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Food Allergy Test Results - Worse

  1. LBee

    pomegranate / 3895 posts

    @iluvboba637: I’ll wall you!

  2. Adira

    wonderful pomelo / 30692 posts

    @iluvboba637: I don't believe there's a thread for Food Allergy Mamas. At least not any that's active!

  3. Mrs. High Heels

    blogger / eggplant / 11551 posts

    @LBee: Our first OIT appointment isn't until mid-June, so I don't really have any tips yet, but I'll report back!

  4. Mrs. High Heels

    blogger / eggplant / 11551 posts

    Has anyone here heard of this skin patch to treat peanut allergies? https://www.nih.gov/news-events/news-releases/skin-patch-treat-peanut-allergy-shows-benefit-children

    They are also working on a peanut allergy vaccine - http://www.newsweek.com/mice-peanut-allergy-cured-vaccine-885197

    Seems like there are promising developments going on in the food allergy world!

  5. iluvboba637

    kiwi / 549 posts

    @Mrs. High Heels: any update in your dd’s OIT?

    We are now in the 400s on the waitlist (originally in the thousands) so I’m guessing a couple more months.

  6. LBee

    pomegranate / 3895 posts

    @iluvboba637: You didn't ask me - but we are discharged to maintenance! We now move up on her "dosing" every 3 months in larger increments as opposed to weekly. It's been the best thing we've ever done. Feel free to wall me with any questions!

  7. iluvboba637

    kiwi / 549 posts

    @LBee: thanks for your response. Sorry I didn’t ask you because I just specifically remember Mrs high heels because of her blog posts but I know a few of you gals responded to this thread that your kiddos were doing OIT too. I can’t wait until we get in. I was heartbroken to learn yesterday that she is also allergic to many tree nuts too. I’m so glad you and your family had a life changing experience with OIT.

  8. LBee

    pomegranate / 3895 posts

    @iluvboba637: You can do OIT for peanuts and tree nuts concurrently! LO doses for tree nuts along with peanuts even though she's not allergic. You've got this!

  9. periwinklebee

    grapefruit / 4462 posts

    @iluvboba637: I share your frustration at what a crazy long wait there seems to be for anything food allergy related. We waited months for an appointment, when we finally got in LO tested positive for egg, peanut, and tree nut allergies with the skin test but the control was contaminated and we aren't sure if other tests were contaminated, so we had to do a blood test. The results of that have now been back for nearly a week, but their policy is that the doctor will call you to explain test results within ten days, and don't complain until it has been longer than that. Ten days! And based on this experience, I don't even want to think about the waiting list for OIT... Anyways, I hope that you're in soon and have a good response

  10. periwinklebee

    grapefruit / 4462 posts

    Not sure if many people are still active on this thread, but question... We finally got our results back and doctor said that because a couple of the tree nuts were "quite high" (above 2.75), LO's not eligible for exposure. May be eligible for OIT on peanuts and some other tree nuts and eggs, which were positive but below 2.75, but she has to consult with a doctor who has "more experience" first. She seems to be fresh out of medical school, and wasn't great at answering questions, just saying she has to consult with a more senior doctor.

    From what I've googled these numbers can be super noisy and aren't that predictive of the severity of the reaction; also 2.75 doesn't seem that high compared to various numbers cited in this thread, so I'm a bit puzzled by the cutoff and whether this is standard. Anyone have experience with cutoffs for OIT? Or do I not need to worry too much given proteins in different types of tree nuts are correlated, so doing the ones with lower numbers may help those with higher numbers? I will ask the doctor too when she calls back, but she said it would be a week, and anyways I want to educate myself more in the meantime...

  11. LBee

    pomegranate / 3895 posts

    @periwinklebee: That's interesting, in my experience there isn't a cut-off for OIT. If you join the OIT 101 group on Facebook (or Private Practice OIT) you'll see there are people with numbers in the hundreds (which is considered a level 6) actively doing OIT. My daughter's number was higher that that and she wasn't considered quite high (she's a Level 2 allergy) and is actively in (albeit in maintenance) OIT.

  12. periwinklebee

    grapefruit / 4462 posts

    @LBee: Thank you - this is super helpful!

  13. LBee

    pomegranate / 3895 posts

    @periwinklebee: I would check out OIT 101 and search for your doctor's name to see experiences. We got lucky that our doctor was SUPER knowledgeable, but had I not been specifically recommended to him by several friends who had gone through OIT, I would have gone in guns blazing with info.

  14. Adira

    wonderful pomelo / 30692 posts

    @periwinklebee: I don't know enough about how OIT works or if there is a cut-off, but with regards to the numbers, our Allergist cares more about how the numbers are trending, vs what they are. My oldest' numbers went down by a huge margin each year, so our Allergist felt comfortable starting food challenges. On the other hand, my youngest' numbers have gone up drastically, so she's not even going to test his numbers for another year and he's not eligible for a food challenge now.

  15. Andrea

    GOLD / wonderful coffee bean / 18478 posts

    @periwinklebee: We've been through OIT and there is no cut off. Doctors may have a minimum age requirement (so that the kids can be vocal about symptoms) and certain pre-existing health conditions can hamper the OIT process (asthma). But no one is "too allergic" to go through OIT.

  16. periwinklebee

    grapefruit / 4462 posts

    @Adira: @Andrea: Thank you - this is really helpful!

