite vulnerable to dubious claims. I do not know if this program is legitimate, but it certainly has a list of creditialed physicians on board. I do not, however, see a lot of clinical studies that support it. There are testimonials galore, but you can find testimonials for just about anything out there, from snake oil to drinking Drano!

It would seem that in order to design a truly blind clinical study, there would need to be three test groups. One would be a control group that did not change anything. Another would be the test group, which would follow the LEAP Program. A third, and most important group, would be given all the tests, given a list of ingredients that were forbidden, but they would have been produced randomly. That way this "placebo group" would believe they were on the LEAP Program. The physicians, patients, and all other staff would have to be blind as to who was on the "real" program and who was on the "placebo" program. If this trial were done with a large enough group of people and were replicated successfully, then a significant positive result for the Leap group over the placebo group would be meaningful. I see no evidence that such testing was done. I would no more spend my time or money on such an untested "cure" than I would spend it on sending Madonna to Mars.

No matter how desperate your physical situation is, don't let yourself be taken in. Insist on clinical trials and published studies in reputable medical journals!

I'm off my soapbox now.

[liljules5]

I did this through my GI and notice a difference already. We can have our own opinions, but since this is helping me feel better, I'm all for it.

[musikate]

I repeat my assertion,

It would seem that in order to design a truly blind clinical study, there would need to be three test groups. One would be a control group that did not change anything. Another would be the test group, which would follow the LEAP Program. A third, and most important group, would be given all the tests, given a list of ingredients that were forbidden, but they would have been produced randomly. That way this "placebo group" would believe they were on the LEAP Program. The physicians, patients, and all other staff would have to be blind as to who was on the "real" program and who was on the "placebo" program. If this trial were done with a large enough group of people and were replicated successfully, then a significant positive result for the Leap group over the placebo group would be meaningful.

Where is the hole in this logic? Perhaps you could ask your GI if he has results of clinical studies that were performed in a responsible manner. Opinions are for hairstyles and draperies, not health care.

[musikate]

Here's a good article on the subject, which lists LEAP testing specifically as a dubious claim. It is also listed as "investigative" on Blue Cross's policy manual (just curious: did your insurance pay for these tests?).

Open Original Shared Link

[Rachel--24]

I haven't read anything about LEAP testing that would lead me to believe it has any validity. I'm surprised a GI doc would order this type of testing???? If it makes you feel better though....who am I to question.

[Nantzie]

Hmmm... This thread concerns me.

Why, on a board where people have been sick for years, and who have had to rely on their own research and the open-mindedness of physicians to even get someone to listen and understand enough to even do the tests that might reveal a diagnosis of something like celiac disease, would they then scold someone who is basically offering her positive experience with a new form of allergy testing / elimination diet that her GI is open-minded enough to try?

I'm all for alternatives when it comes to the management of chronic conditions. But there are a lot of things out there that are dangerous and complete scams. So you HAVE to do your research. When I am evaluating a possible alternative treatment for something, I ask myself two things: What is the worst that could happen? and (2) what are the possible benefits. When it comes to herbal concoctions and things of that nature, I research every ingredient. I look at the medical research on those ingredients and cross-check it against medical problems (I do this for a lot of friends and relatives). I have told people no WAY more than I've told people yes, by the way.

But with something like this where it's not some kind of herbal concoction or something, when I ask the question what is the worst that could happen and it's that a person might find out that they might feel better if they don't eat blueberries....? What on earth is the possible harm?

When someone like quackwatch says that something SHOULDN'T work or that there is no evidence that it will work, that tells me one thing. THEY have never tried it or been told positives or negatives by someone who HAS tried it. I personally think that that is pretty shabby.

It's like things like this LEAP testing or even board certified acupuncture, or reiki, bowen therapy, faith healing, prayer, NAET, kinesiology, massage, where there is absolutely NO harm that could possibly happen in just giving it a try if you want to, that really concerns me when I hear people do this to someone who has tried it and is just sharing a positive experience.

