Talking Allergies

I have experienced the opposite problem for years: When food issues come up, I tell people I am allergic to dairy and they all say, "Oh, are you lactose intolerant?" Then I tell them that I have a true milk allergy. It is so aggravating! 1) They don`t understand the issues and terms and 2) Sometimes it feels like no one believes that adults have food allergies; that only children have allergies and they all outgrow them eventually. Even my husband would tell me when eating out to just say I am lactose intolerant and it will be good enough. It took time, but I finally got him to understand why that wouldn`t work.

January
anaphyl.to lamb, allergic to cow`s milk, sulfa, IV iodine, smoke, dogs, cats, rabbits, horses,
asthma, eczema, gluten intolerant

I have a 3 year old autistic son who was tested and is allergic to milk, soy, eggs, and wheat. I have also noticed other foods that have major reactions with him but came up negative on a skin test; gluten, corn, potatoes, citrus, tomatoes, nitrates, artificial colorings/flavorings and preservatives. eating any of these things all create the same effect. severe diarriah, major regression with his autism, scratching his face with his fingernails, banging his head on the floor and walls, seizure like behavior, aggression, stimming, major anxiety and panic attacks, and screaming for hours at a time (he has a deep voice because he has scar tissue on his vocal chords from screaming so much before I discovered these allergies/sensetivities) I consider all of these allergies and believe the ones that didnt show up to be IGG gut allergies. His worst is gluten. He had a reaction and was so sick to rice dream which has "less that %.002 barley gluten" he cant even have it on his skin. Now that I have taken out those foods he is loosing his autistic characteristics and has gone from 25 words to over 200 with sentences, and eye contact and iniciates interaction!

I often find that people, when you say allergic, want to know "how bad is it"? So, I use the term anaphylactic, most folks have heard the term and understand the phrase, however, next question - "so, he needs an Epi-Pen"? Yes, it can be severe enough to need one for sure.
What I have learned though, is that just because a reaction was relatively minor the first or the fifth time, doesn't necessarily mean the next one won't be very severe.
Correct if I am wrong please, but is it not the more you are exposed to your allergen, the worse the body will potentially react over time? Just because the throat didn't close off last time, does not mean it won't the next?

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Son - 8yrs old, eggs, milk, peanuts, passed baked egg and milk challenge
Rast still high for egg and milk so no raw forms
Asthma, Penicillan, Hot/Cold Urticaria (Son8)
Son - 6 yrs old - no allergies or asthma (Son6)

Jesko, it's not usually about continued exposure - most of us couldn't do that if we wanted to.

Allergists say that reaxns are not uniform. They don't necessarily get "progressively" worse, but you can have just hives or a tummy ache one time and full anaphylaxis the next. I always find it worrying when adults tell me they have "mild" food allergies. At this point, we don't really know if there is such a thing.

If it's a true IgE reaxn, you need to be carrying epinephrine since you don't know what will happen if accidentally exposed.

Re using 'anaphylactic' allergies to get across seriousness of condition - I've had mixed results with. e.g. tried that on a server in a resto who replied: "I have no idea what you just said to me". Not everybody has heard of. Sometimes I'll say: "I have very serious allergies that will land in hospital if 'we' get this wrong." e.g. Let's work on getting this right together, you, me and the kitchen.

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Allergic to soy, peanut, shellfish, penicillin

Just to give you one experience on the other side...

I have been diagnosed by 2 medical doctors (not allergists) that I have a dairy allergy, without question, but they will not send me to an allergist. I suspect that it is actually a sensitivity or intolerance, just based on the delayed onset of symptoms. I tell people I do have an allergy because my doctor has told me so and that it actually gets taken seriously, even though I do cheat on occasion and usually pay the price with a migraine among other allergy like symptoms.

I think that there is a lot of misinformation out there and since doctors sometimes cannot explain these things to their patients, people get confused. I have never been told by my doctor that I can possibly have an anaphylactic reaction, and she has also told me that it is a mild allergy, which is opposite of what some pps are saying.

