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Post by colormist on May 12, 2011 7:56:06 GMT -5
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Post by Tammy on May 12, 2011 18:14:19 GMT -5
I know how you feel. I have to bite my tongue at work all the time. There is a man there that has a 5 yr old grandson who has a severe allergy to peanuts. Only peanuts. Now I know how serious this can be, but give me a break. ONLY peanuts.
He has been selling tickets for raffles, they are having a HUGE fundraiser with all kinds of things going on. All because the kid can't have peanuts.
And it's the story with it. The big sympathy ploy. This poor little boy can't go to his friends birthday parties because there might be peanuts there......... He can't go and spend the night at a friends house......... He can't be out of his mothers eye........ The whole family can't attend wedding receptions because they almost always have peanuts there.....................They didn't put him in daycare because they can't trust other kids...................
It's just un-believable all the things that poor little boy can't do.
And I just sit there and listen. Every now and then I spout off - I just can't help myself. lol.
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kim55
Junior Member
Posts: 77
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Post by kim55 on May 13, 2011 1:26:17 GMT -5
But at least we can eat stuff that tastes good. That gluten-free stuff tastes lousy and the texture is all wrong, at least the stuff we found was during the time our household was dealing with my daughter's wheat allergy. I like plain rice cakes, but I'd hate to have to eat them all the time. We can have pasta! I can eat Cuban bread! We can have pancakes and cheese straws and all that stuff that makes me fat! (Uh, maybe that's not so good after all.) And most of the time, our taste buds alert us when something isn't good for us, which you have to admit is a plus.
Plus, the gluten-free stuff that imitates real food is expensive. I remember buying a package of frozen muffins for my daughter that was $7. Since I don't eat muffins, my cost of muffins is $0. Big advantage there. <g>
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kim55
Junior Member
Posts: 77
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Post by kim55 on May 13, 2011 9:15:04 GMT -5
This morning the Atlanta Journal-Constitution had an article about specialty bakeries that cater to people with food intolerances. It said that one bakery even has foods for people avoiding sugar; it uses agave nectar instead. When will they ever learn?
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Post by colormist on May 16, 2011 10:44:53 GMT -5
Oh Kim, that's just depressing. You get your hopes all up, then it comes crashing back down. I'm like that when I see a new snack or pre-seasoned pasta/rice on a shelf. Then I curse the company and all their "chefs". And, sadly my husband has Celiac's, so I try to find him foods when I shop. My dog also has a wheat allergy. I'm very used to looking for wheat ingredients as well as all the fructose ones.
Tammy, this might be out of spite, but I carry peanuts with me all the time. I mean, honestly, they have the big bold "NUTS" written on a food label so very clearly that all can easily see. Do they have to stand there in the grocery for two hours reading label after label--even if they just read the same label a week ago? I want to know how these children with such serious nut allergies manage to function as adults. Do the allergies subside as they get older? I mean, they clearly can't go into any food-related place without dying, so... ??
It just confuses me.
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Post by Tammy on May 16, 2011 11:02:46 GMT -5
I know how this poor poor little boy is going to function. That is what all the fund raising is for. They are raising money for him to have a "peanut dog". A service dog. This is the only way this kid is going to be allowed to go to school or anywhere outside his own home. This dog is going to be trained to smell peanuts. This dog will never be away from the kids side. The dog won't let him eat anything with peanuts. They are trying to raise $10,000 for the dog to be trained.
My cousin has a severe peanut allergy. Over the years she has learned to smell peanuts all by herself. She knows right away when one of us slips up and brings peanutbutter cookies or fudge by mistake. I just can't understand how she survived all on her own all these years...
Wish someone would raise $10,000 so we could read labels easier...
Just unbelievable to me.......
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Post by Tammy on May 16, 2011 11:13:43 GMT -5
I did make myself feel a little better by being spiteful. lol.
I ALWAYS buy any raffle tickets from anyone who sells them at work. It's just what we do. So I bought $5 in 50/50 tickets before I even knew what they were for. I never win anyway, I just donate my 5 bucks. After I did, then I started hearing the stories. Of course, I was constantly saying "ONLY peanuts??" My friends would look at me, realize what I was saying, and get it. Others just thought I was nuts..
More times than not, when the 50/50's are over and the winner is drawn, they give their 50% back to the charity. Surprise Surprise! I won!!!!! My half was $750! I couldn't believe it. And guess what??? First time ever I did NOT give my half back. Oh what a terrible person I am. ;D
My new computer is wonderful. hehehe.