  17. Mrs. High Heels

    blogger / eggplant / 11551 posts

    @iluvboba637: hi sorry I’ve been so MIA, but we went in for a lot of testing back in June, then went in again at the end of July to discuss the results and treatment plan/dosing instructions... and are now on our second food. We started with pine nuts for 6 weeks, then recently added chickpeas. These are foods she has a slight sensitivity to, but not a severe allergen like peanuts... next on the list is Brazil nuts, so we will probably get more nervous as she gets deeper into the nuts. So far so good though!

    When we got our bloodwork results back it was 10 pages of comprehensive data! They estimated it will take us about 16 months to go through the entire program, so fall of 2019 is when I can give a true update of how everything went.

    They’re going through the waitlist at an incredible speed and are getting increasingly more efficient. I know people who signed up in March of this year that have been contacted that they’re now off the waitlist, so hopefully it won’t be much longer for you. I found Dr. Randhawa super personable and knowledgeable. He really took his time with us too. Great bedside manner!

    My post about our first visit is up on the blog today, and I am working on another post about our next visit which will be a lot more detailed in terms of treatment and how dosing at home is done. Hopefully this will give you additional insight on the process and answer some of your questions, but feel free to wall me if you just want to chat more about it too!

  18. Mrs. High Heels

    blogger / eggplant / 11551 posts

    @periwinklebee: 2.75 sounds really low to me too. As far as I know, I’ve never heard of a cut-off for OIT. I’d get a second opinion!

  19. periwinklebee

    grapefruit / 4462 posts

    @Mrs. High Heels: Thank you!

  20. periwinklebee

    grapefruit / 4462 posts

    @Adira: I remembered from this thread that your LO is allergic to sesame, and I was wondering if you could tell me more about your experience with that? I know that in the U.S. sesame isn't classified as an allergen that has to be listed on labels... My son unfortunately had a serious reaction when we introduced it, that necessitated the epipen and a 911 call. Does your LO have other allergies beyond peanuts, tree nuts, and sesame? My LO is allergic to peanuts and tree nuts as well, and this time when we go in to test for sesame I want to be very proactive about asking for tests for related allergens (so far I've read rye is related...), as sesame was never mentioned to us even though the skin test came up as very allergic for the tree nuts related to sesame...

    Thank you, I super appreciate it!

  21. bakingdoodle

    cherry / 174 posts

    @periwinklebee: starting this month, sesame will be listed as an allergen in the USA. I just came back from the allergist for my daughter (egg and peanut allergy)

  22. periwinklebee

    grapefruit / 4462 posts

    @bakingdoodle: Thank you!

    From what I can tell, the FDA is considering revising regulations on sesame labeling, but it is at the stage currently where it is open to public comment, without a decision reached yet - https://www.fda.gov/Food/NewsEvents/ConstituentUpdates/ucm624462.htm

    It makes me pretty nervous - I really hope OIT will be an option for us in the future.

  23. Adira

    wonderful pomelo / 30692 posts

    @periwinklebee: Ugh, I'm sorry you're dealing with sesame as an allergen too! My son is only allergic to peanuts, tree nuts, and sesame (that we know of), but our allergist doesn't do allergy testing for anything except suspected allergies due to the chance of false positives. They don't want us to avoid any food that we might not have to. The only exception to that was tree nuts when we discovered the peanut allergy, since they are so heavily linked to each other. Since discovering the sesame allergy, I have heard that the protein is similar to peanuts, but I don't know how connected they are to other things.

    Our sesame allergy is also pretty severe (right up there with our peanut allergy). We luckily didn't have to Epi, but we did end up at the ER when we discovered it because we couldn't keep his allergic reaction under control using Benadryl. (In hindsight, we probably should've used the Epi-Pen...)

    Good luck at your appointment! If you learn anything new, let me know!!!

  24. periwinklebee

    grapefruit / 4462 posts

    @Adira: Thank you - this is super helpful! I completely take the point on false positives. From what I've read, skin and blood testing both have high false positive rates (and also can have false negatives.) At the same time, I'm really nervous to introduce new foods now and would really like some kind of reassurance. The good thing is that the epipen worked - DS's lower lip and eyes were severely swelling, he was covered in hives, and he seemed to be entering distress, whereas by the time the fire dept arrived 5 minutes after the epipen, his oxygen was fine and the swelling had already started going down. But still...if there were other things that came up positive, I'd feel most comfortable if he tried them at the clinic, even though scheduling food challenges is a huge pain...

    This page had a really helpful summary of the literature on cross-reactivity with sesame allergies: https://www.aaaai.org/ask-the-expert/cross-reactivity-seed

    In short, the clinical literature on cross-reactivity is really thin. there is a 1993 study "Common allergenic structures in hazelnut, rye grain, sesame seeds, kiwi, and poppy seeds."

    "I might mention parenthetically that sesame seed has been shown to cross-react with other foods including kiwi, rye, hazelnut, black walnut, macadamia, cashew, pistachio, and peanuts."

    The original question is about poppy seed - apparently on that evidence is limited to three patients who did have cross-reactivity.

    Interestingly, hazelnut, cashew, and macadamia were LO's highest numbers on skin and blood testing. Based on this, I think I will ask for testing for rye and kiwi, and possibly other seeds. At least for rye and kiwi, I will avoid unless we get a negative skin and blood test. With the other seeds, we may just have to hold our breath, because there are enough of them that I'm sure we would have false positives come up with a complete panel, so they may be hesitant to run it.

    I will let you know if I learn anything else. I've asked the attending physician in our allergy clinic to call me back to discuss.

    Thank you again!

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