Anyway here is the post-it is quite long-sorry about that:
a LOT of people have no idea what it's like to have to worry about peanut/nut allergies. They don't have to live it every day so they don't think about it. I probably wouldn't either, if our family didn't have to deal with it. A lot of kids are developing them now for whatever reason. We can analyze it to death how it happens, but the fact remains that peanuts and nuts can be deadly for some kids. I'm not going to go into the school thing (we homeschool so I have no experience there) or any other social things. Just a few things we have to watch for. A lot of people think it's as easy as just avoiding foods with nuts in the ingredients or labels that say 'may contain nuts'. Well it's not that easy. A few recent things:
Miracle Gro, Scotts, Vigoro and Schultz (all garden companies) have all told me that their products may contain peanut shells, nut shells or parts of peanut plants. They don't know if all bags have them, or the actual ingredients, or anything but they do know that they *could* be in there.
I just read that Walmart brand Mac and Cheese has a 'may contain traces of peanuts' warning on the box. Mac and cheese. Same with Walmart brand frozen green beans. Good chance that Walmart is covering their butt by putting the warning on almost all of their products but who wants to take the chance?
No generic foods, ever. They don't usually have manufacturer information so there's no way to contact them to find out if they're safe. Oh wait I take that back. We buy generic bottled water and store brand milk.
Even Pizza Hut is no longer safe for us. But we wouldn't know if I hadn't looked at their allergen info online. Luckily we haven't had a problem there but I am not taking the chance. Other people have had mystery reactions there and now they know why. Pizza Hut was the ONLY 'real' restaurant we could go to (there are others that are safe but we don't have them here). Our Dominos (also not always safe) and Papa John's (horrible cs) don't have inside seating. (Since I wrote this Papa John's has become off limits. They have a new dessert that may contain nuts and even though they assured me they would be careful not to let anything that touched it touch our pizza, our daughter had hives right after eating the pizza)
Restaurants like Texas Roadhouse or similar steakhouses would be completely off limits because they would be reeking of peanut dust.
All bakery products are off limits for us. Even if they don't contain nuts, they may have been touched by utensils that touched nut-containing products. Bakeries, unless they are completely nut free, won't ever guarantee their products are safe. We can buy specialty products from nut free places but they are EXPENSIVE.
Minute Maid makes an orange juice that contains plant sterols, some of which may come from peanut plants. So we even have to be careful about which orange juice we buy.
Most restaurants are risky even if we never order anything with nuts. If they make plain pancakes, for example, on the same grill as walnut pancakes, the plain ones are not safe. Around here, if you ask about their policies regarding allergens and preventing cross contamination, they look at you like you have three heads.
We don't buy any Hidden Valley products because when I called, they said they don't know if their products might contain nuts and they refused to tell me. Some other brands are completely or almost completely off limits. They are either not safe for sure or not within my comfort zone. I won't buy anything from Hain Celestial. I will buy very little from Con-Agra. Very very little from Nestle.
We have to be careful about buying produce. If someone has touched the bin of nuts and then the apples, the apples are now contaminated. We have to wash everything, even bananas, thoroughly. Speaking of bins of nuts, we went to a store that had open bins and we avoided the area they were in yet my daughter got hives anyway. We haven't been back to that store.
Some stuffed animals contain ground up nut shells.
We check our groceries carefully. You know how sometimes they will open a box w/ a knife and accidentally cut through the pkg inside? Well if it's that way we don't buy it. If the knife was used to open something with nuts before then it could possibly contaminate any other pkg it accidentally cuts into.
Body products have to be checked carefully. Cosmetics don't have to follow the same labeling law that foods do so if the fragrance contains nut products, it may not (and probably will not) be disclosed.
The company that makes Stella cheese told me that their products may not be safe for people who are allergic to nuts. Cheese.
A lot of healthy and organic foods are off limits.
Flying would be scary, to say the least. I can't even imagine what would happen if someone had an anaphylactic reaction during a flight. And with the recycled air and the amount of snacks served and brought on board, this could easily happen.
I have been looking for years for a bird seed that my daughter can handle safely. As far as I can find, none exist. I have called the Audubon society and the Wild Birds Unlimited in our state and they can't help. Even seeds that should be safe could have been stored or transported in the same bins in which peanuts were previously stored or transported.
We only buy used items if they can be washed thoroughly. I get nervous when we get library books. Same with Netflix videos.
I know there are a lot more things. People think I'm crazy when I mention we can't have generics (even stuff like mac & cheese that you would think is safe) or that we have to worry about things like rice, flour, etc (Kroger's brown rice may have almond cross-contamination).
I know that a lot of people and parents of allergic kids don't have as tight a comfort zone as we do and may not worry about these things. Our allergist thinks we're doing fine considering that our daughter has not had anything worse than hives so far (full body ones once, and we had no idea why) other than her initial reaction. Mystery hives are a common occurrence.
13 comments:
You are right, food allergies are no fun! I did notice that the Girl Scouts are really good about labeling their order sheets appropriately! That made it nice when we sold cookies.
