Wednesday, February 15, 2012

"Total Avoidance": The Best Chance to Outgrow a Food Allergy?

I think there's a myth that's done a lot of damage to our community: Total Avoidance.

If you've been in this rodeo for any amount of time, you probably know what I'm talking about. You see statements all over the web that say "total avoidance of an allergen gives the best chance for a child to outgrow." The theory seems to be that the body somehow needs a rest from the allergen to "forget and reset."

I haven't been able to find the direct source of this myth, other than the statement that has been AAAAI policy for years: "there is no current treatment for food allergy: the disease can only be managed by allergen avoidance." (If anyone has a source, I'd love to see it.)

When my son was young, we didn't practice Total Avoidance. We read the ingredients and gave him food based on those ingredients, end of story. We even used to cut the (milk-containing) breading off chicken nuggets in restaurants, and take him out for sorbet at places where we just asked them to rinse the scooper. He seemed to have a fairly-high threshold to most of his allergies. Yes, he got stomach-aches or a tingling mouth or "that feeling" in his throat on occasion...but it wasn't anything major, so we did it.

After the incidences I'd described in other posts (food allergy reactionidiopathic anaphylaxis) we hunkered down and got educated. We read books. We found on-line communities and off-line support groups. We learned the Gospel: total avoidance was necessary, not just to avoid reactions but in the hopes of outgrowing.

It's easy for me to look back now and see that there was little evidence for this, but 12 years ago things were not so clear. Plus, this belief fed right into what I WANTED to believe. I was scared - terrified after his new allergies developed - and I wanted some control over things. Total Avoidance was a "truth" that felt emotionally right to me. It gave me control over something that felt completely out of control.

We quickly learned that Kosher symbols could be used to determine whether foods were produced on a milk line. It didn't matter if the foods contained milk, or if the line no longer even ran milk (as is the case with Oreos)...we avoided anything with a UD. And really - if we were going to control for milk, why not other allergens? We started making the calls. Calls to hundreds of manufacturers over the years, resulted in crazy direction about foods that were produced in the Ohio factory on Tuesdays when the moon was full, but in Indiana on Fridays when it wasn't.

There is no end to the slippery slope of avoidance. There was always a public surface that might be contaminated, or a child who had just eaten peanuts 10 feet away, or a swimming pool. Were we going to limit social opportunities to avoid even further? How could we not if it meant he could finally outgrow these allergies?

Around this time, I started immersing myself in the research. Before I was going to go whole-hog with this thing, I wanted to know what the scientific basis for all this avoiding actually was. Instead, what I found was Outgrowing Milk Allergy May Take Some Babies Longer Than Expected.

Hmm...provocative. It could be that the allergens themselves have changed, making these traditionally toddler-only allergies more persistent. It could be that the process of becoming allergic was different, resulting in a more persistent allergy. It could be that the length of milk/egg allergy had never been well measured, so the perception that they were outgrown in toddler-hood was simply wrong. could be that parents were doing something different, changing the environmental factors, keeping their children away from those small exposures that led to outgrowing allergies.
This last one haunted me. I had worked hard at avoidance and felt smug in my judgement of those "lax" parents who just took the cheese off the pizza, or cut the breading off the chicken fingers, or gave their kids the foods they could tolerate and dealt with reactions if they happened.

A few years later, tolerance studies began. People who, for years, had bad-mouthed the SLIT studies were suddenly questioning their assumptions. As a result of the tolerance studies, researchers broadened their attention to milk and egg allergies. Lo and behold, 80% of kids with persistent milk allergies (ages 2-17) could tolerate baked milk.

80%. There were no predictive criteria for who would fail. It didn't matter how old the kid was. It didn't matter how big their wheal was to raw milk (my son's entire arm swelled - he still passed). It didn't matter how severe past reactions were, or what type of symptoms were experienced, or how high RAST scores were. Wow.

