If your allergies
are IgE-mediated, Xolair would improve them. The speculation about desensitization protocols and xolair is happening for two reasons, so far as I can tell:
a. Xolair improves, but does not entirely mitigate, the threshold dose and reaction severity commonly associated with peanut allergy in particular.
b. Peanut desensitization has the highest demand from patients, and those patients are otherwise unlikely to outgrow and will face life-long risk of death from anaphylaxis... but it also seems to have some of the highest risk in desensitization protocols.
Xolair seems to allow for
safer desensitization with peanut. It's not clear yet that it results in BETTER desensitization by any means.
We've had several members who have experience with Xolair and food allergies.
Allergists talk about "cyclic food allergies" that develop from eating too much of a food.Not the
reputable sort, they don't. OY.
There really is NOT evidence to support this kind of model of "allergy." I'm sympathetic-- believe me, we chased this particular wild goose when my MFA daughter was a toddler and preschooler. Those were some dark, dark days. I was desperate for answers and there weren't any, so I was willing to set aside my natural skepticism (and I have a PhD in a related discipline in the physical sciences, so I'm in a far better position here than most
physicians, never mind patients). I mention that only to note that I do understand why someone can become willing to attempt to find connections independently using whatever means available.
But this is an area where the science gets very very fuzzy in a hurry because (bluntly) there are SO many quacks operating that it all turns into hash and mostly, none of the legitimate researchers and physicians want to TOUCH the stuff with a ten foot pole. TT has a unique angle on this in light of Asian research circles where homeopathy and other grossly predatory quackery hasn't tainted the entire research field in TCM and similar promising avenues of research. Personally, the quacks in this field make me SO angry-- because they really do taint the field so thoroughly that authentically good researchers in North America won't go near it because it is the kiss of death professionally to have Marcola endorse (or spotlight) anything that you've written. {SIGH}
Unfortunately, that leaves patients who have weird, unexplained...
stuff... happening to them-- in a sort of limbo, where they can't communicate frankly with their physicians if they are good ones, or in seeing alternative practitioners who are really more about quackery than evidence-based practice. Or seeing practitioners that aren't really as good as their credentials might otherwise imply. Believe me, they're out there. Having written a few books or news articles isn't the same as being competent. (See my link below) Or-- turning over stones themselves in an effort to self-diagnose with the aid of the copious amounts of information on the internet.
The latter is a dangerous occupation for laypersons, however-- the reason is that you wade into a quagmire of science mixed liberally with
pseudoscience or worse. It all
sounds relatively plausible, after all-- unless you happen to have a good handle on the mechanistic side of HOW allergies and intolerance actually work from a biochemical stance, that is. Please understand that a lot of PHYSICIANS lack this ability to discriminate research critically. They really do.
I worry about this a lot.
This field is QUITE complex enough to take in even many otherwise good (but not "expert") physicians with some of the misinformation which is out there now.
Anyone that promises cutting edge treatment in food allergy (which desensitization most assuredly IS) had better either be publishing peer reviewed papers themselves, or be able to tell you who they communicate with who DOES. I mean that. Not ONE reputable American allergist would attempt desensitization for foods otherwise. It's dangerous.
Why not just leave you alone and let you post what you like here? Well, because while your strategy might be fine for someone who does not have IgE-mediated food allergy, an eosinophilic disorder, or some combination of the two... for anyone who does, avoidance is
avoidance. Lives are on the line, and anyone that ignores that imperative does take their life into their own hands.
