Wednesday, November 27, 2013

Beans, Beans and More (or Less) Allergenic Beans!

We have a little good news this week: my son passed a home bean challenge for both pinto and cannellini (white) beans last night. Hooray!

At our last allergist visit, they ran the numbers on a number of varieties of beans and many were Class 0, with values like 0.68. My son's doctor thought it was reasonable to try these at home.

Going to stop for a moment and interject: DON'T DO THIS WITHOUT YOUR DOCTOR'S DIRECTION. A lot of things go into whether home challenges are a good idea for your child: how serious the allergen typically is, how far the hospital, how experienced the parents are with recognizing reactions. Many doctors are not comfortable with this at all. But, in our case, it makes sense to do some challenges at home because my son tests slightly allergic to dozens of foods.

He has avoided all beans since around age five, when he started developing new allergies. First it was tuna. Then cashews. Then (to our great surprise), he suddenly became allergic to garbonzo beans, something he had eaten very regularly through toddlerhood. Then it was sugar snap peas. Green beans. Baked beans (a particularly scary reaction that happened at his aunt's house, out of town, without medication in hand). The doctor actually thought it was possible he had something called "idiopathic anaphylaxis" at the time - reactions from unknown causes. However, after we kept a careful journal and did some testing and even in-office challenges, it became apparent he had developed a bean allergy.

At that point, we just started avoiding all beans and peas, which our doctor thought was reasonable. It turns out that 1 in 20 kids can have an allergy to a seed protein that's shared between bean species. If my son had that type of allergy, it was possible even more bean sensitivities would surface.

Fast forward to the start of high school. My son is a very healthy, adventurous eater and he wanted beans back in his diet, so we asked about home challenges at that time. The doctor said "sure."

We followed the same protocol as in the office: start with 1/4 of a bean and double the amount every 20 minutes until he reaches several Tbsps. of the food. The hardest part is that he has to discontinue his antihistamine for 7 days before.

We introduced kidney beans and my son had no problem during the challenge. However, the next day, he threw up after eating chili with kidney beans. A couple days following - exact same result. We all sighed and put it back on the list of foods to avoid.

This time, thankfully, things were different. Both pinto beans and cannillini beans went off without a hitch.

Did my son really outgrow beans this time? Might the FAHF-2 have helped? Or were we just avoiding two varieties that he could have tolerated all along? We don't know.

It's also early days with beans. We could have the same experience as several years back, where he succeeded in the challenge but really can't tolerate beans in his diet.

My husband had a gleam in his eye last night. He said to me for the first time "do you ever wonder if he's just not allergic to anything any more except peanut?" Yes, I wonder. It's time to do an open milk challenge and find out.

Even if he fails, even if the FAHF-2 had nothing to do with any of these successes, I'm still incredibly grateful. The clinical trial didn't just change his body; it changed how we all think about this stuff. We're just not as afraid. (I actually went to bed and SLEPT while his second set of bean challenges were going on!) We understand now that our fear was as big a burden as the allergens. And, we're pushing harder to work through this stuff, even when it's incredibly hard to find the time and emotional reserves to do it.

Yes, I'm grateful. Happy Thanksgiving to all of you celebrating this week!

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  1. Adding new foods is great news! Is your son perhaps allergic to mustard? Thinking of baked beans and chili made that thought pop into my head. My daughter's allergic to mustard and it took us a while to figure it out.

  2. Nah, it's definitely beans. It took us a lot of time to figure it out, but once we did work it out, we didn't have any further mystery reactions. But thanks for the thought!

  3. Awesome news! You mentioned that your son started developing new allergies at the age of 5. Did it happened out of the blue? Did it continue? When did he stop developing new allergies? I have severe anxiety worrying about this. Thank you in advance for taking time to respond.

  4. Also, i noticed that you do not currently list tuna and cashew in your current list of allergens. Does that mean he outgrew them? I am really confused as our doctor told us that its extremely rare to develop new allergies after toddlerhood...but all of a sudden my little one had reacted to a few previously safe foods, so now i am freaking out.

