tag:blogger.com,1999:blog-272905162914577099.post982521639690320287..comments2023-06-24T07:01:51.675-07:00Comments on Food Allergy Bitch: Life After Food AllergiesFood Allergy Bitchhttp://www.blogger.com/profile/10243380102426383939noreply@blogger.comBlogger35125tag:blogger.com,1999:blog-272905162914577099.post-76667338280420094482015-03-31T08:39:28.433-07:002015-03-31T08:39:28.433-07:00Are you not posting anymore? Are you not posting anymore? Gratefulfoodiehttps://www.blogger.com/profile/03485736171544867945noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-48266051536362189482014-10-28T23:41:52.700-07:002014-10-28T23:41:52.700-07:00Great results. Any UPDATES?Great results. Any UPDATES?Shylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-89290075863658171812014-10-19T07:28:37.756-07:002014-10-19T07:28:37.756-07:00I try strict avoidance to prevent food allergy. Bu...I try strict avoidance to prevent food allergy. But since I've read your blog I have learned so much. Thank you.Anonymoushttps://www.blogger.com/profile/05827377708641041717noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-66255278435544113412014-07-16T12:08:41.240-07:002014-07-16T12:08:41.240-07:00Hi FAB, Eager to hear if there are any further upd...Hi FAB, Eager to hear if there are any further updates. Has it been a blissfully, quiet and stress free last 4 months? :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-59430453399377963172014-05-17T04:48:34.538-07:002014-05-17T04:48:34.538-07:00I totally agree with Tiffany on this. The diagnosi...I totally agree with Tiffany on this. The diagnosis is not always accurate and has many loopholes as such. Some times, you find yourself on the wrong side.Sharon Robertshttp://www.lifewithallergies.net/allergy-medicine-for-dogs-8-medications-worth-trying/noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-34423068078438656312014-05-07T08:55:00.333-07:002014-05-07T08:55:00.333-07:00There's still so much unpredictability when it...There's still so much unpredictability when it comes to food allergies but I am amazed at how much has been discovered in recent years (both diagnostic and coping/handling). It will be interesting to see how things change over the next decade but in the meantime if it means I have avoided more foods than needed or for longer than needed, I'd rather have been safe than sorry.Tiffanyhttp://www.allergycookie.com/noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-17159703121304250092014-03-18T10:24:26.533-07:002014-03-18T10:24:26.533-07:00Hi FAB, Ok, interesting. So, to sum up, up to 2 y...Hi FAB, Ok, interesting. So, to sum up, up to 2 years before taking FAFH, there had been minor reactions to some things and major reactions to other things.<br /><br />Since taking the FAFH for 6 months, all major (known) major reactions are now gone and only minor reactions remain.<br /><br />It seems that not all of these things have been fully tested, but those that have been are consistent with this. As of now, the results from the mouse study (that if you take FAFH then you should not get anaphylaxis to amounts from accidental exposure) have held true.<br /><br />Of course, this is just one data point (your DS). But every data point counts! Thanks so much for sharing!Shylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-8962072665530457592014-03-17T15:26:20.773-07:002014-03-17T15:26:20.773-07:00All the lentil reactions were when he was a toddle...All the lentil reactions were when he was a toddler. No lentil exposures we know of since then. <br /><br />Walnut is cross-reactive with (evil) birch protein and a few other proteins:<br /><br />http://www.food-info.net/uk/intol/walnut.htmFood Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-67742770773708528262014-03-16T22:38:15.734-07:002014-03-16T22:38:15.734-07:00That's very interesting. If you would not min...That's very interesting. If you would not mind, I would love to know the full details of the treatment (what herbs, diet changes, anything). We've done so much self-research with the scientific papers and put a lot of things into practice (also getting help from some TCMs). I'd love to share treatment details--if you wanted.Shylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-47645473382237876072014-03-16T17:28:36.587-07:002014-03-16T17:28:36.587-07:00Two of my kids see her privately. We We have on...Two of my kids see her privately. We We have only been on a protocol that involves herbs like fAHF-2, but so much more. We do not expect to see any reversal for at least a year and have not tested anything expect kidney and liver function. Carriehttps://www.blogger.com/profile/05321183009199818153noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-50827761180866297372014-03-16T16:43:30.758-07:002014-03-16T16:43:30.758-07:00Hi Carrie, very interesting information. If I und...Hi Carrie, very interesting information. If I understand correctly, your child has been a patient of Dr. Li's and is/was on FAHF-2 (perhaps among other things)? Would you mind going over the improvements in your child's health since starting the treatment (especially if evidence exists that anaphylaxis has been blocked during accidental exposure)?