So, I saw a tweet the other day referencing the below Mount Sinai info about labeling and using "common sense". It makes me a bit uncomfortable. I know ... who am I (just a mom) to question the experts (I seem to be doing a lot of that lately :hiding: ) ... but the other part of me thinks its important to try and explain my concerns.
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Related top-level USA food labeling thread:
Food Allergen Labeling (http://foodallergysupport.olicentral.com/index.php/topic,9421.0.html)
Tweeted by @NutFreeWok
https://www.facebook.com/permalink.php?story_fbid=1516028438644631&id=1380759788838164 (https://www.facebook.com/permalink.php?story_fbid=1516028438644631&id=1380759788838164)
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Mount Sinai Jaffe Food Allergy Institute
QuoteFor those patients who need to avoid foods that are not considered major allergens such as sesame or mustard, these may be hidden in a vague ingredient term. Using common sense in these situations is advised. For example, it is unlikely that a cherry lollipop will contain sesame or mustard flavoring; however, caution is warranted when purchasing savory items such as salad dressings, marinades or prepared foods that may have these ingredients as "secret" flavoring agents.
Bold/Blue mine.
Typical reminder / disclaimer - I am just a mom. I am not a medical or legal expert. Talk with your own allergist if you have questions about info in this thread.
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Here are a few links with basic food labeling info for those who are just beginning to learn about food allergen labeling.
http://allergicliving.com/2014/01/06/how-to-read-a-label-when-you-have-food-allergies/ (http://allergicliving.com/2014/01/06/how-to-read-a-label-when-you-have-food-allergies/)
http://www.kidswithfoodallergies.org/resourcetopic.php?topic=pfood-safety-labeling (http://www.kidswithfoodallergies.org/resourcetopic.php?topic=pfood-safety-labeling)
To explain my concerns about using "common sense" for non-top8 label reading, I thought a good place to start would be to look at the state of labeling pre-FALCPA because that's basically the situation us non-top8 folks are currently in.
"Common sense" sounds a lot easier than it really is. Allergenic proteins can turn up in products that you would never think they would. "Common sense" was not the advice given to those dealing with the big-8 allergens at that time. The "common sense" approach is likely to sometimes fail.
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FDA
Public Meeting On: The Challenge of Labeling Food Allergens
8/13/2001
http://www.fda.gov/ohrms/dockets/dockets/00p_1322/tr00001_01.pdf (http://www.fda.gov/ohrms/dockets/dockets/00p_1322/tr00001_01.pdf)
http://www.fda.gov/ohrms/dockets/dockets/00p_1322/tr00001_02.pdf (http://www.fda.gov/ohrms/dockets/dockets/00p_1322/tr00001_02.pdf)
http://www.fda.gov/ohrms/dockets/dockets/00p_1322/tr00001_03.pdf (http://www.fda.gov/ohrms/dockets/dockets/00p_1322/tr00001_03.pdf)
Ms. Kate Winkler (from the Office of Congressman Lowey)
Pages 20 & 21
Quoteingredient statements are written for scientists, not consumers. For example, how many people know that surimi is another term for egg. Food allergic children should not be expected to decipher terms like "casein, albumin, or muso."
QuoteToo many manufacturers are preparing multiple products with the same cooking utensils or on the same production lines without properly cleaning the equipment. These practices must stop.
Dr. Michael Jacobson (Co-Founder of CSPI)
Pages 27 - 30
QuoteConsumers shouldn't have to play the game of "Where's Waldo" when they're shopping to find the ingredients they're concerned about.
Quotelabels typically give the chemical names of additives such as sodium caseinate, lactose, albumen, or gluten.
QuoteIt can be tough for the average person to memorize all the possible derivatives of foods to which they're allergic.
QuoteThe front of this product, for instance, says "vegetarian and soy cheese," but the manufacturer told us that the natural flavoring is actually skim milk
Anne Munoz-Furlong (Founder of FAAN)
Pages 33
QuoteThe first stop is when we go to the doctor and get a diagnosis, the doctor makes a diagnosis and tells the patient to go home and avoid milk or eggs or wheat.