As I've commented before, my immersion in the group-think badly prepared me for the fun of introducing baked milk. There ARE symptoms. Just as there were when my child was a toddler and we used to cut the breading off his chicken nuggets. Only now, we're far more anxious about those symptoms because of our Total Avoidance conditioning. And, I know there's a whole generation of food-allergy-dogma-immersed parents and children behind me who are going to find working through these allergies with baked foods very painful.

Would I do it differently, knowing what I know now? It's tough to even consider that. But yes - I was a lot more carefree in my child's early years and it makes me angry that my investment in Total Avoidance was probably a waste, and possibly even detrimental.

Don't misunderstand me. I would still not give my child food with a "may contain peanut" label since we know a good percentage of those foods DO contain peanut. But...I wonder if I had to go as far as I did down that slippery slope. And I wonder a great deal if his milk allergy needed to be handled with the same extreme degree of avoidance as his peanut allergy.

After the debacle of food-allergy advice from doctors (avoid nuts during pregnancy, avoid introducing potential allergens to siblings, etc.), I know doctors are hesitant to take a position on this since they cannot be certain. Plus, they don't want the liability should a child have a serious reaction as a result of the "laxness" of parents. BUT...I do not think doctors should exempt themselves from the MENTAL health of the families they counsel. Not taking a stand IS taking a stand.

I hesitated to write this column because I do not want a parent new to food allergies thinking this is medical advice. IT'S NOT. You need to ask your doctor where he/she stands on this issue and decide for yourself.

I'm just here to bitch about it.


  1. Yes!!
    Question these nuggets of popular wisdom, no matter how commonsense they seem. I've pondered this sort of thing a lot over the years; it's astonishing how frequently there is no science behind recommendations or conventional wisdom!

    I know that parents sometimes go to considerable lengths to avoid exposures well beyond what they have seen reason to fear, often in the hope of "making" their kids outgrow. It is crushing to think that it really might be making things worse instead of better.

    It's difficult (and maybe it *is* foolhardy) to be laissez-faire about an allergen that you know as an anaphylaxis trigger. With high sensitivity or a super-potent allergen, too, there is no really good way of doing this safely at all, since cross-contamination is so inherently unpredictable. (So nut-allergic people, uhhhh... this is NOT a DIY project. Ever.)

    Even so, I've finally come to the conclusion that "cross-contamination OF cross-contamination" is a far-fetched enough risk that is worth taking in some cases, at least with a child who is aware and responsible. We did it ourselves with milk (long story-- child REdeveloped a clinical milk allergy at 6yo when starting SCIT for aeroallergens), and by golly, we seized the chance with egg, too. Even though egg scared us. Badly.

    I was terrified the day that we did a formal challenge with baked egg. I packed a go-bag and assumed I might spend the next 72 hours with my daughter in critical care. I rationalized to myself that our allergist was someone that I trusted completely. In the worst case, at least we'd all get a great look at what might hopefully be typically "atypical" anaphylaxis in action. Some rationale, huh? I never allowed myself to imagine her passing the challenge. (She did, albeit at a very low dose.)

    Painstakingly tiny and meticulously measured dose increases have tested our resolve. It's not been symptom-free by any means. We've even seen some evidence that other allergies may temporarily worsen or increase in sensitivity during dose increases (just like milk and SCIT six years ago). It feels Faustian sometimes.

    Still-- it's been a miracle, particularly for us as the parents of an adolescent on the cusp of venturing alone into the world. It's the first real hope that we've had in a decade, although we realize that our child may never be completely desensitized. Could it have been different if we'd not avoided like that for a decade? We'll never know.

    I'm now more convinced than ever that it is only wise to avoid well enough to prevent major reactions. Of course, it frightens me that the truth of outgrowing "childhood" allergies... may embolden those who are already callous to children who need pretty extreme avoidance for basic safety.
    That's all we need. I just *know* that horrible person ("you're not helping your kid, you know, with all this avoidance, you wacko helicopter parents") will be a school administrator or PTA president somewhere. Yuck. It's very individual, as you've noted-- 80% means that 20% do NOT pass, and there's no way to know who is who.