  5. Hi Anonymous:

    Yes, our son did suddenly start developing new allergies right around kindergarten. We can't explain it - there was nothing we could identify at the time that had changed in his diet or his health. It WAS very weird and it took us almost a year to figure it all out, because all of a sudden foods he had eaten without incident were causing problems.

    He did seem to have transitory allergies to both tuna and cashew. We went through challenge tests for both of these in the doctor's office several years later, and he's now eating both foods without incident again.

    One thing we found out as part of being in the first clinical trial we did (the one where they just measured families with food allergies) was that my son has VERY high total IgE, the marker of atopy. Doctors don't typically measure this because it doesn't have much meaning in diagnosing individual allergies, but in our son's case, it seemed like he was becoming allergic to all kinds of things because his body just responded that way. That may also be why the FAHF-2 worked for him when it didn't work for other kids - because it suppressed the allergic response across the board.

    Our doctor was surprised at the time and, as I mentioned, we actually went through the exercise of food challenges to prove the allergies were not just our imagination. I don't think it's common to develop allergies after toddlerhood, but I have heard the same experience from a few other parents.

    My best advice is keep a very careful food diary and document what you see. Good luck! It was one of the most stressful times in our parenting because, for a while, we were afraid to feed him anything. Once we worked out the new allergies, things were back to normal.

    Hazelnut is the only allergy that's popped up in his teen years, but we're hopeful it's a pollen cross reaction. That's on our list to challenge test in the allergist's office.

  6. Hello,

    Been tracking your blog for the last few months that we found out our son was allergic to certain foods. We're waiting for the FAHF-2 results which seem so promising.

    In the meantime, we have done some home remedies with food and supplements and have been able to reduce total IgEs from 112 to 77 (about 30%) over the last 6 weeks (some of the specifics are down as well--not all, though). Obviously, we are very excited so far.

    At the risk of bursting my bubble, would you say that this is likely a helpful thing? I know IgE is not nearly the whole story (and we are avoiding skin and oral testing for now).

    Thank you!

  7. Well, I'm not a doctor...but our experience with IgE has been that it can vary greatly, depending on the time of year. It would make sense that total IgE would be dropping as we move into winter, as pollen allergies are less in play.

    I have no faith at all that IgE numbers have any real meaning, other than as a general pattern. My son has failed food challenges for foods where he's a Class 0 on RAST tests. Plus, as soon as the child has the food, the numbers often go right back up, so it's a little like measuring an echo.

    I worry a little when I hear about "natural cures" for food allergies, because it might cause people (especially children) to take more risks if they think they've reduced their food allergy. It's a hard lesson to find out they're wrong. :(

  8. Very good points, thank you. We'll be especially watchful for seasonal changes in the total IgE level--we had not yet thought of that.

    I agree that people should not prematurely conclude that their allergies are decreased without extensive and long-term testing (especially oral challenges).

    If the results from what we have been doing prove helpful long-term (and extend beyond IgE), we'll share more about what we are doing. For better or worse, the back-bone of what we are doing is FAHF-2 (with assistance from some TCMs, not Dr. Li). I imagine Dr. Li would say that it's not "real" FAHF-2, but until "real" FAFH-2 is available, we don't have much of a choice other than sit around with epi-pens.

  9. Anonymous, I don't remember if we had access to total IgE numbers during the trial, but I do know my son's peanut numbers went UP after the medication. What they hoped for was that the numbers would go up and then go down...almost as if the allergy had to be activated before it could be suppressed.

    I don't think there's anything wrong with do-it-yourself FAHF-2, other than that the effectiveness of the herbs themselves can vary greatly. (I believe Mt. Sinai worked with a company in China to ensure they were getting the real deal.) The stuff has been used for 3000 years, after all!

