Restrictive diet/arguing with test results

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Several years ago, when ME first hit, I had a "Wheat Zoomer" panel done. It showed problems with gluten, including, purportedly, antibodies. Well, I was good, eliminated wheat and gluten from everything for nearly a year. Then couldn't handle the expense or lack of taste any longer, and despite the doctor warning of "severe reaction", I went back on wheat. Nothing happened. Symptoms didn't get better or worse.

Fast forward, and a new functional medicine doctor put me on the ClearVite diet. Well, to cut a long story short, I had more gas, bloating, increased pain, worse POTS. So, after sticking it out 2.5 of the 3 weeks, quit. During that time, I was off gluten, dairy, tomatoes, corn, eggs--felt like I was eating avocados and the atrocious Clearvite shake, and salad. No improvements. Once I went off the stuff, I cautiously started adding things back in, noting if there were problems. Nope.

SO, two questions. What's the accuracy of the Wheat Zoomer, anyone know? I wrote to the UK ME Association, and their wonderful health and nutrition consultant wrote back to say that restrictive diets for the most part aren't useful. If I have these supposed antibodies, wouldn't there be some form of reaction when I eat gluten?

I'm so confused....
 

Hip

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I don't know anything about this Wheat Zoomer test (what does "zoomer" mean?), but the NHS say:
Is there a food intolerance test?
There are no tests for food intolerances. The only way to know if you have one is to monitor your symptoms and the food you eat. See what happens when you cut out the suspected food for a while, and then reintroduce it back into your diet.
 
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@lllamamom the best test for gluten sensitivity I know of is Cyrex Array 3. It tests several different parts of the wheat protien, so it's quite comprehensive. You might get your ClearVite doc to order it for you.

Speaking of ClearVite, I did the clearvite diet too, but it helped me (I actually still eat that way for the most part). It took about a month for me to see the difference. But then again I have major issues with gluten too. It's strange that it would have caused issues for you as it's just a non-processed food diet. I actually think ClearVite is pretty strong, so maybe it was that, and not the food.
 
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Wheat
I don't know anything about this Wheat Zoomer test (what does "zoomer" mean?), but the NHS say:
Zoomer is the name of the particular test by Vibrant Health, here in the US.

My problem with it is that, according to the literature, I should have been experiencing some gastrointestinal symptoms before. Nope. And after the months off gluten, I would have expected some noticeable symptoms, if gluten truly was a problem.
 
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@lllamamom the best test for gluten sensitivity I know of is Cyrex Array 3. It tests several different parts of the wheat protien, so it's quite comprehensive. You might get your ClearVite doc to order it for you.

Speaking of ClearVite, I did the clearvite diet too, but it helped me (I actually still eat that way for the most part). It took about a month for me to see the difference. But then again I have major issues with gluten too. It's strange that it would have caused issues for you as it's just a non-processed food diet. I actually think ClearVite is pretty strong, so maybe it was that, and not the food.
Glad to hear it helped you! We naturally eat a lot of salad, or lightly processed food.

I will confess to being worn out by the current apparent popularity of restrictive diets here in the US, to the point it seems if you eat a sensible but inclusive diet, you’re considered ill before true testing.
 

Hip

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Zoomer is the name of the particular test by Vibrant Health, here in the US.
So "Zoomer" just a marketing term rather than a term with any medical or scientific meaning? That would put me off the lab. If I saw a lab offered a "cytomegalovirus turbocharged antibody test" it would not inspire any confidence in the lab!

Have this lab's tests been validated by any published studies? There are lot of lab tests out there of dubious quality.


The gold standard for detecting food intolerances is the elimination diet (which can take a few months to do, but it does not cost anything).
 
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Timaca

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My understanding is unless you have a true IgE food allergy (which may (should) show up in a skin prick test or blood test) you can't tell if you have a food intolerance unless you eliminate the suspected foods, wait for a month, then reintroduce them.

I had blood tests to lots of foods but what I ended up being truly intolerant to (via food challenge) was different than what the blood test showed.

Recently I've been able to add foods back in that I could not tolerate for years (berries, corn and nuts / seeds).

Currently I am eating whole food plant based (WFPB) but no gluten, oats, peanuts. I am trying to add walnuts back in. Next I will try peanuts. I did have the worst reactions to wheat, oats and peanuts so I will try those carefully. I do hope to retest oats before July when I go on a trip (it would be helpful to be able to eat oatmeal in the mornings). I may never retest wheat again though....we'll see how the other tests go....

It is great that you can eat wheat. There is no reason to avoid a food if you don't have to!!
 

