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Starting Point for Adults Newly Diagnosed
This is a FAQ just for adults who were recently diagnosed with food allergies, written by adults with allergies. Remember that all of the information and advice here is from
personal experience by normal people...not medical practitioners. It's like talking to another person in a support group, not like talking to your board-certified allergist. This isn't a survey, so please don't send in questions or answers. If you have other questions, join the FAST Mailing List. We'd all love to meet you!
1) Will I outgrow this?
No. These are now a fact of life, like having
diabetes. One can make choices about whether or not the affects are
something we want to deal with, or avoid. If we refuse to face the problem
head-on it will just work into worse reactions and bigger health problems.
Many older people who now realize that they have food allegies or related
diseases like Celiac's Sprue, but were untreated until recently, find
themselves with crippling illnesses like colitis, Crohns' Disease, colon
cancer and more. All the links to developed illnesses is not complete but
we need to recognize that this is a serious immune disorder.
- B. L. Olson
It's inconclusive, and highly individual at best. I think the best way to
handle the situation is assume you will never grow out of your food
allergies, and be thankful if you do. - Kenny Silverman
No...you probably won't outgrow your food allergies. Children can sometimes outgrow theirs, but by the age of eighteen it's pretty unlikely. - Melissa T.
More than likely you won't. So keep a happy face and look at it as a challenge, not a burden. - Jennifer Lillehei
2) Will I get more allergies?
The possibility exists. As one removes
allergens from the diet, sensitivity to other allergens come to to the fore,
especially if one relies too much on a single food that one is sensitive to.
In some cases it is a game of roulette, and one can be perpetually taken
aback when you develop known symptoms but aren't ingesting the allergens you
know about. For example knowing one can tolerate bananas and then eating
four or five of them in one day might cause an "overdose" reaction to either
the banana or to the potassium contained in the banana. It might mean that
your system developed an "new" immuno response to the food, or its
components, or it might simply mean that you can only tolerate the food in
small amounts infrequently.
- B. L. Olson
It is very possible, but again, this is highly individual. While just a
personal belief (not supported by any studies), it is my belief that these
"new" allergies were merely lower-level allergies overshadowed by the
stronger allergies. As you begin to understand your body's reaction to
foods, you often zero-in on the larger offenders. Once these have been
eliminated, you often discover other lower-level allergens that have always
been lurking. I believe that these are not "new" allergies, but you are
only now recognizing them since you are much more in tune with your body.
That said, when you eliminate large food groups, you often tend to eat the
remaining foods more often. This can lead to new allergens.
- Kenny Silverman
You might, but don't worry about that right now. Stay in the present and work on what you can right now. I have developed some new food allergies since my diagnosis, but other than soy none were ones that I wasn't slightly allergic to before. You can get tested every couple of years (or few years) by your allergist for new food allergies, but beware of trusting 0 results on retests if the food is out of your diet. - Melissa T.
You might. Unfortunately, since food allergies really restrict the
number of foods you eat, you tend to eat the things you can often,
too often. Overexposure might lead to you acquiring more allergies.
The rotation diet is helpful for this, but I have found that to
be difficult. I recommend that you do the rotation diet, but if
you can't just be very aware and make sure you don't eat the same things every day. - Jennifer Lillehei
3) My allergist didn't help me know what I can and cannot eat. Any advice?
Research it! Look on the internet, read books, join a list like FAST, talk
to other food-allergic/sensitive people. See a dietician or nutrionist. It
is not the doctor's job to teach you, but it is your responsibility to get
all the information that you can. If you go back to see the same allergist,
take a list of questions and concerns and ask him if you can address them
throughout the visit. He may not know the answer either but can refer you
to someone who might. - B. L. Olson
Pack your bags and keep searching for an allergist that understands food
allergies. While hard to believe, I have found that EVERY allergist and
dermatologist discounted the possibility that my symptoms were food related.
I have now come to realize that ALL my problems are food related. For
example, my food allergies triggered a disease called eosinophilic
gastroenteritis (EG for short). EG, which went untreated, caused 4 ulcers.
The ulcers gave me great stomach pain, which is what landed me in the
hospital the first time... the immediate symptom (stomach pain) was on the
3rd order removed from the offending problem - food allergies.
Currently I am getting food allergy help from a nutritionist/doctor. This
guy doesn't practice regular medicine, he only works with food allergy
problems. Boy was this guy a rare find!