    We're still waiting to see if our son will have access to the medication again, although I'm not even sure he needs it.

  10. Fingers crossed for everyone. :) Thank you so much for the incredible site--it has been a literal life-saver.

  11. I miss your posts! When is the next one?

  12. Aw...just lots going on in our lives right now! I promise...I will get back to the blog this month.

    We have another food challenge on Friday, so that's always good post fodder.

  13. Keeping fingers crossed for your food challenge and looking forward to the new posts!

  14. This comment has been removed by a blog administrator.

  15. Shylock, I'm going to repost your comment below. But the link from your user name is disgusting. You need to figure out how that happened and get rid of it, as I cannot keep comments on my site with that link.


    Hey FAB,

    It's great to hear that your son is doing so well and I really think that it is due to the FAHF-2 treatment. I am the anonymous poster from earlier in the thread who's giving his son unofficial FAHF-2 as tea (and other natural and diet remedies). We also did a (blood) test this week and eosinophils were down by about 25% and specific and total IgEs were down by about 45% from when we started 3 months ago.

    At this point, I have to conclude that FAFH-2 is the real deal (at least to block anaphylaxis) and that IgEs can come down with dietary changes (for what IgEs are worth).

    I'm going to start a site soon so that other people can get the same results as us without having to join trials or go to NYC and spend $1,000. Would it be OK with you if I posted a link on your blog later.

    Finally, from scouring the web for anecdotes about people's results with FAHF-2, it seems that everyone is getting good results. Do you know of a place where FAFH-2 recipients can audit their experiences (since the Phase 2 results are taking forever to be released)?

    Thanks so much,

    1. Hey FAB,

      Again, my error. I chose to use the screen name without checking what the URL would link to (or even that our names would link to the URL). That's how it happened and my comment after the first was an attempt to have it rectified ASAP before anyone else would have to experience what we did (I was in shock--and at work--when I clicked on the link). Thanks for taking care of it.

  16. Shylock, that's so great that you guys are having a positive experience! I only know a couple other people trying this medication (or the traditional herbal form) and I do agree that the results seem mostly positive. However, I really want to see the trial results, as anecdotal evidence is almost always skewed toward those who have success. The moms of kids who don't respond generally don't start blogs.

    I'm always happy to look at links (and sometimes promote them), but I generally don't support commercial links on my blog. I think one of the big concerns about doing FAHF-2 as a DIY project is the purity of the herbs you can purchase retail. There was also significant toxicity associated with the traditional formula. I always find it a hard line to walk. I don't want to give people medical advice...just to provide information and let them decide for themselves. Just food for thought if you are thinking about putting together a retail site.

    1. Hi FAB,

      I may not have time to do a retail site (since my spouse and I both work, have kids, one with FA, of course). But I do think people have the right to get access to FAHF-2 (and other diet supplements and changes) since it is taking so long just for the phase-2 study to be released. I am doubtful that FAHF-2 from Dr. Li is going to come out to the general public within the next 2 years.

      I agree that folks should NOT just use any random Chinese herbs, because they can contain heavy metals like sulfur, pesticides, or be processed in allergen facilities. I also agree that the original formula (Wu Mei Wan/San or FAFH-1) should also not be used b/c it contains harmful mushrooms.

      Where we live we are lucky that we have companies that guarantee quality herbs through 3rd party testing (either organic or at least free of harmful elements).

      There are also a whole battery of other dietary changes that seem like they should be made based on scientific papers (and results we have been getting). Either way, if I ever make such a site, I will email it to you. You can link to if if you want to.

      Most importantly, what I do want to do (and what I hope you would link to) would be to create a discussion forum that people who have had FAHF-2 can post to. For all of its faults, I have to say that I think FA families would really appreciate it. For us, it was very stressful to do it on our own with only small amounts of evidence that it would lead to good things (mainly your blog!). Anyway, sorry again about the mistaken URL. Thanking God for the good results that appear to be around the corner for all of the FA children.



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