But when someone says they're going to try some kind of herbal concoction that for all they know could be made by some guy in his basement, THAT is the time to screech the tires and say to someone - Hang on! Where's the research? What's in it? Does your doctor have any supporting data? What does quackwatch.com say about it?

And as far as money, some people have extra to spend and some people don't. I can tell you from personal experience though that when you're unhealthy or dying and there is nothing that can be done about it, money is about as worthless as the dirt under my feet. If all it would have taken for my dad to survive his cancer was a truck full of money, he would have been alive today because we would have found a way to get the money. But there was no treatment to be had. So even if we had a million dollars it wouldn't have helped.

So for me, gambling some money on some well-researched or doctor-recommended unproven treatment that won't hurt me, but might help me feel better is a well-placed bet. You win some and you lose some. But if it won't hurt then why the heck not?

Well, maybe I shouldn't have spoken up because I'm new, but this, on a board for a disease that some doctors don't even believe exists, really, really irked me.

So add me to the people on the thread who are saying - Liljules, I think that's great. I'm glad you had positive results. Let us know how things go.

Nancy

[Rachel--24]

Nancy,

I certainly wasn't "scolding" anyone. If it works for her I think its great. I'm simply saying that all I've read regarding those tests is negative. I wasn't spefically looking for info. regarding LEAP but when searching for accurate methods of allergy/sensitivity/intolerance testing I've seen LEAP mentioned numerous times as being a scam type of testing....totally unreliable and unproven. Like I said...I never saw *anything* to make me believe in its validity...and I am a very open-minded person. If the "alternative" type doctors question this type of testing then I have to say..."Wait a minute...somethings not right about it."

[musikate]

"So for me, gambling some money on some well-researched or doctor-recommended unproven treatment that won't hurt me, but might help me feel better is a well-placed bet. You win some and you lose some. But if it won't hurt then why the heck not?

Well, maybe I shouldn't have spoken up because I'm new, but this, on a board for a disease that some doctors don't even believe exists, really, really irked me."

I just want to address a few of my concerns about that point of view. It certainly is NOT personal, in fact, I find it enriching to discuss these things with the object of finding the most defensible position.

Nancy, when you suggest that this program is "well-researched," I tend to be skeptical. Show me the studies. My point was that a program like this is NOT well-researched unless it has been studied in a double-blind clinical setting with reproducible results. If you are wealthy enough not to be concerned about gambling your money, congratulations. But do you want that money to enrich a dishonest, unethical huckster who takes advantage of the chronically ill for personal gain? And who are these doctors who recommend these treatments? If you ask them about the clinical studies, do they squirm and shift their eyes? What do their collegues think of them?

Regarding the statement, "a disease that some doctors don't even believe exists," I have never heard of a doctor who doesn't believe celiac disease exists. I find that hard to believe. Exaggerrations of that sort don't support your argument. Just because there are doctors who underdiagnose celiac disease does not mean that the entire profession is corrupt or worthless.

In conclusion, I would suggest that it is a widely-held misconception that alternative therapies are "harmless at worst and helpful at best." If there is a lack of conclusive evidence that a therapy works, then anyone selling it is a criminal and anyone buying it is a victim. The time spent in pursuing these therapies is better spent researching medical journals or resting quietly in bed. If the money is disposible to you, then give it to charity rather than to those who would rob us of our health.

[Nevadan]

I read lots of valid points being made in this thread. While on the topic of testing, what about York Nutritional Labs food sensitivity testing? Seems they have some credibility based on some evaluations in England. I recently signed up for their testing but haven't received my sample collection kit yet. Just curious.

As has been previously stated, if a "treatment" makes you feel better and doesn't involve anything likely to cause long term problems, then why not? After all most of us are trying to feel better, not validate some testing method.

George

[pixiegirl]

I know someone that had this sort of testing done.. and it turns out according to the testing that they are allergic to virtually everything. For years they are eating a diet of meat fish and rice, very few fruits and veggies as the testing showed they were "allergic" to them.

