HELL yeah.

What guess just said. 

1. I'm pissed.

2. What I would want people to know, what would make things safer if not necessarily easier, is to STOP referencing wheat and barley as an ALLERGEN if the reference is not to IgE-mediated allergy and anaphylaxis.  STOP the conflation.

3. START realizing you can hurt someone by doing so. 

4. Before I forget, buckwheat is not related to wheat.  End of story.

Here's a day in my life.  Just add the "casein" free lifestyle. 

http://youtu.be/AdJFE1sp4Fw

I tell people I am lactose intolerant and they assume it is a allergy!  (oh and some will say, then you can't have egg either, it's dairy!) 

People who don't live it don't understand. 

Since having DD and learning to maneuver around the mine field of food allergies with dairy being one thing she can eat, I no longer try to explain my situation anymore. 

My life with milk allergy would be easier if people would get a grip on the fact that milk allergy is not the same thing as lactose intolerance.  No one dies from lactose intolerance.  I cannot even count the number of times that I tell someone I am allergic to milk and they say "oh yeah, I have a friend who is lactose intolerant too".  That really annoys me.

A big issue for DS1 is his allergies to wheat, rye and barley which essentially makes up gluten.  But you have lots of places that assume this is a phase or some weird diet for him.  Many places, like Domino's cater to the pseudo allergic so while they have a GF pizza, it is not safe for him as it is on shared lines and facility with gluten.  Whereas other places like Uncle Maddios (owned by Moes) gets the difference between allergy and intolerance.  And while I hate the shouting at Moes, it brings a smile to my face when I hear "It's an allergy pie" and everyone stops to change gloves, kwim?

I no longer trust Whole Foods 365 labeling because it's not worth a hoot - they cater to the pseudo allergic, not those who suffer with Celiac or true allergies and blow you off if you have a reaction.  This is not a fad, this is a life or death diet.

I know others disagree with how we handle his allergy at home but we do have wheat containing products in the home (he was the oldest and was diagnosed just prior to becoming pregnant with DS2).  But we have restrictions on those products.  I cannot bake with wheat in the house because it causes airborne reactions for him.  But I can bake something that is premade (like refrigerated biscuits).  But pans that bake wheat or cook eggs are segregated and other precautions are in place such as parchment paper.  Dinners are always free of allergens but lunches and breakfasts are not because they tend to be short order items.  On pizza night, I do buy GF pizzas for him and my MIL (because they are roughly $6 for a pizza the size of a Totinos because his egg allergy) but make gluteny pizza for the rest of us. 

My MIL developed issues to gluten about 3 years ago.  She, IMO, falls into the fad diet category.  Yes, gluten causes her an issue but she will survive if she peels her hamburger off her bun (something I did once early in the journey and regretted immediately) and can handle Whole Foods products whereas DS1 always reacted.  If we shop at certain times in one grocery store, DS1 has to wear a mask in the produce department because they are mixing flour.  It doesn't bother MIL at all.

Holidays are a pain unless we stay home because I cannot make people understand cross contamination at all which means that I have to cook an entire dinner for the kids and MIL to bring with.  And then there is the panic if someone accidentally contaminates safe dishes.  And while DS1 has come a long way in regards to anxiety - it freaks him out.  I will say both boys are okay with different and I don't feel obligated to recreate the same in regards to treats.  I think DS1 learned early on that was not in my repertoire. 

Yes-- I just tell people what we NEED from them.  Not the whole story.

So I never mention anything that hasn't caused life-threatening reactions in the past.  This means that nobody around us is much aware of the fact that we avoid aloe, mango, apples and certain legumes other than peanuts for DD.  Nobody is aware that her milk tolerance is still not normal... and thankfully, we are rapidly reaching this point with egg-- other than mayo, of course.

In a restaurant setting, we prioritize--

peanut=cashew=pistachio>shellfish>egg> other stuff that we manage without communicating with kitchen or waitstaff.  Yes, some of the "other" is dangerous, but for reasons of our own, it's only going to muddy the waters with laypersons.  Civilians, as DH calls them.

Yes!  Qualifiers make food allergies complex and when I listen to DD try to explain it to a waiter so she can have more options....I wonder if it is worth it.  Her choices are so limited.

If egg is baked into something containing flour, it is ok, but without flour like a meringue, as a wash or actual egg it is not.  And garlic powder is ok, but fresh, dehydrated, and paste are not!

I get the science of why and I have taught DD that.....but for someone who really could care less except for getting a good tip....it's too complicated.

Links, I worry about being one of 'those people' as well.  There are the things that I can't have at all, OAS foods that always cause a reaction, OAS foods that only cause a reaction when my environmental allergen load is high, I can eat baked eggs but not straight egg or raw egg, and soy oil and lecithin is fine (unless it is a ton of soy oil), but soy protein is not ok at all...

I've just gone with telling people the things that I can't be around at all and reading everything myself or just not eating.  DH's family has finally gotten used to me coming to events and not eating.

When dd was 1st diagnosed, awareness/understanding of sesame allergy seemed pretty low & food labeling was not good which made things difficult. 

