Other online groups. Ugh.

[Jessica]

There are people on the fb group that feed may contains. Only thing is, when someone asks about a food they'll say "oh it's safe" without mentioning that they give their child may contains. Dangerous stuff.

[CMdeux]

Well, that isn't MUCH different than most places, honestly.  We have people here who live with pretty different threshold doses and have lifestyle modifications that reflect those differences.


I guess the only difference is that most of our most prolific posters often ASK about it in threads where there is a question.

[Jessica]

I see it a lot more on the FB group and a lot of simple 'it's safe' statements. I know it's up to everyone to do their own checking but it still bugs me.

Today someone said that nestle crunch bars are safe. I guess if it was me, I'd say "it has a warning but we haven't had trouble with it" etc. She did eventually say that but after someone asked for clarification. 

[twinturbo]

In my mind the one trait we all share here is we ultimately care more if we are objectively accurate and precise rather than subjectively right.

[CMdeux]

Yeah, more explicit, detailed information is more useful, basically. 

[lakeswimr]

I have only looked there a little but was put off by the arguing and then put off by a time one person mentioned that a particular food was free of milk, egg, peanut and tree nut and got rebuked because the board is only about peanuts and they can't be responsible for keeping track of milk and eggs and other allergens.  It was just extra info and wasn't something anyone had to keep track of.

I would not like seeing people say 'may contains' are safe.  I think that's very dangerous.

[candyguru]

I see it a lot more on the FB group and a lot of simple 'it's safe' statements. I know it's up to everyone to do their own checking but it still bugs me.

Today someone said that nestle crunch bars are safe. I guess if it was me, I'd say "it has a warning but we haven't had trouble with it" etc. She did eventually say that but after someone asked for clarification.

Nestle Crunch is safe?  That is not a wise thing for that individual to say, as it definitely is made on equipment that processes peanuts.  I never eat it, as there could be cross contamination as per the label.

I just checked the Nestle Canada web site and this is what it says about Nestle Crunch which definitely is not safe:

Ingredients- MILK CHOCOLATE (SUGAR, UNSWEETENED CHOCOLATE, COCOA BUTTER, MILK INGREDIENTS, LACTOSE, SOYA LECITHIN, POLYGLYCEROL POLYRICINOLEATE, ARTIFICIAL FLAVOUR), RICE CRISPS (RICE FLOUR, SUGAR, MODIFIED PALM OIL, GLUCOSE, SALT, CALCIUM CARBONATE). MADE ON EQUIPMENT THAT ALSO PROCESSES PEANUTS/NUTS. CONTAINS TRACES OF WHEAT GLUTEN.

[Jessica]

When questioned about it, she said her child has "been cleared for those warnings" and they haven't had a problem. Sounds a bit risky to me. There are also parents there that let their PA children eat plain M&Ms which would scare the crap out of me as well.

Then there are some that go in the opposite direction, like the one I posted about when I asked about the nestle ca candy bars that said she would not let her child have the full size candy because there was no nut free symbol, which meant no 100% guarantee, even though they label super well.

[CMdeux]

I kind of look at that sort of thing and figure that unless they are proselytizing that POV, it's not really any of my business what someone's personal comfort zone looks like.  Assuming that they are reasonably aware of what they are doing, I mean.

I can't assume that someone who is presented with a particular set of facts is necessarily going to interpret them the same way that I do.

There's fact, there's theory, and there's conclusion/hypothesis.

I figure that as long as the facts and theory are being shared, I can offer my opinion on the latter, state why I think it's defensible, but ultimately, that's that.


I have no doubt that some allergists are telling some patients that 'may contains' (or perhaps-- PARTICULAR may-contains) are okay.  With a high-enough threshold, that risk may be reasonable for some people and some manufactured items.   There is increasing evidence to suggest that excessive avoidance may be as bad as inadequate avoidance, though for a different reason... it seems that excessive avoidance is a great way to generate a super-low threshold.

  Avoidance is for avoiding reactions, period.

That's not to say that I think that a blanket "may contains are fine" approach is okay.  Clearly it isn't-- because those levels are wildly variable, and it's basically playing Russian Roulette with an allergen, doing that.  There are a small handful of manufactured items with fairly constant levels of contamination, though-- and I think that M&M's may be one of those things.  I also suspect (but do not know) that some packaged soups and Kraft marshmallows are also among those things.  My DD whose threshold just naturally seems to be that low reacts to those things every time.  I do NOT recommend that people who have tolerated those things just fine remove them from their diets, however.

<shrug>  It's just so individual.    It's arrogant for me to assume that I know more about a child's sensitivity than his/her parent and physician, though...  I mean, I may suspect that a physician is not entirely competent (and do often advise that people seek second opinions) or that a parent is having emotional baggage get in the way of effective management... but that is different than thinking that I know BETTER than Mom or Dad.  After all, I don't know the full backstory from just a few posts on the internet, and probably never will.  I have to assume that they have reasons and that they love their child. 