That being said, I do know people that claim to have allergies to dairy and it is only certain brands of dairy , and then seem to think it is the same with me. I cannot even eat chips with milk ingredients listed because of my reaction later in the day, but they can, so they just don't get it. I do understand where you are all coming from, having allergies, asthma and celiac disease to deal with in my family, but I feel the other side needs to also be discussed.

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Hiebs
Me - Allergic to Dogs, Cats, Dairy, Nickle.
DH - Celiac Disease
DS1 - Allergic to Horses, Cats, Dogs - Asthma, Eczema
DS2 - Allergic to Cats - Eczema, Asthma

I suppose that whether you have an intolerance or allergy, you want your friends and family to understand that your health is compromised by a certain food and to respect that it is serious enough that you can't eat the food.

For those whom we depend on to recognise and respond to a potentially life threatening reaction, more depth of understanding is required.

I try to conserve my time and energy and respond as necessary. I may point others in the direction of Allergic Living's website or Alergy Safe Communities. I may simply say,"It's serious, she's had enough reactions that involved face or airway swelling, rapid drop in blood pressure, projectile vomitting, hives over most of her body etc to know that it is very serious. Reactions can vary, at best we are looking at an ambulance ride and 8 hours at the hospital, at worst, death. Either way, it's just not worth it."

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Personally, I think that people need to treat both intolerances/ sensitivities and Allergies as very serious and potentially life threatening only because we never know when "just a sensitivity" may turn into anaphylaxis shock without warning. A friend of mine had this happen to her with a dairy intolerance. She ate cheese one day, and went into shock. My doctor warned me to treat all of my food sensitivities as allergies because he was concerned that I would go into shock because my reactions were so violent. Horseradish and Cinnamon concerned him the most.

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Asthma, SHF, GF, EF, Allergic: Meat, Poultry, Laurel, Mustard, Gras, Mallow, Plantain, Flacourtia, Pine family; ETOH, Vinegars, CremeTartar, Cucumbrs, Fenugrk, Most of Lily, Myrtle, Parsley, Nightshade, Composite familys. Pomgrante, Litchi, Starfrt

It is frustrating to have someone say "I cannot eat that because I am allergic." and then they say "Oh, I'll just get a sore stomach" when in contrast my child would be having the paramedics rush her to the hospital again...

Or the guests we had this summer "My dad can't have cheese because he is allergic." So I start to ask questions to gauge risk of cross-contamination and the dad whispers that he isn't allergic but just doesn't like cheese. I don't think the next few minutes were pretty for him as I explained the severity of true allergies! Wish I knew them well enough to follow up now and find out if they still say he is allergic. It's not surprise that many people don't take the allergies seriously!

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

I agree with you to a point. I also believe that anyone who is not going to take their intolerances seriously, should NEVER call it an allergy. However, I don't think they should call it an intolerance either. Why?
People think that intolerance means that "you should eat it in social settings because it is served, and the reaction is so mild, that no one should really bother with it, let alone take it seriously. To not eat it is rude. Or, we should just pick at the plate, and 'pretend' to eat it." This is foolish because we can get very sick doing so. And, like I said before, we may be one foolish manuever away from anaphylactic shock. A friend of mine almost died because she refused to take her intolerances seriously. She does now take her intolerances seriously.

l also agree that it is very difficult to get anyone to believe that people actually die from allergies. It doesn't help that they keep trying to put the 'number of people with a true allergy' down to a tiny percentage point. I'd rather they used the actual numbers.

Where I'll agree to disagree, is whether some people who take their intolerances seriously, can call it an allergy or not. I never cheat on my intolerances. Ever! And yes, I am getting an Epi, because I have to. Aunt may have Christmas this year, and I might react severely to the cinnamon. Granted, my Doctor did warn me not to cheat on my intolerances, but I wasn't cheating anyways, as I just didn't like the side effects of accidentally eating an intolerance.

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Asthma, SHF, GF, EF, Allergic: Meat, Poultry, Laurel, Mustard, Gras, Mallow, Plantain, Flacourtia, Pine family; ETOH, Vinegars, CremeTartar, Cucumbrs, Fenugrk, Most of Lily, Myrtle, Parsley, Nightshade, Composite familys. Pomgrante, Litchi, Starfrt

That is a very good point that one never knows when the intolerances could turn anaphylactic.