Page 93
Quotesome patients are making the decision on their own to ignore these statements. This to me is playing Russian roulette. The other concern I have about this is that we are talking about children and it concerns me greatly that parents and others are making decisions because they're so confused about what's going on out there.
Dr. Michael Jacobson (Co-Founder of CSPI)
Page 98
QuoteContamination of food with undeclared allergens is what makes life so fearful for people with severe allergies. They live in terror that a food contains an allergen not listed on the label.
Pages 101 - 103
QuoteAt one end of the spectrum, contamination clearly is avoidable when companies intentionally add rework or other material that contains an allergen into a food that is not supposed to contain that allergen.
QuoteI think the time has long past for all this total voluntary flexible action on the part of industry.
Quotethe FDA should amend its GMP regulations with a requirement for companies to take all practical measures to exclude contamination of foods with unlabeled allergens.
Dr. Wilcox
Page 106
QuoteMuch of the industry discussion on good manufacturing practice and labeling focus on the eight major allergens. Does your organization agree that at this time that's the appropriate focus or do you think additional efforts also need to be placed on the less common allergens?
Anne Munoz-Furlong
Page 106
QuoteMy belief is that if we focus on the eight major allergens, we've covered 90 percent of the problem, and once we clear that up, we should start looking in other areas, but keep it to the eight so that we can focus there.
Dr. Michael Jacobson (CSPI)
Pages 133 - 137
Quoteundeclared colorings and flavorings have caused occasional allergic reactions
QuoteWe urge the FDA to require disclosure not just of the major eight allergens but others as well. To someone with an allergy to corn or carmine, it's no satisfaction that wheat and shrimp are disclosed.
QuoteThe cost and inconvenience to companies of providing disclosure is a small price to pay for protecting the health of sensitive consumers.
QuoteThe FDA's policy concerning allergenic incidental additives should be incorporated into a regulation that states explicitly that any incidental additive that may cause a serious allergic reaction should be presumed to pose a risk and be declared in the ingredient list.
Anne Munoz-Furlong
Pages 138 - 141
Quote
First of all, from the consumer's perspective, we know that strict avoidance is the only way to avoid an allergic reaction. We know that major allergens can be included in flavors, spices and colors and incidental additives. We also know that they are currently not required to be listed on the label, and that children have had allergic reactions to proteins even in low levels that you're going to find them in these categories.
Quote
A good example of this came to us several years ago when a cereal was put on the market. Within weeks after launching this cereal, we started to receive calls all over the country about children having allergic reactions. We contacted the manufacturer. They found that, in fact, the flavorings contained milk ingredients.
Quote
When a consumer sees natural flavors on the market, they have several options. The first one is avoid that product completely. If any of you have ever looked at the ingredient statement, you will know that if you avoid the products that say flavors, colors, or spices, you're going to have no food choices at all.
The second is to take a chance. Again, we're talking about children, so this is not acceptable as an option.
The third is to decide to call the manufacturer and ask very specifically does the flavor contain whatever the protein you're trying to avoid.
Quoteother companies will consider this information proprietary and will not release it
QuoteWe have had some companies tell our members that if they have a reaction, their doctor can call the company, and then they will divulge all this information.
QuoteSome of the companies will provide the information, but in writing, and it takes several weeks to get this information that will not satisfy the need of our members to get information quickly.
Quotereactions occur because someone is eating something they think is safe
Anne Munoz-Furlong
Pages 158 - 159
QuoteThe question about whether the milk allergic individual, what their understanding of milk products and byproducts are is going to be depend on each individual. The people that are more aware of it, probably the parents, the people closer to the patient, are going to be very aware that yogurt or butter are milk derived. People as we move away from the circle of care for that child may not necessarily make the connection and we see this over and over again when we're talking to grandparents and other caregivers of the child.
Quote
should we look at only the top eight or all of the allergens
QuoteWhat we would recommend again is to stay focused on the 90 percent of that problem. Once we figure out what the solutions are there, we can hopefully then quickly come by and address some of these other issues.
Victoria Geduld (a mom)
Pages 168 -169
QuoteFor the millions of allergic people, there are tens of millions who are affected. Think of the number of people who are involved in feeding a single child.
QuoteIn order for my daughter to trust her food supply and get back to the business of being a child, any allergens must be included in the ingredient section.