My kids do not have food allergies, but severe allergies to cillins. It certainly is not nearly as bad as you have it, as one does not typically come across those products in everyday life.
Hopefully with the increasing incidence of nut allergies, companies will come around and be more forthcoming.
I know many kids that deal with food allergies too and it's so so hard trying to keep the little ones safe... Parents bring all kind of treats to school never checking first to see if there treats might be a problem...What a added job you and your family have trying to protect your daughter My heart just goes out to you!!!!!
Food allergies suck! As a child i was allergic to ALL dairy products, growing up on a farm this was pretty traumatic for my Mum. I still can't touch raw egg as I break out in hives and can not have any vaccines that may have an egg base. Otherwise I am fine now. My nephew has a nut allergy and I think it is probably the worst allergy because as you mentioned... there are alot of nuts out there, whether you are aware of them or not.
I had never realized the extent people with peanut allergies had to go to avoid peanut contamination. Thank you for explaining it. I can't imagine how hard it is for your family to have to constantly worry about it. People like me who don't have food allergies take so much for granted.
Great post. I call food manufacturers all the time as my son is allergic to dairy, eggs, peanuts and tree nuts. Thanks for the head's up about Hidden Valley, Con-Agra and Nestle. I'll be checking them more carefully. You're right- many people "don't get it". Dealing with food allergies is a constant in our family life.
-Joanne
www.foodallergyassistant.com
I understand completely. My son has a very serious peanut allergy. We also used to deal with milk and egg allergies.
No, until other parents have a child with PA, they have no idea what it is like to live with all the fears that we do.
I think your comfort zone is very appropriate. I often joke with my husband that if we go out of my comfort zone that I will have a reaction if my son doesn't!!
-Robyn
www.peanutallergykid.com
I hear you sister! I have SEVERE allergies to LOTS of things!!!! I get hives ALL the time! I carry and epi because something I inject causes an anafalactic reaction. This just started in my 20s! I had always had the seasonal allergies the hay fever and such and it has gotten worse! My husband has a unique sort of food allergies that causes his body to completely expel the food or ingredient as acid out his behind! His have gotten better. As a child he had to be on a meat protein formula! to this day he won't drink milk and can't stand the smell of even mildly sour milk! His other big one is corn and corn products. I must make alot of things from scratch any "processed" cheese type sauce is off limits!
wow, Gale. I never even thought to stop to thing about this. You are right, most people probably 'don't get it', but it's not because they don't care, it's most likely that they don't have the knowledge you do. I cannot imagine having to watch things the way you do. I load up my two little girls, go in the grocery store, buy my meat from the deli, bread from the bakery, pick up fruit without a thought, and this is the norm for me. I can't even begin to fathom how much more you have to consider every purchase. I never would have imagined beauty products being an issue. Is this something that your child may grow out of, or will it get better with time? I know nothing about it. You must be one amazing woman to stay on top of all this. I know one thing, that's a lucky kid to have you!
It is sad the severity we have to go to in order to make sure our food is safe for those of us with food allergies to eat. My severest reaction is to artificial sweeteners. They now put it in everything: regular gum, drinks, candy, even children's medicine. I have to read every package or I end up in bed for at least 3 days with severe complicated migraines. Eating out or even at a church fellowship (which I usually just have coffee and eat when I get home) are not things I look forward to. Thanks for the great post!
Gale...thought I would come and check out your blog. I cannot imagine how difficult and frustrating it must be as a mom to find the right foods that don't cause a reaction. I also cannot imagine what your daughter has to go through on the other end. I am grateful that I did not have allergies nor did my son.
I have a question.....and I am sure you have been asked this before but, isn't there anything that can be done to build up her resistance to these allergies? You know like what is done with someone who has poison ivy.....treating like with like.
And speaking of which, have you considered Homeopaethy? Not just the over the counter do-it-yourself but an MD trained in Homeopathy? There are a few of them in the country....we have one here in St. Louis. Allopathic MDs do not understand what they do and so you will not get a good answer or reaction from them if you ask yours about it.
My son is special needs he had seizures for years. I took him to my Homeopathic MD 10 years ago....he no longer has seizures and no longer has to be on medication for them. I used to have cronic sinuitis, no longer. I realize these are not food allergies but they are cronic problems that are no more.
I would never presume to know your situation, feelings or beliefs so I am appologizing if this offends you in any way.
Cindy
There are food allergies in my family, although mine all seem to be dust, hayfever,etc. My heart goes out to ALL of you who suffer this way.
So sorry to hear about how hard this is for you! My oldest daughter has a mystery allergy. She has broken out in hives five times now nad we have no idea why. We have been over everything we can think of, but hers is not life threatening for which I am thankful.
We love bird watching! Once I bought the stalks of millet for birds in a pet store and planted the seed heads. I grew my own millet. Would it be safe for your daughter to handle millet or sunflower seeds that you grew yourself? I realize you would probably not be able to let her handle the first batch of seeds just in case, but perhaps after that it could become a gardening and bird watching project!
Thank you for putting this information out there. Own our family members (some of who are nurses) think we over react...even when we have had several trips to the ER by ambulance.
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