- Kenny Silverman
This seems to be pretty common with allergists -- they just give you a list of your allergens and then set you out into the big world on your own. If your allergist does this, make sure you don't leave until you get some information -- a book recommendation, anything you can get. He may have brochures that he just didn't think to give you. Allergists are pretty busy people, so they may send you out of their offices without taking the time to remember that you don't know anything about food allergies yet. - Melissa T.
Talk to everyone you can who has food allergies to get ideas. Try
things you never have before. It used to be so easy to order a pizza,
grab a frozen dinner, or make something from a box, but now everything
needs to be made from scratch. I have tried and loved sushi, eggplant,
millet, and hummus. I found vegan recipes to be very helpful since
I am allergic to eggs, dairy, meat and poultry and since I am allergic
to wheat, I just substitute a different grain/flour that I can tolerate.
A whole new world of exotic foods and tastes will open you!
- Jennifer Lillehei
4) Will people take this seriously?
Mostly not. Most people have the idea
that "allergies" are something one takes a pill like Claritan or Allegra or
Reactin for and that is the end of it; they don't know how serious food
allergies can be or that there is no treatment other than avoidance. That
is why this disorder is referred to as a hidden disability. People will
scoff "just take the green peppers out then", they will test "surely just
one bit won't hurt you" and they will disbelieve "there must be something
else wrong with you - just eating a kernel of corn couldn't cause you to
stop breathing like that." And all their lack of knowledge, their
disbelief, their uncaring behaviour will hurt you deeply - especially if it
comes from your family and close friends.
- B. L. Olson
Maybe. But such is life. What is more important is that YOU take your
allergies seriously. Your health, well being, and life are at stake.
- Kenny Silverman
No. They will probably think you're a nut-case. But if you find caring people who will let you EXPLAIN your problem, they will probably be more understanding. Mentioning that food allergies are a legitimate disease of the immune system and listed by the ADA (Americans with Disabilities Act) as a disability, you will get more sympathy. I've also noticed that somehow my wearing a Medic Alert bracelet gives me more respect, too! - Melissa T.
No, or they will think you are over-reacting, whining or just plain
lying. But you need to be very firm and very confident. It took
a trip to the emergency room after an anaphylactic reaction for
people at work to take me seriously. It took me having severe asthma
from a family member eating something with dairy in it and me inhaling
it for them to believe it. Now people realize that this is not just
a small inconvenience for me, it is my life we are talking about!
- Jennifer Lillehei
5) Where can I eat out? If I can't, what will I do for social get-togethers?
Many restaurants are willing to disclose their ingredients if
you ask the right person and explain why you need to know. Try to call
ahead and speak with the manager or owner. Certain other restaurants,
usually the fast food chains, print pamphlets of the most common allergens
and which of their foods contain them. In Canada, McDonalds, A&W and
Whitespot have these for sure. Depending on the extent and severity of your
allergies, you may not be able to tolerate even being in a restaurant where
certain of your allergens are prepared. This will also limit your choices.
As for social get-togethers, for the most part you will have to establish
social relationships with others that share your desire to not base
socializing on food. Sometimes you will be able to control what is served
at family get-togethers, and if your allergic reactions are not truely
severe (you can't even inhale the smell of corn cooking for example) then
you will be able to tolerate parties and other things by taking along your
own "safe" foods. Different people react differently.
- B. L. Olson
The best places to eat out are at better restaurants where the chef takes
pride in the food he/she creates. If you go to a "trendy" place that is
pushing the food out as fast as it can, you will likely run into problems.
If you do eat out, call the restaurant earlier in the day when there is a
lull - maybe around 10-11 AM before lunch, or 3-4 PM before dinner. You
should try and talk directly to the chef, and tell him/her of your serious
allergies. The him/her EXACTLY what you want to eat, and how to prepare it.
Dont be afraid to ask them to use clean pots to avoid cross contamination.
After talking to the chef, talk to the hostess and let them know what's up.
When you walk into the restaurant, everything will be set up, and you wont
feel the anxiety of either starving, getting sick, or making a scene trying
to explain your problem. After the meal, PERSONALLY thank the chef.
If you're going to a social occasion, eat before you go. Then nibble what
you can eat at the event. You can also bring your own pre-prepared food,
and ask that it be heated for you (you can also do this at a restaurant). I
also bring a piece of fruit with me just in case... - Kenny Silverman
Because of the severity of my allergies and the risk of cross-contamination (and due to multiple times getting sick from eating out!) I've decided not to eat out. Instead I do other things for social get-togethers. Like playing billiards (at home), karaoke (at home), miniature golf (not at home!), and movies. Another good investment, if you don't have grass allergies, is to go out and purchase some outdoor activities such as frisbee golf or frisbee croquet materials, a croquet set, badminton set, etc. You will have an excuse for inviting people over to your house for some games and some homemade lemonade. Similarly, in the winter-time, you can get supplies for indoor games (ping pong, pool, air-hockey, etc.). - Melissa T.