It's the people who call it an allergy yet continue to eat it --- either they are not taking it seriously or it really is not an allergy.

There is a big difference between getting a stomach ache compared to knowing that even a trace could cause anaphylaxis. We have both in my family and managing the intolerance is much easier than the anaphylactic allergies.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

There is a very good point in the new A.L. winter issue. It is from the Family Feud article where Mary Allen (AAIA CEO) is giving some tips on how to communicate with family.


I know she is referring to allergies but I think the same applies to describing any health issue including an intolerance. Every health issue deserves the same respect, but by saying it is something it is not then I think you are selling yourself and your condition short. We all want to educate other to keep us safe and to 'believe' our allergies/intolerances. Others can only learn and begin to be educated about allergies and intolerances if we teach them the facts.

I bet you would be surprised how many people would be concerned and empathetic to your intolerances if you told them just how excruciating the symptoms can be and just even a small injestion can affect your quality of life.

I hope you outgrow some of your intolerances Allergic-Vegitarian. I can see you have an awful lot to cope with, you must be quite a creative cook.

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

I agree that their is a big difference between stomach ache and shock. That's why I tell them I get fake appendicitus attacks because if I eat something with onion in it, thats what happens. They do seem to get that.

I used to describe my physical reactions without being gross about it, but quit because people kept thinking I was being melodramatic. I just gave up. I think it would be more true about them being understanding, if I had only 1 or 2 things I didn't tolerate. However, having things that could become life threatening with exposure when digested or even by just the smell, plus having all these things I can't tolerate at all is just too much for them to believe, especially since the media keeps emphasizing "small percentage" of the population has this or that. They almost never seem to give the figures on how many people have intolerances, or what their reaction can be, etc. However, I think very recently (past 2 - 3 months or so) the Today show did a segment on Allergies and Intolerances. They did mention that if someone is intolerant to a food item, they should not be eating it. I was very happy about that.

I'm hoping that the Lord heals me of my allergies and sensitivities, as I'm very unlikely to outgrow them at 45 years of age. Maybe I'll outgrew them when I become a Senior citizen? Isn't this the "new" adult? Seriously, most of my allergies/intolerances were adult onset, but not all. The Mustard family became an allergy because I couldn't avoid them as a child and didn't know I was suppose to be avoiding them as an adult. I've always reacted to those, but didn't know what was going on. Better doctor, new info, better me.

Creative Cook: I have learned to be more creative in the past year. I've learned how to make hamburger that tastes like hamburger. I learned how to make my own garam masala so I can make Punjabi dishes. I've had to teach myself Italian cooking. In May, my sister and I are going to work out baking and making noodles for me, that include vegetables, pot pies, and various traditional gluten dishes, but made gluten free/ allergy free.

I can't make a good faux chicken yet due to my inability to have celery, celery seed, fenugreek, etc. Celery and tumeric makes an excellent faux chicken when put in tofu, if you're curious. I hope to figure out a substitute in the next couple weeks. I have made a good 'turkey' though. I had that for thanksgiving year. My website that is a WIP, serves to help me create more interesting dishes for me, and others with food allergies and intolerances (not all recipes will I be able to eat). I found that the more research I did on cooking, recipes and what various people could and could not have, the better I became at combining spices and herbs to get the taste I wanted. I'm posting what worked so I have it. Eventually, I might publish my own cookbook too, but thats at least 2 yrs out.

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Asthma, SHF, GF, EF, Allergic: Meat, Poultry, Laurel, Mustard, Gras, Mallow, Plantain, Flacourtia, Pine family; ETOH, Vinegars, CremeTartar, Cucumbrs, Fenugrk, Most of Lily, Myrtle, Parsley, Nightshade, Composite familys. Pomgrante, Litchi, Starfrt