<br /><br />Thanks very much,<br />ShylockShylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-66475393259876746142014-03-16T14:59:54.874-07:002014-03-16T14:59:54.874-07:00Hi FAB. Our DS has a high RAST score to walnuts, ...Hi FAB. Our DS has a high RAST score to walnuts, which we also think is weird because he has always eaten them. We have a lot of theories about it (maybe the protein is too big to pass through the gut into the blood stream).<br /><br />When you say that your DS has had a serious reaction to lentils, was this before or after FAFH-2 (or both)?<br /><br />Since starting the "do-it-yourself" FAFH and diet changes, we're also seeing a lot of great results (less scratchy skin, asthma gone, and blood work phenomenal--but we're too scared to food challenge).<br /><br />Best,<br />ShylockShylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-16795000902553218482014-03-16T11:49:06.072-07:002014-03-16T11:49:06.072-07:00He has had serious reactions to lentils. He has ha...He has had serious reactions to lentils. He has had mild reaction to most beans, including green beans. That's why we finally just stopped giving him any beans or peas. He has never had a known reaction to hazelnuts - that high RAST came out of the blue. <br /><br />The doctor expects no reaction to lentils, but I am going to have them do that test in the office. Same with hazelnuts, as that can cause severe reactions (although he's never experienced one). <br /><br />With regard to what's "expected"...I don't think any of this is expected! However, he is not avoiding "may contain" peanut at this point.Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-77907348491740457362014-03-16T09:49:48.547-07:002014-03-16T09:49:48.547-07:00For what it's worth, Dr Li believes for the h...For what it's worth, Dr Li believes for the herbs to have their full effect, they need to be taken longer than six months. She estimates 2-3 years for most people. That does not mean you cannot see benefits prior to that or with "only" 6 months of treatment. Carriehttps://www.blogger.com/profile/05321183009199818153noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-32148914156182902692014-03-16T09:46:45.544-07:002014-03-16T09:46:45.544-07:00Hi FAB,
Thanks so much for the continue help. So...Hi FAB,<br /><br />Thanks so much for the continue help. So soy, green pea, and cheese are history! And these had all been both mild or strong reactions at least a few _years_ prior to the FAHF.<br /><br />For peanut, hazelnut, lentils, and the other beans, it sounds like it is generally assumed that your DS will still have _mild_ reactions to these things, meaning if he eats minimal quantities from accidental exposure, then anaphylaxis is not expected. Is this accurate? And it sounds like there has not been anaphyaxis to these things in some time anyway even before FAFH (so getting mild reactions to these things would not necessarily be much of a change).<br /><br />I apologize for going over it so many times--just want to fully absorb the result from anyone who has had FAFH can share. Thank you!<br /><br />Best,<br />ShylockShylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-77326603232909729052014-03-16T09:18:48.170-07:002014-03-16T09:18:48.170-07:00I wish I had a clear answer for you, but I really ...I wish I had a clear answer for you, but I really don't. The only serious reaction my son had in the last several years was in 2010 to soy. He also failed a food challenge to green pea. Everything else during his teen years were mystery situations with mild symptoms where we just watched him to make sure things didn't progress. When we started baked milk dosing, he did have mild symptoms (tingly mouth, stomach ache) to cheese, so we just stuck with straight baked milk at that point. <br /><br />He has not had ANY symptoms of any kind that I know of since the FAHF-2. He had no issues with the milk dosing after