[lakeswimr]

Overall I agree, CM.  I think the thing is that the current standard of care is that if there is any type of warning to avoid.  That's the overall, general advice that food allergy organizations, etc all recommend.  However, there are certainly cases where people are told to eat may contains.  My son is one example now that he can eat baked milk.  He can also eat some may contains, depending on a few things.  May contain whipped cream--no thanks.  may contain other forms of milk, for the most part yes, just fine for DS.

In the case of the FB page if it is a person asking, 'is such and such safe' or 'what types of chocolate bars (or whatever) are safe?' and someone replies that something is safe without any mention of an allergen warning on the product or any disclaimer I think that is quite dangerous.  There are many new people who do not have allergists and have pediatricians, ENTs and other docs who don't know FAs well who would not tell them to avoid may contains.  There are people who falsely think that 'shared equip' is more dangerous than 'same facility' when there is no standard definition for either type of warning and they can both mean risk.  I think the FDA study found same facility had a higher % of xcontam than shared equip. 

So, given that I would say that the situation is dangerous.  I'm certainly not a doctor or a medical expert.  But the blind leading the blind on a topic like this scares me.  I think so will end up having reactions as a result.

And I could be wrong but it seems that you may not be able to state your opinion at that site.  People were told they were being bossy for telling others that may contains were not safe and other things.  It seemed that some people had posted things I find very unsafe and others posted back and told them so and were told that wasn't OK. 

There is a grey area and all that and I am of course open to differences in individuals.  My son has differences in how he treats his own FAs from allergen to allergen based on reaction history, test results and our allergist's advice.  So, yes, I agree with you overall but I don't think that is exactly how it is working at that site and i see accidents waiting to happen as a result.  HOpe not but that's what I see.

[CMdeux]

Agreed-- and that's where it runs into trouble for me-- to proselytize or fail to adequately explain the conditional logic behind a statement.  Unqualified "this is safe" or "this is unsafe" doesn't really fly with me...

there has to be a logical reason behind it, IMO, and as often as not, it's related to an individual sensitivity or history.

I don't trash Kraft or Hain to people who have had good luck with them-- just make it known that we haven't, and why I suspect that this is so.  I also definitely don't encourage others to buy bulk... though we do and have for years. 


If someone asks me "is such-and-such safe" my answer is "that depends."  Always.

[SilverLining]

I think part of the problem is fb groups are not easy to look up old info posted.  Here things can be somewhat compartmentalized...not so on fb.

That is a large part of why I do NOT encourage a lot of allergy chatting on our fb page.  Also, I like that here we have a lot of people with different points of views and experiences.  And when someone appears to be spamming with incorrect info, they get called out my multiple people that I know and trust.  (Not just mods....everyone here cares and many will speak up.)

[lakeswimr]

CM - What do you buy in bulk?

IME when people say such and such food is 'safe' it seems to be based on reaction history more often than someone having actually taken the time to call the company and ask questions.  Not always, there are a lot of people who contact companies and ask questions but many don't do this.  And those who don't do this should not be saying, "such and such is safe" in *my* opinion.  I say that as someone who didn't used to call companies and had their child have serious reactions, even ana from cross contamination.  My son had eaten some foods with no reaction for years.  I know now that we were just plain lucky.  Now, if you asked people, would you eat a food if you have a chance to have anaphylaxis from it every few years you might get a range of replies but my feeling is, 'no, thank you.  We will skip that food.'  I consider a food like that unsafe.  And of course risk could be very different from that.  It could be the very next time we eat the food that it causes ana again rather than a few years later.  There are foods that don't clean for non-top 8 at all and so if you get a batch made right after a non top 8 was run it could have 100% chance to cause ana, while later batches might have zero risk.

I personally think it is good for people to know that you could go years eating something with no reaction but that this alone doesn't mean the food is for sure safe and that xcontam can still happen so it is a good idea to call companies if you want to avoid situations like what my son experienced before I started calling companies.  Doesn't mean everyone will or should start calling but just that it is good to know this is a possibility (xcontam in a food that seems safe based only on eating it.)

[Macabre]

I agree Jessica. Posting a blank statement that something is safe is dangerous.

And there are lots of newbies in that group.

[twinturbo]

I don't follow FA groups or FB groups or FA mom blogs but for me the larger danger is the mismanagement of reactions. FARE gets an A+ from me in its new form which as good as it is can't seem to get the message out to that last entrenched segment that either doesn't accept anaphylaxis as defined or flat out doesn't want to deal with anaphylaxis is totally happening.

Food manufacturing, living with allergens in home or not, all personal risk calculus. Treatment of anaphylaxis and acknowledging it as such when and where it happens, less room for interpretation there. The whole only throat closing as a sole requirement, or "just" pukes and gets hives, etc. We have to consider that people are really getting this type of info from a doctor. There's a reason some of us carry the anaphylaxis grading chart and EAPs on us.