Well after a few years of such restrictive eating they tired of it and started looking into things further, allergy skin testing, some food allergy blood testing (which i believe is in itself controversial) and best of all an elimination diet. Guess what, almost all the foods that she avoided for years she can eat with no problems at all.

However, I don't think one should be afraid to post to the list about something they found out about or something that is new but I think we need to be very careful with what we believe is true without scientific testing of some sort. I don't think western medicine is the be all and end all of medicine and I'm open to and use various alternative medicines but I'd be wary if I showed up allergic to all sorts of stuff without further testing. I have a daughter with various food allergies (peanut and tree nut) and I know that any allergy testing has to be taken with a grain of salt. She showed up as having a mild reaction to certain shell fish (like shrimp and lobster) which she eats all the time with no problems (no hives, belly aches or personality changes).

Certainly taking blueberries out of your diet isn't going to be a problem (well they are just about the best antioxident food out there) but why be so darn restrictive if you don't have to be. I'm glad you feel better but if we aren't talking anaphylactic shock, then I think testing these things via elimination diet would be helpful as well.

Any how I'm glad your feeling better.

susan

[Rachel--24]

I read lots of valid points being made in this thread.  While on the topic of testing, what about York Nutritional Labs food sensitivity testing?  Seems they have some credibility based on some evaluations in England.  I recently signed up for their testing but haven't received my sample collection kit yet.  Just curious.

<{POST_SNAPBACK}>

I did this type of testing...is it the IgG delayed-onset type your talking about? I did that test with Great Smokies...I didn't get a kit though..I had blood drawn at the doctors. Maybe you don't need a doctor to order the test through York? I've heard good things about them by the way.

I had the test done 5 months back (pre-dx)...at the time I felt I was allergic to everything but oddly the test showed no significant sensitivities. It came back with only a very low reaction to alfalfa and mustard. I was like "What the heck is that all about?" I figured the test must be bogus since I was clearly reacting to everything. My doc and I were just discussing this the other day and how now with my Gluten Intolerance dx those results actually DO make sense. I was only reacting to everything because my body was so messed up from gluten and I was still on gluten at that time. I think a test is only 100% accurate if it can be duplicated with the same results. York claims they can do this so I think these tests are as close as you can get since nothing is really 100% as far as sensitivities go.

[Nevadan]

Rachel,

Yes, the York Nutritional Labs does IgG food intolerance/testing testing. Their claim to fame is that they can test for 100+ sensitivities from a pin-prick blood sample. Their website discusses their testing validation via multiple double blind clinical trials - sounds good. Your experience with gluten seems to make sense relative to your IgG testing. I'm interested in seeing my results from York and see how they mesh with my Enterolab results.

George

[Rachel--24]

Rachel,

Yes, the York Nutritional Labs does IgG food intolerance/testing testing.  Their claim to fame is that they can test for 100+ sensitivities from a pin-prick blood sample.  Their website discusses their testing validation via multiple double blind clinical trials - sounds good.  Your experience with gluten seems to make sense relative to your IgG testing.  I'm interested in seeing my results from York and see how they mesh with my Enterolab results.

George

<{POST_SNAPBACK}>

I'm curious to know how your results come back. Thankfully I'm not reacting to any foods now (that I'm aware of). I'm feeling alot better and have gained over 10 lbs. If I'm glutened I'm sensitive to foods for a few days while I recover. Obviously I had so much malabsorption from the gluten that I must have had damage causing me to react to everything. I'm curious if it would've been cheaper for me to use York rather than Great Smokies. My test was $350...is York in the same range? Well even though I only reacted very low to the alfalfa and mustard...I'm still avoiding them...which isn't really hard to do. Especially with the alfalfa!!!