the trial, and he's now eating almost everything freely (other than peanut, hazelnut, lentils and the beans we haven't tried). <br /><br />However, his reactions during the trial were really relatively minor. They never let him get to wheezing or vomiting - it was just changes in breathing and in his throat that caused them to call it. It's hard to tell if the FAHF-2 mitigated anaphylaxis because they never allowed him to get to what I would call full-out anaphylaxis. I'm obviously grateful for that! <br /><br />So, to sum up:<br /><br />- He reacted to soy in 2010<br />- He reacted to green pea during the challenge - 2011? <br />- He had mild symptoms to baked cheese before the trial<br /><br />After we did the medication - nada. Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-2054071712875744302014-03-15T07:05:40.140-07:002014-03-15T07:05:40.140-07:00Hi FAB,
Hope all is well. One quick follow up qu...Hi FAB,<br /><br />Hope all is well. One quick follow up question. Is it accurate to say that prior to using FAFH-2 (including testing as far back as 2 years prior), your DS had relatively minor reactions to some things and anaphylactic reactions to some others things--and that after the 6 months of FAHF-2, the things that had led to minor reactions no longer have reactions at all and the things that led to anaphylactic reactions now lead to, at most, relatively minor reactions?<br /><br />(Pardon that long sentence.) I'm not trying to be facetious to "prove" that anything was due to FAFH-2, but I am very curious if, as far as we know, if it is expected that taking FAFH-2 is consistent with elimination of anaphylaxis (which was the golden result from the mice studies).<br /><br />For our part, the elimination of anaphylaxis would be more than enough for us.<br /><br />Best,<br />ShylockShylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-18329855799738186102014-03-14T20:58:35.441-07:002014-03-14T20:58:35.441-07:00Oh, and after your explanation I went and read the...Oh, and after your explanation I went and read the new book about FAHF-2 and now I kinda want to just drag my kid up to Dr. Li's clinic... but she's not even 4. It's hard enough to make sure (and we DO make sure) she complies with all her daily asthma and eczema routines... we'd have to be really creative to get her to take all those pills.Mikhaela from Safe & Scrumptious Bloghttp://www.safeandscrumptious.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-30720118848154770422014-03-14T20:56:25.859-07:002014-03-14T20:56:25.859-07:00Not doing baked milk at home yet because she faile...Not doing baked milk at home yet because she failed two previous baked milk challenges (hives halfway through one muffin the first time, and even worse hives a year later when we tried again). She failed baked egg too. <br /><br />We go to Mt. Sinai and they definitely are not waiting for her numbers to drop to 0 before we can challenge foods. She passed challenges to peanut, almonds, coconut and shrimp at age 2 and those four foods really expanded our options! (That said, they were probably false positives to begin with, says our allergist. But still!)<br /><br />After baked milk, hoping to challenge hazelnuts and cumin... those are the others where her numbers are low enough to give it a shot. <br /><br />Still a restricted diet avoiding sesame, egg, milk, tree nuts (except almonds) and mustard but EVERY little bit of new food is a cause for joy in our house. Mikhaela from Safe & Scrumptious Bloghttp://www.safeandscrumptious.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-3158678193802876152014-03-08T22:01:10.365-08:002014-03-08T22:01:10.365-08:00Hi FAB, thanks for the clarification. So, for me,...Hi FAB, thanks for the clarification. So, for me, like you, RAST is not something I am that interested in (although the general drop has to be a good thing). I will wait eagerly to know if the expected 50% drop in eosinophils/basophils was repeated again in the Phase 2 study and, of course, if the treatment generally was shown to prevent anaphylaxis--which I think is the primal goal for parents of FA children--although I am sure having the enjoyment of cheese and dairy is even more wonderful. :) I will, impatiently, wait for the results. Thanks for all that you have shared--it may very well have been a life-saver--God willing.<br /><br />Hi Carrie, my wife and I have read all of the FAFH-1 and FAHF-2 papers (about 4) and a number of related papers, which I why we feel that a 50% drop in eosinophils is generally what to look for to know if FAFH-2 worked--since in the Phase 1 study that was what generally happened.