calling it an allergy when it isn\'t....

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My daughter is 4 and is in preschool. There are 3 other PA children in her class of 15. I was originally told that there were quite a few students with various food allergies (wheat, soy, dairy) and that is why the parents had to send in snacks for their own children...and why they couldn't make it a peanut free room anymore.

Well, come to find out, the only true allergies in the class are the peanut allergies. The others are food restrictions because they are autistic, and it is thought that avoidance of certain foods helps with behavior, etc. I'm not criticizing this at all, I know next to nothing about autism, and my question is not about the food avoidance, but with calling it an allergy.

I'm curious what you think about this. Does calling a non-allergy food restriction an allergy undermine the understanding of true food allergies? Does using the label lend more credibility to the food avoidance? Am I way off base by being a bit unsettled by this?

kristen

On Sep 27, 2004

I only know a bit of the autism spread, as I read a bit on it in the last yr.

It seems a gluten free/casein free (GFCF) diet helps with behaviour problems.

Therefore, in that instance, I would call it an allergy (as consuming those products would cause an issue. An issue being 'behaviour related').

I would take that as part of the 'allergy' march, if you will.

Jason

On Sep 27, 2004

Not knowing alot about allergies myself, I do know that "some people" refer to any type of "food intolreances" as an allergy; I think there has been a discussion about that on here before. I do think that tossing the "allergy" term around too loosely will cause it to not be taken so seriously.

However, I do think the are contradicting themselves over the allergy issue. "That's why parents have to send in their own snacks and why they can't make it a peanut free class anymore" .??? So because there is (alleged) food allergies in the class room, they cant make it peanut free? [i]What???[/i].

They cant keep one of the top allergens out of the class because people are allergic to it? I understand what they are "probably" trying to say, that b/c parents have to send in their own snacks, they (the school) cant make it a PN free classroom, which we all know is not true.

It would seem that b/c of the allergies (and I guess this is the case everywhere) that it would be easier to make it a PN free classroom.

I know it isnt always feasbile to make classrooms PN free, but it seems like they are just trying to take the easy way out.

On Sep 27, 2004

I do not think this calling of sensitivities as allergies undermines peanut allergy. I do, however, think it would be unacceptable for me to have my ds in a non-peanut free room. My ds is very sensitive to many foods he cannot eat, but they won't kill him like a peanut may. It is important to me that he not eat the foods he is sensitive to as I'm sure it is important for these parents. But, why do they feel the need to include nuts into the bringing your own snack? I do refer to my son's sensitivities as allergies because he simply cannot eat them without major behaviour problems. I don't think I'm making his peanut allergy seem less severe by doing so. Hopefully something can be worked out here so your dc is safe at school.

Linda

[This message has been edited by Dunpun (edited September 27, 2004).]

On Sep 27, 2004

It's true that many children with autism spectrum disorders are helped enormously by dietary restrictions--it can help their behavior as well as their health (as many of these children have problems with recurrent infections, digestive disorders, etc.). There is actually some debate as to weather or not this constitutes an allergy--it's a bit more than an intolerance, as the foods affect more than just digestion--but it's clearly not a traditional allergy where the person has an IgE response to the food. It may, however, be an IgG or an IgA response--something that is less immediately noticeable than an IgE response but is truly an immune response and therefore an allergy. So calling it an allergy might be accurate, although the research hasn't been done to prove this.

But the bigger question is one of general understanding. People know what allergies are, they know that exposure to allergens cause a physical response, and they respect that. People are more skeptical of foods affecting behavior, so calling something that may technically NOT be an allergy an allergy for the sake of understanding is common and not necessarily detrimental to those who really do have allergies in this case (I have more of a problem with people who are lactose intolerant calling it a dairy allergy).

As an example: I have a sister with a very rare disease called xerodermapigmentosum (XP) [url="http://www.xps.org/."]http://www.xps.org/.[/url] Simply put, she is unable to tolerate UV light; the larger picture is that she has a degenerative nervous system disorder that will probably eventually kill her. The sunlight thing, as it turns out, is just a small part of it. But when we were kids and had to explain my sister's disease, we told people that she was allergic to the sun. She wasn't really, not by any standards, but it made adults and children alike understand her restrictions--no playing outside before sunset, no uncovered UV lights in the classroom, etc. It was a simple explanation for a complex disease. Autism is a lot like that, especially since no one really knows what causes it and why dietary changes can help some people but not others, so when faced with the daunting task of trying to explain why your child can't eat certain things, it's a lot easier to go with the allergy explanation.

I hope this helps!

Sarah

(edited to correct spelling)

[This message has been edited by Sarahfran (edited September 30, 2004).]