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Post by julienc on May 16, 2011 11:43:42 GMT -5
I'm pretty certain that the peanut allergies can lessen with time. Duke has been doing some ground-breaking research with peanut exposure. Children who normally would have keeled over at the whiff of peanuts are now being treated to the point where they can consume them in small amounts. Tammy, your coworker should look into this!!! LOL, my husband is the equivalent of the peanut dog. He screens my food for me.  |
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Post by colormist on May 16, 2011 21:47:00 GMT -5
Woohoo new computer! Congrats! Everything I've been reading about peanut allergy seems to point in the direction that children aren't exposed to peanuts early on so they get a crazy allergic reaction when they finally do encounter them. The treatment also seems to suggest that they expose kids to small amounts of peanuts (really, really, really small) and slowly build up their immunity to them. I often wonder if they could have avoided all this chaos if someone had brought a peanut butter sandwich into the hospital when they met the baby. LOL 10,000 to train a dog. Seriously. If I'm going to spend that much to train a dog, it's going to be to find truffles. Return on Investment. I feel like these poor people are being horribly scammed. Horribly, horribly scammed. EDIT: Wait. I wonder how many dogs I could train in a year to sniff out peanuts... This is my new career opportunity!  |
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Post by meaniejean on May 17, 2011 19:25:29 GMT -5
Oh my gosh you gals kill me! Laughing my butt off over here ; )
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elilly
Junior Member
Posts: 96 
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Post by elilly on May 21, 2011 7:13:15 GMT -5
I know how you feel. I have to bite my tongue at work all the time. There is a man there that has a 5 yr old grandson who has a severe allergy to peanuts. Only peanuts. Now I know how serious this can be, but give me a break. ONLY peanuts. He has been selling tickets for raffles, they are having a HUGE fundraiser with all kinds of things going on. All because the kid can't have peanuts. And it's the story with it. The big sympathy ploy. This poor little boy can't go to his friends birthday parties because there might be peanuts there......... He can't go and spend the night at a friends house......... He can't be out of his mothers eye........ The whole family can't attend wedding receptions because they almost always have peanuts there.....................They didn't put him in daycare because they can't trust other kids................... It's just un-believable all the things that poor little boy can't do. And I just sit there and listen. Every now and then I spout off - I just can't help myself. lol. There is a huge difference in what we are dealing with and immediate, life threatening food allergies. I understand that we deal with a lot of diet management (my DS is gluten and dairy free, allergic to soy, and also has HFI) but none of the HFI part is immediately life threatening. We don't get ill from what others around us do, allergic people can if they are contact reactive or if the allergic proteins are in the air. I believe that you are trivializing a very severe condition. |
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Post by allergy hfi mom on May 25, 2011 13:25:19 GMT -5
It is kind of funny you mention it because my son was diagnosed recently with multiple allergies including nut allergy. And it is indeed very different from what you and I have. I also always thought well you just have to avoid peanuts so big deal. But the problem is that unlike HFI, nut allergies do not seem to be dose dependent. That is, even a tiny amount of nut can send the allergic person into shock. So you don't just have to avoid peanuts. You have to avoid anything made in a factory that also makes peanut-containing products. So, basically you have to avoid almost all candy, even though metabolically you can tolerate candy. You also have to avoid many snacks, if they were made in a facility that also makes (for example) peanut butter crackers. And, if you are exposed to nuts, you may go into shock and even if you use the EpiPen you can die. It is way more stressful for me to manage my child's nut allergy than it ever was to be HFI.
I do agree that there is an underlying problem here. I hear lots of allergy moms say their child feels so awful when he can't have the birthday cake and that schools should eliminate food parties so their child doesn't have to feel sad that he/she can't eat the identical food served at the party, and that people should stop giving out Halloween candy and give out non-food treats instead. And I think to myself that this is like trying to get the waves to turn back at our command. Instead of expecting other people to stop eating tasty food, we should be asking food companies to make food that is more inclusive and we (people with food restrictions) should be joining together with each other to create a larger market so companies are motivated to meet our various needs.
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Post by hfimomof3 on May 25, 2011 13:30:10 GMT -5
hey there, that last message was me. I forgot my passwrod so I had to login as a guest.
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Post by ukbill on May 26, 2011 8:23:03 GMT -5
That gets my Vote hfimomof3.
Unless we are totally stupid or one of the ultra sensitive HFI'ers as HFI adults we should not eat enough sugar to make us ill to life threatening levels.
Avoiding sweet tasting foods is easy compared to absolutely anything you eat potentially killing you in a few minutes without warning.
We should be pulling together as a global group to force manufactures to stop adulterating the food we eat rather than snapping at each others attempts to get help.
I for one if I had an ill child would move haven and Hell to get them help from whatever area I could.
I wish we could get some global recognition (publicity) to our specific condition to the level of Peanut allergy has done.
The incidence of HFi is actually not too different to the severe form of Peanut allergy I am assuming (1 in 20,000) ?