Wishful

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The last time I asked about skin prick tests, the allergist admitted that they were about 50% accurate. In other words, instead of a skin test, you could flip a coin, and have the same confidence in the number of false positives and negatives. Unless your sensitivity is life-threatening, self-testing, with proper double-blind methods, seems to me the most reliable method of determining your allergies or sensitivities.
 
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So "Zoomer" just a marketing term rather than a term with any medical or scientific meaning? That would put me off the lab. If I saw a lab offered a "cytomegalovirus turbocharged antibody test" it would not inspire any confidence in the lab!

Have this lab's tests been validated by any published studies? There are lot of lab tests out there of dubious quality.


The gold standard for detecting food intolerances is the elimination diet (which can take a few months to do, but it does not cost anything).
That was my point, that eliminating the gluten, then adding it back, showed no difference. As to cost, though, we found that the bread, noodles, soups, etc that were truly gluten free were at least double the cost of "normal", which on our limited budget, was quite a hit.

As for the accuracy of the Wheat Zoomer, I found this: https://www.holisticprimarycare.net...zoomer-a-game-changer-for-gluten-testing.html

One line perked my attention: "though the fact that 10% of the general population may have a genetic IgA deficiency may confound the results)." So, since my IgA was low, did that muck up the results?

Thinking now that I may ask this doctor to retest IgA, IgG, etc, and see where they are, compared to when they were originally done. Maybe there's an answer there?
 

Hip

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OK, at least the test is based on one study. But it seems the study this test was based on is geared to detecting celiac disease.

However, there is a difference between the immune response to gluten in celiac disease, and the immune response to gluten in non-celiac gluten sensitivity (= gluten food intolerance).

Dr Alessio Fasano did some good research on the difference (see this post). Basically in gluten intolerance, gluten triggers the innate immune system. But in celiac, gluten triggers both the innate and adaptive immune response, which creates a more severe disease.

So even if the Wheat Zoomer can detect celiac, it's not clear to me whether it can detect gluten food intolerance.


In any case, I am not sure why you had a positive result on this test, but appear not to have any negative symptoms when eating wheat.

In my own case, I had lifelong gluten intolerance, but after developing ME/CFS that disappeared, and I can now eat wheat without any repercussions.
 

Belbyr

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I have done several different food allergy/sensitivity tests over the years and guess what.... They all spit out different results. :mad:

I have had one show all normal except for gluten. One showed yeast only. One showed dairy and other random stuff like beef, cranberry, and something else...

None of the diets have done anything for me either.
 
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@lllamamom I think your low IgA could mess up the results of the Zoomer test, but more in a false negative sort of way. It is interesting that they only test IgA, and not IgG. I think it's better to get a read on both as IgG will tell you more about long-term reaction.

It's strange that you don't have any negative reaction to wheat despite the test. I would just try to eat as nutrient-dense of a diet as you can, which cuts wheat out anyways. :)

You said that the ClearVite diet gave you "more gas and bloating and pain" - do you have those issues even now to a lesser extent? Do you have any autoimmune conditions?
 

Critterina

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I understand that, in the absence of other complicating conditions (MCAS, for example,) food sensitivities will frequently resolve after at least 90 days of non-exposure to the food. I'm hopeful that is what happened to you!
 

Wishful

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I hadn't heard that 90-day claim before. I'm pretty sure I'd avoided quite a few foods for more than 90 days, but the first or second exposure after that triggered my type IV sensitivity. Maybe it just applies to type I allergies?
 

Critterina

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I'm sorry if I wasn't clear, @Wishful , the 90 day window applies to food sensitivities, not allergies. I think it would be very dangerous to test antigens to which you've had a type 1 response after 90 days.

There are no guarantees that the 90-day abstinence will work, but if it doesn't there may be other factors of ill health contributing to it.
 
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@lllamamom I think your low IgA could mess up the results of the Zoomer test, but more in a false negative sort of way. It is interesting that they only test IgA, and not IgG. I think it's better to get a read on both as IgG will tell you more about long-term reaction.

It's strange that you don't have any negative reaction to wheat despite the test. I would just try to eat as nutrient-dense of a diet as you can, which cuts wheat out anyways. :)

You said that the ClearVite diet gave you "more gas and bloating and pain" - do you have those issues even now to a lesser extent? Do you have any autoimmune conditions?
Lieselotte, since going off the ClearVite disaster, no bloating, no gas, and the increased pain level I had with it has gone back to near it’s previous levels. I’ve fired the doctor, as he continued to insist that I must not be paying attention to changes, that I wasn’t exercising enough, and I really needed his exorbitantly priced vitamins.