On Sep 27, 2004

Quote:

Originally posted by new2PA: [b]However, I do think the are contradicting themselves over the allergy issue. "That's why parents have to send in their own snacks and why they can't make it a peanut free class anymore" .??? So because there is (alleged) food allergies in the class room, they cant make it peanut free? [i]What???[/i].

They cant keep one of the top allergens out of the class because people are allergic to it? I understand what they are "probably" trying to say, that b/c parents have to send in their own snacks, they (the school) cant make it a PN free classroom, which we all know is not true.

I know it isnt always feasbile to make classrooms PN free, but it seems like they are just trying to take the easy way out. [/b]

What they actually said was that because of the multiple allergies, they couldn't ban peanut butter from the classroom because that's what some of the kids can only eat.

I don't like it, but the teachers are very careful when one of the kids brings in peanut butter. They're going to send home a class list, and my husband wants to call each of the parents to request they don't send peanut butter in.

kristen

On Sep 27, 2004

Thanks for the perspective...it was just something that kept swirling around my head, and I was curious about others' opinions on the matter.

kristen [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Sep 27, 2004

this actually bugs me. There's a lady on one of my weight watcher lists that told a restaurant she was allergic to oil so they wouldn't put it on her food.

------------------ ============== [b]~Gale~[/b]

On Sep 27, 2004

Quote:

Originally posted by Sarahfran: [b] (I have more of a problem with people who are lactose intolerate calling it a dairy allergy).

Sarah[/b]

If I had a dollar for every time someone told me about Lactaid when discussing my son's milk allergy, I could be a very rich woman. [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img]

On Sep 27, 2004

My neice was lactose intolerant and the line was always that she was alleric to milk. It was easy for her to comprehend as a young child, easy to say, and taken very seriously by all. I would never question it since consuming milk did indeed make her very ill. She was also truly allergic to chocolate. Has since outgrown both. Ihope the outgrowing is in dd's genes!

I think if it keeps others from feeding a child the wrong food, use whatever language is needed. Many allergies are not anaphylactic and are rather minor when comared with some intolerances. It is splitting hairs in some ways. becca

On Sep 27, 2004

I have never had an allergy test, but I do consider that I have many allergies... chocolate, processed meat and aged cheese cause instant severe migraines (even trace amounts)... mushrooms give me a rash on my cheeks, and eating fish makes me violently ill (probably a true allergy).

Even though I consider these my allergies, when speaking to others I usually say, "I cannot have ________" but occasionally at restaurants I say that I have allergies, because I really don't want to have an adverse reaction and they don't take me seriously otherwise. The other day I had a waitress who refused to check if the roast beef had nitrite (the perservative used in processed meats)... so I had to order a salad. Guess where I won't be eating again anytime soon? (PA son was not with me, I was with my co-workers).

I understand where you are coming from though. There are alot of people who don't understand PA because their idea of an allergy is a runny nose and congestion (give some Benadryl and all should be fine). That is why I always use the term "life threatening allergy" when speaking of my son's PA. It seems to get people's attention more than the word "severe". Severe to them might mean stomach aches or hives.

Peanut butter is NEVER all that a child can eat, even if it is all that child WANTS to eat. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Try carrot sticks or an apple, for goodness sakes. I hope you get it worked out. I would be so nervous if my son was around peanut butter continually. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

On Sep 29, 2004

I'm one of the ones that think misusing the word allergy seriously undermines the gravity of the condition. Allergy is a specific cascade of physical events that can result, ultimately, in swift death. It incredibly trivializes the condition to lump it together with intolerances and behavioral responses that pose no threat to life.

What I've hated most is trying to train a caregiver on the epipen and have them or another attendee chime in with something like "Oh, I have a nephew allergic to sugar -- it really makes him hyper!" I feel as if I have completely wasted my time and breath and they are not going to get it, ever, because someone co-opted the term for a completely different, less serious condition.

Kay

On Sep 29, 2004

I agree with everything Kay B just said. To me a food allergy means an immune mediated reaction that can lead to anaphylaxis. I also think it undermines the seriousness when people say someone is allergic when they are actually intolerant. I am lactose intolerant and on that rare occasion that I eat a scoop or two of ice cream or drink a milk shake it can be really uncomfortable. One time I had a huge milk shake, had a Lactaid first (what you take if you are lactose intolerant but are about to have a milk product), but apparently the lactose load was so high that the lactaid did not work. Anyhow, it was really painful, but it is not an allergy. I spent part of a day in bed due to severe abdominal cramps, but I didn`t have to see a doctor, nor was there anything a doctor could have done. It seems like people sometimes want to jump on the bandwagon calling something an allergy when it isn`t. If people are going to say their child is "allergic" to sugar, then I feel that others may not take it as seriously when I say dd is allergic to milk and peanuts.