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Post by Tammy on May 26, 2011 9:39:26 GMT -5
I was in no way belittling the seriousness of a peanut allergy. Like I stated above, I know how serious it can be. There is some in my own family.
I also work with it. I work for ConAgra Foods and the one building makes both Andy Capp fries, and Franklin Crunch N Munch, which contains peanuts. If you are working in that building, and you have to go into the non-peanut side, there are special shoe brushes / air hoses you have to use to even clean the bottom of your soles. Then go through an "air-lock" type thing before getting in the other side. We have had many many safety lectures / meetings / trainings on just how serious it is.
With that said.................
Come on you guys. You are totally missing the gripe here. Lighten up a little. ;D
And now..........I have to go get ready for work so I can hear just how horrible that poor poor little boy has it. I'm starting to hate that kid..lol.
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Post by charlie on May 26, 2011 16:07:14 GMT -5
I'm with Tammy here. It took months in fact years for me to set up procedures for Megs to get xtra milk and hot food which I have to deliver daily at lunch time so she eats properly. but a new kid started this year with multiple allergies including a peanut one and yes ok his reaction is instant and needs epipen treatment and from day one systems were set up for him, help at lunch, supervision, oh yes and we all got a letter saying no nuts to come into school at all. Well, at least he can eat a bloody banana!!!!!!!!
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Post by ukbill on May 26, 2011 20:16:28 GMT -5
Like I said we really need some Global publicity to get our condition known. In the UK there are about 14 (last time I checked) known diagnosed people with HFI. The incidence of HIF is something like 1 in 20,000 people. Therefore in the UK (population around 60 million) there should be some 3,000 of us (if I've done my maths right.. it is late here as I type so apologies if I got it wrong). So in the UK there are approximately 2,900+ people who are living and possibly dying as a result of undiagnosed HFI In the USA you have 250 million people so you could have over 10,000 HFI people. how many members do we have.. 150 ish? Do none of us know anyone in the Media that could look at these figures and get us some publicity.. even if we don't get any changes to the food industry at least we are then able to offer help and assistance to people with HFI and their carers. Sorry I seem to be unable to "lighten up" tonight. Hopefully normal service will be resumed tomorrow |
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Post by hfimomof3 on May 27, 2011 11:49:31 GMT -5
I agree with you, that it is a travesty that there are systems in place to help you if you have peanut allergy (and, to some extent, for other allergies) or if you are diabetic etc, but if you are HFI then there is no system to help you and usually people have never even heard of it.
I agree that it is unfair that there are companies that focus on making peanut-free foods and on other foods that are allergen-free, but that if you have HFI then people tell you to shop in the diabetic section (which, it turns out, is full of products that are LOADED with sugar).
It irks me that there is so little clear advice available to help people like you and me.
I think part of the problem is that the solutions to many of these problems are self-funded. If you have food allergies, you go to FAAN and donate money and they use that money to fund research that helps your cause. They have a board that puts together a team of people to read grants and decide what gets funded. If you are one of the 150 people on this board with HFI (wow, are there that many? That is amazing), then if each person donates $100 then that gives us a whopping $15000 with which to fund research that benefits us!!! As an example of what this means, I was just reading on the kidswithfoodallergies board that it takes $100 000 to $200 000 to do a research study that shows that a particular allergy is frequent enough in the US population to merit inclusion on the list of ingredients that food companies have to disclose in their ingredient labels.
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Post by hfimomof3 on May 27, 2011 12:11:05 GMT -5
I am not sure that the rest of the world wants to know about our HFI. I think if we tried to publicise it and say 1 in 10 000 people has this condition! Then they woudl say, oh that is hardly anyone and they woudl turn back to their newspaper. So one question woudl be who can we join up with as a common cause so that instead of 1 in 10 000, we could say 1 in 100 people has THIS [other thing]. One option is failure to thrive. That would actually be a good public service if we joined up with other conditions that have FTT as a hallmark. Because surely there are LOTS of people who know a baby who has FTT. And, IMO, parents of bbaies with FTT seem to really struggle with how they are treated by physicians and friends and family (ie as if they are purposely underfeeding the baby).
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kim55
Junior Member
Posts: 77
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Post by kim55 on May 27, 2011 19:45:03 GMT -5
Maybe one solution would be to get someone to do a short-term study on a few FTT cases to see if eliminating fructose would help. If they could work with a small number of cases, but show that even one of those cases was improved by eliminating fructose, it would not be statistically significant, but it could lead to a larger study to determine what percentage of FTT cases are fructose-related. Then doctors and the general public might start paying attention to HFI. Wishful thinking on my part, of course.
Hmmm, how about a letter-writing campaign to the formula manufacturers to develop a baby formula that is fructose- and sucrose-free? Or if they already have one, to label it as such? Or get fructose-free included in the lists of breastfeeding advantages?
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