With sesame allergy, some kids are actually able to tolerate small amounts, and it seems that (at least currently) my dd falls into this category.  Just a reminder that sesame-allergic people should strictly avoid ALL sesame unless their allergist advises something different.  This has taken the edge off of allergy management for us ... yeah, we still avoid most sesame & carry an epi, but I no longer have to worry about every.stray.seed. 

Sometimes, I feel that I have turned into one of "those" moms .... you know, the "my child is allergic (to sesame, kinda to egg  , and oh yes - the maybe OAS stuff) ... but she can have a little".  Most of the time, I don't even bother trying to explain it to people.  I just tell others not to give her sesame & dd knows to go easy on the egg.

Wanted to add that when this board as a group split from way-over-there, one of the things debated was the name and what we were to "be" . . . we became a FOOD ALLERGY support group rather than a PEANUT ALLERGY support group . . .

there was always a sense of need for inclusion.   

Among other things. 

Quote from: MaryM on November 06, 2014, 09:33:21 AM
Life would be easier if people realized that dairy is not just milk.  Can't tell you how many times people have said oh dairy allergy, your kids can have butter right?

QFT and we in our home don't even have to deal with dairy allergy! 

Once upon a time I was horrified by comments such as "just avoid peanut butter" for your PA kid.

But now that I've aged a bit (um, 15 years since that kid's ana reax) . . . I am stupefied by the comments I hear and read as to dairy allergy and the "just avoid milk" crap.







Sometimes I wonder if people are REALLY that uneducated?  But that might be a topic for discussion in another thread! 


Lauren's Mom -- GREAT TOPIC and discussion!!  Thank you!

Life would have been easier when DS was just a little bit younger and his life up to that point (when he became not so contact sensitive) if people didn't eat all over the place all the time as society now does and if they washed or wiped their hands after, if they understood that all FAs are potentially life threatening, not just peanut, if they had to label for all foods, not just the top 8.  I had to call every company to find out of their foods had sesame in them because it is as potent as peanut but does not have to be listed on food labels.  That's a heck of an allergy to deal with.  Corn and other lesser known and not required to be labeled allergens are also really super difficult to avoid. 

Having people tell me, 'at least it's not peanut' about DS's other FAs and having to tell them DS has peanut AND other FAs and have them not understand has been a given throughout all this.

So, from my perspective, I dislike when people with just peanut allergy minimize other FAs.  However, peanuts and seeds are more potent than other allergens in general and I dislike when that gets dismissed by some as well.  Both can be true.

Someone here said it is all about individual threshold.  My child has had ana at events where he hadn't eaten anything for hours before or during due to contact ingestion.  So, my child needed handwashing, needed to skip various events, and needed various accommodations at school.  the fact that other kids have FAs and don't need these accommodations means nothing in terms of what my child needed.  I would focus on your child's needs, your child's reaction history and I'd try to get a letter from any doctor of your child's backing this up and recommending the school do the things you child needs in order to be safe. 

Good luck!

Quote from: YouKnowWho on November 06, 2014, 12:46:38 PM
Life would be easier if people took other allergens as seriously as peanut.

True dat!

When DS started school, I was at the office discussing his allergy. The woman I was speaking to went on so proudly about the school banning peanuts, yadda-yadda-yadda.  I let her finish and said something like "I'm sure that's very comforting for parents who's children are allergic to peanut.  But that's not what my son is allergic to." And she said "if he's not allergic to peanut, what's he go an epi-pen for."   

I think maybe they were not completely to blame. There were so many kids with allergies, but the parents referred to them as "not serious".  One mother who said "oh, it's not deadly like peanut, she's just a little allergic to milk".

Life would be easier if people took other allergens as seriously as peanut.

Short and simple and to the point.

There were guidelines in school in regards to my PA kid (who has never had a known reaction, but tests positive) that I thought were overkill for him but I knew others who had PA children appreciated so I was quiet because ultimately it would cause him no harm but if I was to confuse the issue, it could bring harm to those who do need those precautions, kwim?

There were no precautions for my wheat, rye, barley and egg allergic child and it was the whole attitude that this is totally on him and not on us attitude that pissed me off. 

So my child who has had no known reactions gets a better grade of care than my child who has suffered from anaphylaxis because well, it's just easier.

Yes, after all these years, this is a hot button topic for me.

Our life would be easier if people didn't eat everywhere, all the time.

If people washed their hands compulsively, _{the way they do when they are afraid of ebola}.   

The other thing is that no exposure is really "free" exposure when you're someone like DD, or Janelle, or one of our other members who live with that evil trio of non-PA, low-threshold, severe reaction history...

so even exposures that you kinda get away with fill that cup up, and make "the big one" that much more likely from a different exposure.  We're currently living that one, too, with DD in post-secondary. 

I'm starting to understand how it is that a student could find him/herself spiraling out of control in a post-secondary setting, honestly-- the lack of control over one's surroundings is really a-- a-- well, okay-- MFA, indeed.  The residue is SERIOUSLY pervasive, and it's a constant barrage of low-level exposure.  DD's allergy cup is so full that she really has almost no buffer for the occasional exposure via a more concentrated environmental source. 

A single reaction that is more major, recall, ALSO leaves one primed for weeks or months afterwards, too-- so this is a major worry for us right now.     It's probably inevitable.  But I sure don't find myself being very happy about it.