This is NOT a do-it-yourself project.Please be cautious drawing connections from peer-reviewed information added to NON-peer reviewed, highly speculative sources.
http://www.quackwatch.com/01QuackeryRelatedTopics/candida.htmlhttp://www.sciencebasedmedicine.org/naturopathic-medicine-week-2013/http://www.quackwatch.org/01QuackeryRelatedTopics/gastro.htmlhttp://www.aaaai.org/ask-the-expert/role-of-elimination-diet-in-the-management.aspxThis is a BEAUTIFUL example of what I'm talking about--
total hash of science and pseudoscience here:
http://tastyandglutenfree.blogspot.com/2012/02/its-all-in-family-why-rotation-diet.htmlThe physician here, reputable or not, internationally renowned or not, is CLEARLY not following best practices in terms of testing and diagnosis. Skin testing alone isn't enough to "clear" anyone of anything, if a clinical allergy HAS existed in the past.... which in all honesty, it probably did not.
An example of a GOOD speculative source:
For those interested in seeing how food allergy researchers examine/interpret current research articles, I highly recommend reading a bit here:
http://jaci-online.blogspot.com/You can see that it's not always as simple as it seems-- but that's peer review for you. Check out particularly those posts that have four or more comments-- or those which include invited responses from authors.
Yes, food intolerance is real. It's also
way over-diagnosed by alternative practitioners and even MORE over-diagnosed by laypersons diagnosing themselves. The problem with that is that
real health conditions that are responsible for the symptoms that may be wrongly attributed to food. This is where I'm worried about people who come here and post a lot of stuff that isn't necessarily related (or all of it valid in a scientific sense), but draw connections between those things. I understand the need to seek answers, and BOY, do I understand wanting solutions...
Stop and consider for a moment that particular symptoms might be caused by... contact with water. Doing a load of laundry. Or getting out of bed. Or sitting. WOW-- all of my symptoms happen within a few hours after I do those things. Possible, right? In fact, almost seems PLAUSIBLE when you stop and think about it that way for a minute-- because of the
frequency of those things. Well, food is an easy target, too, because we all eat, and we do it
a lot. But this is correlation crossed with selection bias. This is why self-diagnosis is so rampant and so problematic.
Obviously-- working with a practitioner is a MUST. If your situation is complex or strange in some way-- KEEP looking until you find a physician that can give you
answers, or at least explain why nobody can do so. Personally, I feel quite strongly that those with eosinophilic disorders are probably not at all well-served by anyone outside of specialist centers that do a lot of research on the subject. It's a very complex condition. I'm concerned that you're working with a practitioner who gave you a blood test, but then didn't seem to
adequately follow up with you. You're still experiencing significant symptoms-- and you have a practitioner who apparently didn't even see fit to conduct a SPT to confirm blood testing results, conduct biopsies, etc-- or refer you to one of the specialist in the field? This is worrisome.
Fact:
IgE mediation is (currently) one of the few mechanisms of food sensitivity that seems, when studied, to be "real" and reproducibly tied to specific foods or their proteins.
IgE-mediated food allergy is almost always (though not universally) associated with IMMEDIATE reactivity to foods upon consumption, no matter how long the interval between doses, no matter what sort of premedication patients try. Reach a threshold dose and you're GOING to have symptoms within seconds to about 4hrs (99%) and probably within an hour (90%).
IgE-mediated intolerance to foods carries with it
risk of anaphylaxis. Period.
SPT has a 95%
negative predictive value, but a variable positive predictive one, depending upon allergen, patient history, and immunological status for validity.
RAST for specific IgE
seems anecdotally to have a slightly lower negative predictive value.
Combining RAST, SPT, and patient history (food diary) with in-office food challenges leads to the best diagnostic picture, and is considered current "best practice" in diagnosing food allergy.
Luark, I promise that I'm not picking on you, I'm not suggesting that your problems are not real, and I'm not trying to attack you-- only to point out that the things you are posting here (experimentally trying your own method of desensitization, for a diagnosis which isn't even clear) are potentially DEADLY to most of the people who find themselves reading here. Desensitization is NOT something that patients or parents should be "experimenting" with by themselves. I just want it to be clear that this is NOT NOT NOT a good idea for anyone that has probable or confirmed IgE-mediated or systemic history with any food allergen.