On Sep 30, 2004

The calling of lactose intolerance as an allergy drives both me and my daughter nuts. She has an actual (anaphylactic) milk allergy and people just ASSUME that it means she is just lactose intolerant, and they say dumb things like can you have cheese? It drives her crazy to explain the differences between lactose intolerance and an actual milk allergy. I think calling an intolerance an allergy makes people take an actual allergy a lot less seriously.

-Kay

On Sep 30, 2004

In the past couple of days I'm changing my mind slowly about this....I have a mother at school who approached me about ds's allergies, wondering if she could make some cookies for the class, explaining what was in them. My ds will not eat them anyway, but found it nice that she was trying. When I was talking about the milk allergy (ds has not been anaphlatic to milk, but he has a true allergy and is off all dairy), the mother went on about she knows how hard it is because she cannot have lactose, how it is so terrible. I understand that it is not nice at all and avoidance is necessary, but she was advising me on all these products my ds could eat. He cannot eat any of these because they have dairy. No, they are lactose free she would say. Believe me, she said, I know what has dairy in it. I was banging my head against a wall. "He is not lactose intolerant" I told her, there is a big difference. She went home at noon, came back and told me how her margarine has no lactose, so he could use that. It was very frustrating and I know she is trying to help, but I did she how the word allergy there was a bit undermining. I am still learning what is dairy and what is not as well as hidden sources. There seem to be many lactose intolerant people and when you try to explain the milk allergy, they cut you off with "I know how it is" Frustrating.

Have a great day Linda

On Sep 30, 2004

I'm confused about pollen allergies. Are they true allergies? For several years I got shots for them. My doctor certainly looks upon it as an allergy. Must an allergy cause a life-threatening situation in order to be considered a genuine allergy?

On Sep 30, 2004

Quote:

Originally posted by Elisabeth: [b]I'm confused about pollen allergies. Are they true allergies? For several years I got shots for them. My doctor certainly looks upon it as an allergy. Must an allergy cause a life-threatening situation in order to be considered a genuine allergy?[/b]

pollen allergies are true allergies...they are a histimine reaction. I don't know how they differ from food allergies, though, as to why they don't escalate into life threatening reactions.

kristen [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Sep 30, 2004

I've actually found it pretty easy to explain the difference between lactose intolerance and a dairy allergy in a way that people understand in this day of carb-controlled diets. Lactose intolerant people are unable to tolerate the sugar (carbohydrate) in dairy products, while people with true dairy allergies react to the protein in dairy. Maybe it would be more accurate to say that they have a casein allergy, but you can't say that in general speech because then almost no one would understand. But when people ask, I explain the difference between the sugar and the protein and then they get it.

BTW, back to the original poster's question, children with autism who are on controlled diets are indeed avoiding caesin and gluten--it's the proteins that seem to affect their behavior, another reason I'm comforable calling it a possible allergy and more than an intolerance.

Sarah

On Sep 30, 2004

Quote:

Originally posted by Kay B: [b]I'm one of the ones that think misusing the word allergy seriously undermines the gravity of the condition. Allergy is a specific cascade of physical events that can result, ultimately, in swift death. It incredibly trivializes the condition to lump it together with intolerances and behavioral responses that pose no threat to life.

Kay[/b]

My son has multiple allergies, some of them life threatening and many of them are not. They are all true allergies. Unfortunately, allergies does cover a whole range of responses, from a runny nose to anaphylaxis. My son has outgrown his milk allergy (not intolerance) and yet his only reaction to milk was diarreah and cramping (very similar to lactose intolerance).

The word allergy is very broad. When people hear the word they will invoke very different ideas of what an allergic reaction is. Reactions CAN range from a runny nose to anaphylaxis with varying reactions between.

I think that it is important to use words like "life threatening" even though it seems so gloomy. It is the only way I have found to get my point across. "YES, he certainly could die."

Anaphylaxis, however, IS a term that speaks of a life threatening reaction. Perhaps there needs to be more education about anaphylaxis so that people can recognize the difference easily.

Just my two cents.

On Oct 1, 2004

I also think people may not realize that "intolerances" which are not allergies can also be very life threatening. Allergy does not have a monopoly on the fatal front. I have known several wheat gluten intolerant individuals hospitalized with severe intestinal bleeds as well as those with lactose intolerance. "just" diarrhea and cramping can be life threatening as well as anaphylaxis. So, personally, I respect however a person chooses to say it if they are trying to convey, "Don't feed my child this food." becca

On Oct 1, 2004

Ditto with Becca

I guess I dont see why it matters what you call it... the kids can't have the food. I imagine those parents of the kids with autism take their "allergies" just as seriously as you do. Believe me I understand how mind numbing it can be to explain why again we cant make pine cone bird feeders with peanut butter at play group even if my son doesnt use peanut butter. Or explain why he cant have ANY milk products or soy for that matter but I dont really see why it being called an allergy or an intolerence matters.. both can have very serious consequences.