    Thanks for bringing this one up. I felt so bitter as the years rolled away and my child was one of the unlucky ones. It felt unfair. Worse, it felt like parental failure... as though I wasn't doing a GOOD ENOUGH job of avoiding, or we'd have found our golden ticket, too.

    There is still so very much that we don't understand about how sensitization (nevermind DE-sensitization or tolerance) works. It's so maddeningly complicated.

  2. "I felt so bitter as the years rolled away and my child was one of the unlucky ones. It felt unfair. Worse, it felt like parental failure... as though I wasn't doing a GOOD ENOUGH job of avoiding, or we'd have found our golden ticket, too." Wow!!! I feel that SAME way. My son is 4 and not getting even close to outgrowing his allergies. I've been kind of lax parent about some of them the last year or two and I blamed myself for him not outgrowing the allergies. I even felt guilty for allowing him to get an MMR shot thinking that I just "undid" all the avoidance "work" towards outgrowing his allergies. Its SO frustrating....

  3. I would like to add this: I grew up with environmental and soy allergies. My parents knew of the environmental but not about the food allergies until I hit my teenage years. Then, I hit the roof. I couldn't tolerate fresh fruits, soy, celery (weird I know), cucumbers, and much much more. Nearly all of those have triggered anaphylaxis. I moved to a different climate zone for a job and many of my allergens calmed down. I still had to use an epi pen at least 3 times over 3 months (no hospital in the area). I also discovered that stress and hormone swings makes allergies worse. It may not for anyone else, but the way I see it, food allergies act a lot like autoimmune diseases where the body attacks itself thinking there is a toxin where there is none. Five years later, my allergies are at an all time low. I manage my stress (physically, emotionally and mentally) and I happen to have a problem that causes extremely low estrogen and progesterone. I still avoid the major triggers- anything soy, celery or celery seed, fresh bananas and fresh strawberries, but I can tolerate many of the others. I have a theory that if you can lower the other stresses, other kids food allergies may lessen.

  4. Hi - I am not here to argue any of your points, but just to offer an experience, take if for what it's worth.

    When my one year old was found to be allergic to peanut (face and lips swelled up with a rash to the first exposure by a well meaning relative), we did total avoidance for one and a half years, and I mean we were militant. She ate nothing that was not made by me, and every ingredient in our house was not allowed to be produced in a factory with peanutes etc etc. Even my husband's mueslie was banned and had to be homemade (it was gross, sorry!). We also avoided all nuts, seeds, and their oils.

    It was hard. We were told we had a 20% chance of outgrowing it, which would be helped by her age (being so young at the 'reset).

    Anyway, at the 1.5 year mark we retested (blood, prick, and challenge). Her prick went from 7x4 to 2x2 (histamine was 3x3), and food challenge went fine. Her Immulite kU/L was <0.10, which is considered negative.

    She has for the last 4 years been getting a tiny bit of peanut butter every week and does not react to it, though at one point she ate a tablespoon and got a terrible tummy ache.

    So while not a total cure, something changed, and I do not feel I need to worry so much about a severe reaction. Maybe it had nothing to do with what we did, but I have not heard of a lot of kids outgrowing a peanut allergy to the point they can be exposed and not react.

    So maybe, just maybe, there is something to it. Or I am a sucker and she was going to outgrow it anyway. I'll never know, but I am glad I tried it.

    Cheers, and best wishes to everyone, I know how hard it can be, and how lucky we got.

  5. I have actually heard of several children who outgrew their peanut allergy. Some had only had positive test results with no reaction; others had demonstrated reactions and still outgrew it. Studies show about 20% of kids do outgrow. The question is whether there's anything we can do environmentally to help the process along, or whether those kids have a different type of allergy, or immune system, and were simply destined to outgrow no matter what happened.

    You should definitely mention the peanut allergy to your daughter as she gets older, though. I have heard stories about people who outgrew an allergy and then had it return in their 30s or 40s as their immune system changed again. My mother actually had a milk allergy as a child, and is finding it's back again now that she's in her 70s! Unfortunately, "outgrow" may simply mean to have a threshold that is so high as to no longer matter...but a threshold that can also change with other stressors.