Eating out is dangerous. You don't have control over what goes into
the food. Even if a restaurant or friend guarantees they will not
make food with your allergens, you cannot be sure. There are so
many hidden sources of foods. For example, people don't realize
that soy sauce has wheat, or that imitation crab is made from wheat.
Not even pharmacists realize that there is lactose in pills.
For socializing, we invite people to our place or we do activities
that are not food related. Saturdays in the afternoon we might meet
friends at the park. For the Superbowl, we had the party at our
place and made all allergen-free foods (and people didn't even notice
... they loved everything). There are lots of ativities that don't include dinner and a movie! - Jennifer Lillehei
6) Will my children have food allergies because I do?
Not necessarily, but
being prepared for the eventuallity makes it easier if it does happen.
Personally, three of my four children have tested positive, and both my
sister and I have food allergies inherited from my father. - B. L. Olson
Allergies tend to be genetic, but in my family, not all my siblings have
them, let alone at the severity that I do.
- Kenny Silverman
It's more likely. My dad has food allergies and passed them along to my brother (only allergic to milk) and me (multiple). My brother and I also have inhalent (asthmatic) and environmental allergies, respectively. - Melissa T.
According to my doctor, because I have them and not my husband,
our kids have a 40% chance of having food allergies. If both my
husband and I had them the chances would increase to 80%. But even
if our kids don't have them, they will have to eat what I eat because
if we had wheat, egg, dairy or my many other allergens in the house,
on their hands, etc., I could go into anaphylactic shock. I am prepared
to raise my kids 100% free of any of my allergens. If they decide
when they are older that they want to go out for pizza, they can,
but they will have to wash hands and face and brush their teeth before they can see mom :) - Jennifer Lillehei
7) Are food allergies real? Or just some "new age" disease?
They are real.
Without getting into a whole lot of scientific/medical stuff, the changes
that humans have made to the food chain, seems to have contributed to a huge
breakdown in the ability of the immune system to recognize normal foods.
People with gluten allergies, for example, can do fairly well with so-called
ancient grains like quinoa. In some senses they are a "new age" disease
because our tampering with the essence of our food (genetic engineering,
chemical contamination, pesticides, whole scale hormone treatments, and
pre-butchering antibiotics) have made it so that a figure quickly
approaching 10% of the population of the US and Canada are rejecting the
"basic" foods from which we have traditionally derived nutrients.
- B. L. Olson
They are 100% real. And they can kill you 100% dead too. Yup, they're real
all right!
- Kenny Silverman
They're real! The traditional medical community accepts them as a legitimate problem, including Chemical and Engineering News, The Merck Medical Journal, and other accepted resources of the traditional medical/scientific community. - Melissa T.
Sometimes I think, "maybe this is really all in my head. Maybe I
am making a big deal out of nothing." But accidental ingestion and
proceeding asthma or anaphylaxis brings me head-long into reality. - Jennifer Lillehei
8) Can I eat the same foods I used to? What can I eat?
This depends
exclusively upon the food allergens for which you test positive. For
example if you have a wheat allergy, you will still be able to enjoy bread,
but you will have to learn to make it from different grains, nuts and seeds.
If you are allergic to a meat like pork, however, it and ALL its derivatives
must be totally removed from the diet and that could mean major changes from
the way you ate in the past. The changes in your diet may mean an
exploration of the foods from other countries where they are more used to
using alternatives that we don't consider normal.
- B. L. Olson
Maybe. Unfortunately, everyone reacts differently. You will need to learn
how your body responds, and just eat what doesn't bother you. If you detect
any symptoms after eating a food, even very low level symptoms, it is your
body's way of telling you something is wrong.
- Kenny Silverman
No, not if you want to get well, and you're allergic to the foods you used to eat regularly. You will need to have a much stricter diet. Find out from your allergist (or food allergy test) what you CAN eat (individual, whole foods), and it will help you in coming up with some of your own dishes. It will also help you determine what food allergy cookbooks might work for your specific diet. - Melissa T.
In my opinion, food allergies are really a blessing. According to
JAMA, 15% of children already have the beginnings of artherosclerosis,
the leading cause of heart disease. The numbers increase almost
exponentially the older people get. Our culture is that of fast
food, convenience shopping and fat and cholesterol. I feel so much
healthier now that I eat no dairy, eggs, etc. I can't eat the stuff
that's bad for me anyway! :) I have learned to love cooking, love
vegetables (a real accomplishment for me) and it is so great. My
husband thinks this is one of the best things that has happened to us and I agree! - Jennifer Lillehei
9) What should I look for when purchasing pre-made foods?