------------------ Lalow James 2yrs NKA Ben 17 months PA,MA,possible EA, and SA

On Oct 1, 2004

Good points becca and lalow!

Quote:

Originally posted by lalow: [b]I guess I dont see why it matters what you call it... the kids can't have the food. I imagine those parents of the kids with autism take their "allergies" just as seriously as you do....

I dont really see why it being called an allergy or an intolerence matters.. both can have very serious consequences.[/b]

Very true!

I take my *intolerances* very seriously as well. I can't afford to get a migraine by eating my forbidden foods. My children need me to be in full capacity. A migraine puts me completely out of commission for at least a day. I know that isn't life threatening... but I take it seriously.

And myself having a child with such a range of allergies (from runny nose reactions to anaphylaxis), allergy to me is just a word. It is up to me to explain to those around my son the seriousness of his anaphylactic allergies. But it is also very important to me that he also avoid those allergens that aren't as serious. His other allergens CAN aggravate his asthma and that itself can be a serious health issue (not to mention putting him at higher risk for a severe reaction to peanuts, nuts, or eggs).

Take care,

On Oct 2, 2004

There is a thread in the Media forum started by StaceyK. She posted a link to an article there as well about this topic.

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum8/HTML/000889.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum8/HTML/000889.html[/url]

Take care,

On Oct 3, 2004

Quote:

[b] pollen allergies are true allergies...they are a histimine reaction. I don't know how they differ from food allergies, though, as to why they don't escalate into life threatening reactions.

[/b]

Anything that affects my cubs ability to breathe I consider life-threatening.

Sometimes, it's difficult to distinguish whether his respiratory symptoms are a related his food allergy, or something else.

Either way, when he can't breathe, he can't breathe. He's a compensator. He keeps up, keeps up, keeps up, and then suddenly..............doesn't.

Although he has had *sudden* "Asthma attacks*. If I *had* to pick a particular type of *attack*, don't know which one I'd pick. It tends to be a slow insideous type of thing, and even more frightening, is that both my cubs tend not to recognize or acknowledge pain, difficulty breathing, or other discomfort for what it is. Although I'm *sure* they feel it (pain/discomfort), (since *I* do as well), and their activity changes to work around it.

I mean, they compensate. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] This comming from someone who herself *knows what pain feels like*, but still managed to herniate multiple discs before realizing pain is a signal to re-evaluate what one is doing.

Ditto to Becca, lalow, Smartalyk.........

general disclaimer: I am not offering advice in any manner or form.

[This message has been edited by MommaBear (edited October 03, 2004).]

On Oct 4, 2004

The second post talked about a gluten-free diet and I wanted to let everyone know a little more about it. I have Celics. My daugther has the peanut allergy in the family. She has been tested for Celiacs and is negative for now, I hope she never gets the Celiacs and out grows the peanut allergy (along with everyone else outgrowing it on this site).

Technically Celiacs disease is a disease not an allergy. You can be allergic to wheat and NOT have Celiacs. Maintaining a gluten-free diet for life is the only way to manage the Celiac disease. Ingestion of gluten causes the villie in the intestine to lay flat and not absorb anything which means if untreated you may waste away and die. Myself, I spent over 4 years with active celiac related problems, lost over 50 lbs while eating everything in site trying to maintain some weight, had a gallbladder removed, endured numerous tests, to finally find a doctor who would do the blood test and endoscopy and got me the diagnosis of Celiacs. This is not an uncommon story.

I for one use the term "allergy" when describing what Gluten-free means to restaurants managers and servers for two reasons. 1. No one knows or cares what Gluten-free means (no wheat, rye, barley, or oats). The smallest crumb of gluten and I will be sick for over a week and it will take several weeks to get the villie to grow back. When pregnant it is not good to not get any nutrients for any period of time 2. Businesses are scared of a lawsuit and all restaurants have some knowledge of how severe an allergy can be. And since we have the peanut allergy at the same table, it tends to make more sense to call both an allergy.

Much like the peanut allergy, celiacs is a life time disease and touch, inhale, or ingestion of gluten will make me very sick. Unlike the peanut allergy a reaction will not kill me right away. This means I have to check every products in the house from foods, medicines, cleaners, etc. for both peanut and gluten. It makes for an interesting house.

The gluten-free diet has been found to be extremely helpful for autistic children and those with ADD or ADHD. I don't know exactly why it helps, but I know celiac children who ingest gluten by accident have typical reactions of irritability and other behavioral problems along with the noromal vommiting, diareah, skin sensitivity, skin rashes (DH), etc.

Most people mean well, but don't understand the nature or severity of someone else's disease until they have to experience it personally. I had no idea the problems the people with peanut allergies faced everyday before my daugthers allergy. And now, I too am terrified of the day she goes to elementary school. I have had enough of a battle with the daycare.

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