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    Joined: May 2010
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    That is very scary. I am glad he is okay.

    Our allergist told us to not even bother with shellfish. It is so allergic that no one with food allergies should even try it. Another allergist told my sil the same thing about my nephew.

    There was an article out a few years back about gifted children being more likely to have food allergies. It can be really scary. Last night at family Christmas there were 3 known anaphylactic foods out. Placed on the table by the grandparents of the two children with severe allergies. Seriously? Grandma and Grandpa know what these children are allergic to and couldn't not serve peanuts, shrimp, and sesame seeds for one stinkin' night? Makes me crazy!

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    I'm curious if any of you have looked into oral desensitization therapy. I am completing a three-year course of sublingual immunotherapy for environmental allergies. The research looks pretty strong. I also have a friend who completed this for her child with severe peanut allergies with success. She felt overwhelmed by the anxiety of the need to avoid the food.

    http://www.medpagetoday.com/MeetingCoverage/ACAAI/29542

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    There is significant disagreement among top clinicians and researchers regarding the safety of oral desensitization.

    In fact, rumor has it that a death earlier this month in Boston was a case in which a "desensitized" child suffered catastrophic anaphylaxis upon ingestion of a serving of the allergen.

    ETA: oral desensitization studies have included fatalities, and while there was a LOT of buzz about this 5 to 7 years ago, the problem is that so many severely allergic children don't "hold" a particular threshold dose very well. What this means is that a maintenance dose can-- without warning-- cause refractory anaphylaxis that no medical intervention can mitigate. Pretty significant risk.

    Some people seem to do well with OIT, and some don't-- and there is unfortunately no way to know who is in which group (at the moment).

    Hugh Sampson has openly stated rather emphatically that OIT for food allergens is not ready for wide clinical use. He is certainly one of the foremost research physicians in the field, world-wide. Our own allergist trained with him, and concurs wholeheartedly-- we've discussed it with him. He feels that our DD is a very poor risk for OIT given her history and how she responded to SCIT for aeroallergens (very high risk-- probably would have discontinued if we hadn't had an expert in desensitization working with us).

    I've been hearing the "five more years" line since my DD first anaphylaxed at 11mo of age, by the way. I've quit believing it, myself.

    Last edited by HowlerKarma; 12/23/13 09:51 AM. Reason: stupid homonyms

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    Part of the problem with food allergen desensitization is that there are elements of the allergic response which are not entirely clear. This seems to be unique for food anaphylaxis. The other problem is that some subset of individuals has a wide variance in threshold dose for some food allergens.

    That said, I do know that there are several people over at FAS that have talked about their experiences with immunotherapy pretty extensively. Results really vary. Sub-lingual immunotherapy is probably the safest of the current options... but efficacy long term is an open question.

    smile


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    HK, is it correct to say your DD is a highly unusual case, though? I wouldn't think it would be a good idea for someone like her, but for more garden-variety food allergies, perhaps. My friend who did it with her child is married to a hot-shot physician, so I know they did their homework. The child is going on 2+ years with no issues, though it's fair to note that she also outgrew some of her other food allergies.

    I find food allergies mysterious and odd. I tested allergic (using skin testing, some reactions were 3+) to a number of foods that I eat regularly. On the other hand I absolutely cannot eat red meat at all without serious GI distress. This doesn't really matter since I am a vegetarian. I think it is possible that I was sensitized by the bite of a Lone Star tick--they are finding this can cause allergy to mammalian meat.

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    Originally Posted by ultramarina
    On the other hand I absolutely cannot eat red meat at all without serious GI distress.

    Do you have an allergy to meat or an intolerance to it? My understanding is that an allergy involves an immune response, whereas an intolerance typically involves what could be described as a food poisoning-like response.

    ETA about the 3+ reactions to foods you eat: that is really interesting. What did your doctor say? Is that common?

    Last edited by Val; 12/23/13 12:30 PM.
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    alpha-Gal sensitization via ticks as mediators is an allergy, albeit a weird one even among food allergies. One problem in differentiation of intolerance from "true" food allergy is the fact that the GI symptoms typical of intolerance can quite often be observed as a part of the systemic symptoms observed in an IgE-mediated response, too. Just because you have GI symptoms doesn't have to mean it's an intolerance. smile


    Yes, it's fair to say that my DD is likely to be a pretty extreme case in terms of her low threshold and very severe reaction history... but--

    honestly, what I understand from talking to allergy/immunology specialists in the field is that it's not clear that desensitization can produce actual "tolerance" that is effectively normal.