Again, this
depends upon exactly what your allergies are. Since I know more about
gluten, I will stick to that. To avoid gluten in pre-packaged foods, one
must read the label to ensure there is no wheat, rye, spelt, kamut, barley
(including derivatives like malt - yes that means no beer!), no hydrolized
plant protein, no modified (food) starch and so on. For each allergen that
you identify, you must learn all the relatives in that food group and test
your sensitivity to them as well. For example apples and pears are related
and if you are sensitive to apples, you may also react to pears. You can
never hope to remove an allergen if you don't learn as much as you can about
it and its relation to other foods. If you have multiple allergens, there
is a good chance that you might not be able to handle pre-packaged foods at
all.
- B. L. Olson
You really need to become a food detective. If you are allergic to corn,
wheat, and gluten, you will have a hard time finding any foods that do not
contain these allergens in one form or another. This is one area where you
really need to crack the books and learn about how the food industry
prepares and labels foods, as well as the many forms a food can be processed
into.
- Kenny Silverman
Be very careful whenever you purchase something that is pre-made. There is a huge chance for becoming ill from the foods you purchase. For one thing, ingredients masquerade under vague names. Modified food starch can be corn, tapioca, potato, wheat, etc. (basically, it's an unlisted grain). Lactose, lactalbumin and casein are milk-derived. Find a good food allergy book and brush up on this information. As an added "bonus," food allergy manufacturers are not required to list all ingredients in a product! This is mentioned on other sections of the FAST website, but it is worth mentioning here as well. Even if an allergen is not listed on a label, it can still be present. Manufacturers are not to blame -- they are following US FDA regulations that allow for vague labeling. I have had VERY severe reactions to unlabeled ingredients in food, including vomiting about twenty times (literally) and on one occasion throat/breathing difficulties (it doesn't sound as severe as the vomiting, but it was actually more severe). - Melissa T.
Ambiguiity, frustration, etc. You will never be able to just grab
something off the shelf again. You will become an expert on different
ways to say normal foods (i.e. milk, eggs, wheat, soy, etc.). I
didn't know that soy cheese has casein, a milk protein. Pasta is
all made from wheat (so many people say to me: "oh, that's too bad
you can't eat wheat, but at least you can eat pasta" and I have
to tell them that semolina is just another wheat product). Soy and
corn are literally in everything! Learn every possible name for
all of your allergens. Find the hidden sources. Educate yourself!
You are your own best advocate. - Jennifer Lillehei
10) Did I always have these allergies? Or did they just spring up out of nowhere?
In my case they came to the fore during my teen years but no one
recognized them for what they were. My mother just told me I was being
fussy. New research is showing more and more atypical allergy symptoms all
the time and as I study that information I find things that related to
allergies going back into my childhood. For example, many undiagnosed
allergy sufferers have a problem with being overweight. They body has no
other way to deal with the toxins than to store it in fat cells. Others
have a problem with being underweight because their body deals with the
allergens by shunting out of the system as quickly as possible. Ever eat
corn on the cob and have it go right through you in a matter of minutes or
hours? Many behavioural problems are also being related to food allergies;
both ADHD and Autism have been linked to food reactions. - B. L. Olson
I have always had food allergies, but they got worse after I hit my early
30's. My key problem was my parents never told me what food allergies
really were, and they never stopped me from eating the allergens. It was
only when things got really bad did I go back to my roots and start
eliminating foods that I was allergic to as a child.
- Kenny Silverman
I'm in the "group" that believes we have had food allergies our entire lives (or at least from babyhood), and that they gradually worsen over time until they culminate in a huge reaction (only a theory). My parents saw the first signs of my allergies when I was a newborn. Unfortunately, the pediatrician knew nothing about food allergies, so he just diagnosed me as being really crabby. Other reactions over the years were diagnosed by doctors as the flu or a cold, and I repeatedly was clearing my throat or wiping my nose in an upward sweep -- every day of my life. Not to mention the diarrhea and vomiting that were also unexplained! The allergies also culminated in ear infections and bronchitis. As you can see, we can definitely trace my allergies back to childhood. As an added note, some people in the health community want you to believe that food allergies all of a sudden pop up because they want to have a theory that they can repair "something" and cure you. You should know right now that there is no proven cure for legitimate food allergies. - Melissa T.
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