[Rachel--24]

Oh yeah...this always makes me laugh. Great Smokies sends an info. packet with the results and a little card to carry around listing all of your sensitivities and the various levels of those sensitivities. So I have this card that just says Alfalfa 1+ & Mustard 1+ and then big empty blank space. Out of over 100 foods thats what I got! I'm definately not complaining about it though.

[liljules5]

Yes, my insurance covered part of the test....not all of it. I think we have to trust our own doctors especially if they have produced reliable information so far. I got diagnosed with celiac disease within 3 weeks of first seeing this doctor and I trust him and what he feels is the best steps for me to take. Even if this test doesnt have as much research in the US, I read that they use the same type of test a lot in Europe. My doctor did say it's fairly new technology in the US, so that may be why there arent as many studies. All I know is that I am feeling better already from eliminating the said foods and when I accidently ate one of them, I did have a reaction. I'm game for whatever helps me feel better overall................

[Nevadan]

Rachel,

The York Nutritional Labs website is Open Original Shared Link

It is rather informative much like Enterolab website. It includes pricing.

I'll post my results when I get them - I'm still waiting for the collection kit.

George

[Bette]

Rachel,

Yes, the York Nutritional Labs does IgG food intolerance/testing testing.  Their claim to fame is that they can test for 100+ sensitivities from a pin-prick blood sample.  Their website discusses their testing validation via multiple double blind clinical trials - sounds good.  Your experience with gluten seems to make sense relative to your IgG testing.  I'm interested in seeing my results from York and see how they mesh with my Enterolab results.

George

<{POST_SNAPBACK}>

George,

Make sure and keep us informed about your results. I do not know where to start as far as testing for other food intolerances for me and my daughter. She had been skin allergy tested for airborne allergies, but her pediatrician and her GI will not order any test for her (something that would be covered under her insurance), stating there is no accurate way to measure if there is a true food intolerance other than eliminating the foods. I am sure you have done your research why did you choose York over Great Smokies lab-just curious??

Bette

[Nantzie]

Hi Musikate and everyone,

I didn't get a chance to get back to this board yesterday. It's not usually like me to stir things up and then leave. Sorry bout that...

"I just want to address a few of my concerns about that point of view. It certainly is NOT personal, in fact, I find it enriching to discuss these things with the object of finding the most defensible position."

I agree.

Nancy, when you suggest that this program is "well-researched," I tend to be skeptical. Show me the studies. My point was that a program like this is NOT well-researched unless it has been studied in a double-blind clinical setting with reproducible results.

What I meant by well-researched was well-researched by the person considering that option. Not research from the medical standpoint. I research the heck out of everything, so when I decide to use an alternative treatment, I've put a lot of time into learning about it. What I should have said was that if a person is considering an alternative treatment, they should really do their homework, and only then should they make a personal decision if it is something that they feel is safe to try.

If you are wealthy enough not to be concerned about gambling your money, congratulations. But do you want that money to enrich a dishonest, unethical huckster who takes advantage of the chronically ill for personal gain?

I never said I'm wealthy. I'm definitely not wealthy. But if I found out that there was a medical treatment for his cancer that may have helped him but just wasn't covered by insurance? I would have refinanced my house, or got a second mortgage, or gotten a job to help pay for it. And I say medical treatment because I firmly believe that cancer is nothing to screw around with. There are some alternative treatments that can help alleviate symptoms a little, but when it comes to something like cancer, you go to your doctor and you do your chemo. Anyone who says otherwise may end up getting you killed. Most oncologists are all for whatever it is that can help you feel better. My dad's doctor knew all about everything he was taking and doing alternatively, along with the traditional cancer treatment.

Sorry, went off on a tangent there. But you see what I'm saying.