<br /><br />We are administering "do-it-yourself" FAFH-2 as a tea for our DS, along with a number of other supplements, probiotics, and diet changes. We are also practicing avoidance, even from oral and skin challenges, so we really obsess over the blood results.<br /><br />FAFH-2 is really just a collection of somewhat common herbs (with ginger, ginsing, cinnamon, and sceshuan pepper being some of the more common ingredients). That said, the papers on FAFH-2 on mice, and a number of other basic supplements (like licorice) or probiotics have been shown in scientific studies to perform wonders. It's totally unexpected, which is why we didn't even look into FAFH for a long time. But I am confident that FAFH is the best thing available and effective.<br /><br />I hope EoE does not results from overcoming allergies from FAFH. I did read a recent set of articles on kids getting EoE when the recovery from food allergies from the "eat nuts to overcome your nut allergy" approach. That actually makes sense, because eosinphils for that approach. But for FAHF, which acts by reducing eosinphils and basophils, I really doubt (hope?) that would happen.<br /><br />Best,<br />ShylockShylockhttp://www.google.comnoreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-64862273829189987682014-03-08T08:11:27.122-08:002014-03-08T08:11:27.122-08:00You can actually send a message to "Food Alle...You can actually send a message to "Food Allergy Bitch" on facebook. Just go to my page there and click on the message button. (I can't message anyone from the page who doesn't message me first.)Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-29363873083208967082014-03-08T07:54:10.556-08:002014-03-08T07:54:10.556-08:00Ha. I thought I posted that request here, but ne...Ha. I thought I posted that request here, but never got notified and when I looked looked again, couldn't find it. That's why I asked again. Sorry. I didn't expect you to post it here but didn't know how to message you privately. Carriehttps://www.blogger.com/profile/05321183009199818153noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-68503841257287086432014-03-08T07:19:50.337-08:002014-03-08T07:19:50.337-08:00Carrie, I replied to you on another thread - if yo...Carrie, I replied to you on another thread - if you message me privately on Facebook, I'll give you our allergist name/practice. I do try to respect my son's privacy at least a little, although it's hard to claim that after I've posted his test results. Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-60810848444081446642014-03-08T06:51:00.721-08:002014-03-08T06:51:00.721-08:00Is yours a group practice? I'd be interested ...Is yours a group practice? I'd be interested in knowing who it is, because we have not found good allergists and now that that what we are seeing Dr Li, We just use our pediatrician for scripts and bloodwork. Our last allergist was horrible. Was not up to date on research at all and got when I asked about the UKnow. Carriehttps://www.blogger.com/profile/05321183009199818153noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-69818099600053314862014-03-08T06:46:56.296-08:002014-03-08T06:46:56.296-08:00You're very welcome! Honestly, I think my husb...You're very welcome! Honestly, I think my husband and I got a littler pushier because of my son's age, but she wouldn't have gone forward with the challenges if she thought there was no hope. I do think she was curious (she's participated in other food allergy research herself). <br /><br />I think this is a very hard topic. None of us want to second-guess our doctors. At the same time, they are not LIVING these allergies. I do think there are doctors who discount how difficult avoiding an allergy can be. Plus, the research on all this stuff is changing monthly and not all doctors are keeping up. <br /><br />And then there's the very cynical take on all this: if the kid has a serious reaction as a result of a challenge, there's liability associated there. No challenge = no liability. I would hope most doctors would not have this mindset, but it's not unreasonable to assume many are risk adverse.<br /><br />I really hope the criteria for and frequency of food challenges is something the allergist community will comprehensively review at some point. I don't think many doctors see their patients' anxiety and lifestyle as within the scope of their medical practice. That's a missed opportunity..Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.com