    In any event, thank you for sharing your story. I certainly don't have all the answers and am always interested in hearing about kids who no longer have to deal with a food allergy. :)

  6. My daughter had a list of 12 allergies (some of those are entire food groups) when she was 18 months old. TOTAL avoidance was simply not realistic. We did our best but that included much of what you described (removing breading from nuggets, cheese from pizza, crusts from multigrain bread). If she didn't react to something that "may contain" an allergen or did contain a baked/processed allergen, then we would let her have it again. She is almost 6 now and has outgrown almost all of her allergies, including milk and eggs (both of which had RAST >100 when she was 18 months), soy and lentils. Her RAST numbers for peanuts and sesame seeds are going down but her nuts numbers (the only thing we do strictly avoid) are going up. Anyways, I have no answers but I enjoyed your essay immensely and was vigourously nodding my head throughout!

    By the way - on the subject of recurring allergies in adulthood. I have read somewhere that the recurrence is more common in people who continued to avoid the allergen. Another reason why I am a big believer in challenging allergies rather than avoiding allergens "just in case".

  7. Hi! I am new to food allergies as well as your blog - thank you for so much valuable information! This post in particular really hit home for me. My dd is 13 months old and reacted to peanut at 11 m/o with hives and vomiting. The allergist we took her to confirmed her allergy via SPT. The allergist tested her also for tree nuts and shellfish, since she had never eaten them in more than trace amounts (with no reaction) and we weren't sure how to introduce them. The results came back positive for shellfish, negative for cashew and "equivocal" for walnut. The allergist told us to avoid all tree nuts and shellfish based on that outcome, including "may contain" items. While I have followed these instructions so far, I am agonizing over this decision. Will my avoidance prevent her from developing those additional allergies, or am I actually setting her up for them instead? Is this a typical response from allergists, or have you heard of other allergists who might have her try some of these other foods? Also, aside from the total avoidance issue, are there any things you're glad you did or wish you'd done when your son was small to help him outgrow his allergies, based on what you know now? Any input is appreciated - I feel like we are at a critical point in our journey. Thank you!

    1. This comment has been removed by the author.

    2. First off, I am not a doctor. I try very carefully to not give medical advice and you should not take it as medical advice!

      Allergists are vastly different in how they approach these things. Many allergists advise against a "fishing" trip that looks for allergies without the child having had a reaction to a food, because these tests have false positives. 13 months is also very young to do this type of testing. On the other hand, tree nut and shellfish allergies are serious, so you definitely do not want to be doing a do-it-yourself food challenge!

      My personal belief on all this is that the introduction of food has little to do with the development of allergies, and the research has supported that. Studies where parents have delayed introducing certain foods have not prevented the allergy from happening. No one knows how children get sensitized, but it does seem to happen independently from the allergen itself.

      If you read the latest column I wrote, there is a link to new research. In that study, parents who strictly avoided foods had a better chance of seeing their child's allergies resolve.

      I think this is a difficult dance. I wish we had tried introducing baked milk much sooner than we did, but everyone said strict avoidance when my son was young. That's completely new thinking. Unfortunately, tree nut and shellfish allergies don't behave in the same way.

      Bottom line is that, if I were you, I'd wait to see the outcome on the patch trials. It make be that cutaneous introduction of allergies is the best way to desensitize kids. But we just don't know enough yet to pick a path, other than avoidance. :(

      (Edited for typos.)

  8. My 14yo son is allergic to cow's milk. Has been since he was born. We practiced total avoidance not to help him outgrow the allergy, but to keep him alive & breathing. After one anaphylactic reaction, all experimentation goes out the window. I don't think I've ever even considered that we were avoiding in order to 'reset' or help him outgrow the allergy. I don't recall ever hearing that as a possibility. We were just doing it to keep him safe.

    Fingers crossed, by the way - he had a negative skin test last week. Waiting for blood test results. And, if that's low enough, we're doing a food challenge.

  9. Hope it works out for you guys, Maureen! Getting rid of milk allergy is life changing.