    If it can't, then that raises concerns re: what happens when other immune challenges are in play-- hormonal shifts or other illness, exposure to environmental allergens, etc. can all impact threshold dosing. That's not just for people at the low end like my DD.

    EVERY one of the studies conducted on OIT-- peanut, milk, egg, etc... and every method studies (SLIT, OIT, rush/slow/low-level/high-level) have had participants who had to quit the study because of anaphylaxis, and several have had VERY serious problems with this outcome, including near-fatal and even in one instance a fatal outcome. Such studies won't enroll participants like my DD to start with, so they are more "typical" patients.

    This is why, in spite of a handful of clinicians willing to DO oral desensitization... many of the leading researchers (the same ones who were so excited by it 5-8 years back when they were having good results in the short term with their studies) have now backed away from those earlier promising results, and have urged caution in offering desensitizations in regular clinical practice for now, until more is understood about the failure mechanism (which came as a huge surprise) and how to identify patients as "good" or "poor" risks for it.

    http://www.aaaai.org/global/latest-...ch/sublingual-or-oral-immunotherapy.aspx

    http://www.asthmaallergieschildren....r-food-allergy-not-ready-for-prime-time/

    http://www.hopkinschildrens.org/first-long-term-study-of-food-allergy-treatment.aspx


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    Originally Posted by HowlerKarma
    alpha-Gal sensitization via ticks as mediators is an allergy, albeit a weird one even among food allergies. One problem in differentiation of intolerance from "true" food allergy is the fact that the GI symptoms typical of intolerance can quite often be observed as a part of the systemic symptoms observed in an IgE-mediated response, too. Just because you have GI symptoms doesn't have to mean it's an intolerance. smile

    Ahh. Thanks for the clarification.

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    I don't know what the deal is with me and meat. I did actually test allergic to beef, but at the time I tested I could eat it. Now I can't eat it, or pork either. (I can eat chicken and fish just fine, so it's not some psychological vegetarian thing or inability to digest all meat). I get a lot of tick bites due to being outdoorsy and my husband's occupation (he works outside, and despite repellent use and showering immediately on coming home, he brings in ticks). I have also had Lyme once.

    My allergist said that testing positive indicates sensitization and that I needed to observe actual response to the foods in question. They offered a food challenge, but I didn't feel I needed it. I didn't get any 4 reactions, just 1-3. Of these, I now notice a mild reaction to one food and now do not eat it, but am not obsessive about it. If I were to avoid the foods I tested allergic to I feel like would not be able to eat anything, really (I tested positive to dairy, soy, several tree nuts, and corn, among other weird ones like broccoli and black pepper, and then there's the vegetarian thing) and I also tested positive to something like 60 environmental allergens. I had a really impressive array of welts that day! The allergist said that of their 400 patients I am among the top 5 most allergic. Yet other than recent development of allergy-linked migraines and problems with sneezing and runny eyes in childhood, I have few allergic symptoms. I do have oral allergy syndrome and have always had it. I am not a huge fan of raw fruits and veggies for that reason.




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    Originally Posted by Val
    Originally Posted by ultramarina
    On the other hand I absolutely cannot eat red meat at all without serious GI distress.

    Do you have an allergy to meat or an intolerance to it? My understanding is that an allergy involves an immune response, whereas an intolerance typically involves what could be described as a food poisoning-like response.

    ETA about the 3+ reactions to foods you eat: that is really interesting. What did your doctor say? Is that common?

    It's VERY common.

    As many as 50% of positive skin-prick tests to foods are not clinically relevant and have no real meaning in terms of being allergic to the food. NEGATIVE results in skin prick testing (properly validated with both +- controls) are about 95% accurate for foods.

    RAST testing for allergen-specific IgE is also problematic, though there are some well-established positive-predictive values that define a good solid 95% confidence level. Above that, it's very likely to be a real allergy. But there are also individuals who have quite low levels of circulating IgE and still mount impressive anaphylactic reactions to those allergens.

    It is quite individual, and even then can be pretty idiosyncratic.


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