I know this is an old topic but I wanted to add my two cents.
When I was a child my parents searched for years to figure out why I was always sick. They eventually found a doctor in London who diagnosed me with several food allergies. Until I was 12 I was told I had food allergies along with environment, chemical, and animal allergies. We were told by the allergist that it was allergies and never questioned him. When I was 12 that doctor retired and we had to find a new doctor. We were lucky to find one in Mississauga that was willing to take me on. He reviewed my information and told my parents and I that I didn't have allergies I had sensitivities and allergies were life threatening and I would have to carry an epipen if that was true. He tested me and he was right I had food sensitivities not allergies. For 8 years my parents and I thought they were allergies and told everyone they were allergies. We didn't know any better and if it wasn't for the doctor in Mississauga we would still think they were allergies and I wouldn't be able to eat any of those foods. This doctor started me on a rotation diet that I still follow today and I no longer have problems with most of those foods as long as I don't over do it.
I understand why you are all upset about parents calling sensitivities allergies when they are not allergies but perhaps they got bad information. Maybe they really think they are allergies. I always thought only peanuts, nuts, latex, and bees could cause severe reactions and that everything else just made you sick but wouldn't be life threatening. It wasn't until I joined this group and started researching that I realized anything can cause severe reactions. I hope all of you can give these parents the benefit of the doubt and educate them instead of getting upset because they may have been told by a doctor that it was allergies when in fact it's a sensitivity. I still slip up when I explain my diet and say I have a milk allergy even though I know now it is not an allergy just a sensitivity but I also explain that it affects everyone differently and just because I can handle a little milk doesn't mean that someone else can.

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Sarah
Outgrew: Wheat, corn, egg, chicken, to name a few
Sensitive to Milk/Dairy products
Allergic to: Tree nuts, percocet, toradol, environmental allergies and chemical allergies
Migraines caused by scented products, barometric pressure

Hi Sarah, I think most of us get upset due to the confusion it causes over the safety of our children. Say you have 2 parents who's kids are both in the same classroom - both parents saying their child has 'allergies'. The anaphylactic child will have a life threatening reaction if ingests even a trace amount of their allergen yet the other child (with the sensitivity) is able to have trace amounts, doesn't always need to read labels, and for the child with the sensitivity or intolerance the same heightened awareness isn't needed for every single thing they do (craft with food etc.).
This is very confusing to many people and feeds even further misunderstandings of the severity of anaphylactic allergies. Also it creates an unsafe environment for the ana. child as say a teacher would likely put both children in the same category of having 'allergies'. The teacher then might be led to believe that if it (whatever situation) is safe for one child it should then be safe for both...but this is NOT true for an anaphylactic allergic person where STRICT following of rules in every aspect of life is detrimental to avoiding life threatening reactions.
The calling an intolerance or sensitivity an 'allergy' also leads to huge confusion and from others . Those of us with ana. children have VERY strict rules and other parents may be able to be more lax (due to it being a sensitivity.). This leads to many thinking we (parents of anaphylactic children) are over reacting and well, crazy.

So that is why this subject gets us so riled up. Good question!

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

I understand but what I am saying is perhaps those parents were told it was an allergy by the doctor. I was always strict with my so called allergies as a child and did not have any contact with the foods I was told I was allergic to. I know now it was really a sensitivity but at the time we were told it was an allergy and didn't know any different. I'm just trying to offer you another perspective from someone who has had bad information given by a doctor and perhaps those parents who say a child has an allergy really do believe that. Those who know it is a sensitivity and still choose to call it an allergy should change the way they describe it so that those with allergies are not put at a greater risk. I agree that giving wrong information puts children with severe ana allergies at a greater risk because anyone who does not understand the difference will assume the wrong things. This is where education comes in. Parents and teachers need to have the right information but I think all children who have an allergy, sensitivity, or intolerance should not be given that food. It should be up to the parents how the child is treated and if a parent has requested their child not come into contact with a food then it should be followed by any caregiver. I'm asking that when you come across a person telling a teacher or other adult this information that you question and perhaps educate how this information can endanger your child. Perhaps they were given bad information from a doctor as well. If this is not the case then feel free to get mad!

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Sarah
Outgrew: Wheat, corn, egg, chicken, to name a few
Sensitive to Milk/Dairy products
Allergic to: Tree nuts, percocet, toradol, environmental allergies and chemical allergies
Migraines caused by scented products, barometric pressure