And as far as hucksters? You're darn right about that. There are plenty of them. But there are also plenty of good, caring, wonderful people out there that have a science or technology background and develop supplements and alternatives because they themselves, or their kids, or other family members have struggled with a chronic illness and they just want to help. There are also M.D.'s out there who are committing insurance fraud and are just in it for the money. That doesn't mean all doctors are jerks. You could also make the argument that the FDA and the pharmaceutical companiees are just out to make money. Well, I don't believe that either. I think that no matter who you are you have to exchange your time for money because everybody has bills to pay. If you work in an office, you're not going to do it for free. If you're a teacher, you're not going to do it for free. If you're a doctor, you're not going to do it for free. And it's not because you're not passionate and caring about your job. It's because you've got bills and mouths to feed too. Not everyone is out to play a con game. But since you don't know who is and who isn't, you've got to do your research when you step outside the traditional.

And who are these doctors who recommend these treatments? If you ask them about the clinical studies, do they squirm and shift their eyes? What do their collegues think of them?

I think that if I have a doctor I trust, who has an MD behind their name, I place a lot of value in what they have to say and what they recommend.

"Regarding the statement, "a disease that some doctors don't even believe exists," I have never heard of a doctor who doesn't believe celiac disease exists. I find that hard to believe. Exaggerrations of that sort don't support your argument. Just because there are doctors who underdiagnose celiac disease does not mean that the entire profession is corrupt or worthless."

I'm actually referring to those doctors who would have been jerks no matter what they did for a living. I've worked in doctor's offices before (medical transcriptionist) and there were a couple of them weren't even wanting to look into diagnosing IBS, chronic fatigue and fibromyalgia as recently as 5 years ago. There are some doctors who just think they know everything there is to know about everything, even though they're not even keeping up on their journal reading and CME's. Thank goodness that type of doctor is rare, but they're out there, just like there are people who really don't care about anything but their ego and their pocketbook in every profession. I didn't mean to make it sound like I was one of those people who are anti-MD or anti-pharmaceuticals. Because I'm not. But there are a lot of people who are, so I see where you thought that's what I was trying to say.

"In conclusion, I would suggest that it is a widely-held misconception that alternative therapies are "harmless at worst and helpful at best." "

I agree. I think that is a dangerous assumption. A medicinal herb is a non-standardized drug. Many pharmaceuticals are synthsized versions of plants. For example, a common heart drug was originally foxglove. But just because something is natural doesn't mean it can't harm you, or even kill you. I have low blood pressure, and there are a lot of supplements I can't take because they help control HIGH blood pressure. I got sideswiped not long ago by wheatgrass juice. It never even occured to me that it would be something I should even think twice about. I mean, it's juice ... You buy it in the grocery store. I ended up almost passing out because it helps lower blood pressure.

"If there is a lack of conclusive evidence that a therapy works, then anyone selling it is a criminal and anyone buying it is a victim."

I completely disagree. I've gone on and on (and on...) about that above, so I'm not going to restate anything here.

"The time spent in pursuing these therapies is better spent researching medical journals or resting quietly in bed."

I think that since you're not comfortable with alternatives, that's great that you keep up on medical research. But just like some people don't have money to spend, some people don't have time to spend resting or reading. One of my friends has IBS and fibromyalgia (may have celiac disease, but haven't had a chance to talk to her about it.) She also is a single mom of three kids. So she doesn't have time to rest or read or do pretty much anything. But I do see what you're saying.

"If the money is disposible to you, then give it to charity rather than to those who would rob us of our health."

I realized it seemed like I was saying I was rich or something earlier. But if you've got money to spend, AND you're comfortable with alternatives, why not do both. Not everyone is out to get you.

Anyway. That's my two cents.

I think that one of the things that really got me started on this was that the original poster asked her question on whether anyone had tried this back on Aug 1st (a month ago) and nobody answered her. Then it was like - why did you go and do that, I heard this, and I heard that, and you probably shouldn't trust the results. That would have been a lot more helpful a month ago. But I think we've all been around on message boards long enough to know that sometimes a post just gets inadvertantly not answered. I know you're new too, so I'm not saying that YOU should have answered her. I'm just saying that the things in your post probably would have been very helpful to her in making her decision back then.

Have a good week.

Nancy