Julie Mendel Reinhard (a mom)
Page 173
QuoteI am unable to rely on the label itself to know if the food is safe for my son, and yet strict avoidance is the only sure way to keep him safe.
Mr. Janicki
Pages 191-192
Quote
Now, there is one area where I think my experience as a businessman makes me an expert and that's the talk about voluntary compliance rather than mandatory compliance.
Now, I think the voluntary efforts that have been spoken about today should be applauded, but they cannot really eliminate potential problems. Some companies will be more proactive than others, but there will always be companies that will drag their feet and not comply.
It's the nature of industry to resist regulation and to minimize costs. What we have here is a balance between cost and public health and it's the FDA's mandate to decide in favor of public health.
When statements are made about advisory labeling with "may contain" wording, I think that what was identified as unavoidable cross-contamination in many cases really means contamination that's too difficult to avoid or too expensive to eliminate. Again, I think it's the FDA that has the responsibility to protect the public and not leave these critical decisions up to individual companies to make
Mary Thorpe
Pages 192 - 194
Quotereading labels myself I notice that some cans of tomato paste list wheat flour as an ingredient. Don't ask me why it has to be there, but it is.
Quotesoy sauce has wheat in it most of the time. When soy sauce is a secondary ingredient, you don't know. So we have to avoid these things unless the labeling were there.
QuoteThere are other products like citric acid, MSG, stabilizers, monodiglycerides, dextrines, that can be made from different sources
Carol Roberts (grandmother)
Page 198
Quotewhat I thought about is we have a lot of people in this country who don't speak English. We have a lot of people in this country who don't know how to read. We have a lot of people in this country who don't have any knowledge whatsoever about what hydrolyzed protein or caseinate or any of these things are.
Rebecca Dugal
Pages 201 - 202
QuoteI'm entering the fourth grade at nine and a half
QuoteMost adults I am with prefer just not to give me food.
QuoteSince labels aren't clear, I don't eat many foods I may be able to eat.
Leila Leoncavallo (allergy mom & former CSPI employee)
Pages 209 - 210
QuoteI don't want my daughter to be a guinea pig to find out when food is safe and when it's not safe. I want to see the label in place in addition to the good manufacturing practices by all of these companies.
QuoteI know a lot of people have expressed concerns with the issue of reducing food choices. My daughter's food choices are already reduced. I have to call all of these companies to find out whether this is on dedicated equipment or not. Her choices are reduced. I just want her to have safe food choices. I don't think that having voluntary guidelines is going to make a bit of difference. It has to be regulated.
QuoteLabeling must be mandatory or the situation will simply be no different than the status quo. We will still need to call companies to get this information. This method is not only time consuming and frustrating, but it's often unreliable
Dan DuBravec (had been chairperson for CSA USA)
Pages 212 - 214
QuoteI've been taking notes kind of through the session here, and these are some of the statements I've heard today:
"Is looking into it," "starting baseline surveys," "suggested guidelines," "encouraging members to declare," " devoting energy to," "needs to look into further," "contemplating issue," "looking at practices," "area that needs attention," "struggling with for decades."
My main point I want to get across is that I think the time is now for the mandatory food labeling.
QuoteYou know we thoroughly look at labels, and we go in the frozen food department and we pick up a package of frozen broccoli, let's say. Now, it could say it contains broccoli, right, and water. You would never assume or even think that in packaging that it may be dusted with flour, but that does happen, and in terms of--I mean I have a sheet right here telling me that. You know I came in. I was just so shocked, and I had been with CSA for a long time, and this was even surprising to me that, you know, just buying frozen vegetables that I have to be cautious about that.
Dr. Jerry Shier (allergist from AAAAI)
Page 219
QuoteIn conclusion, although I sit here today representing a large body of health care providers, I can tell you first hand that labeling systems need fixing, and that there are many Americans, especially parents of children, that have a fear that is indescribable, a fear of food that can be paralyzing.
Sarah Gitlan
Pages 223 - 225
QuoteI am ten years old.
QuoteWhen I learned to read, five years ago, in kindergarten, I started with Dr. Seuss, Mother Goose, and ingredient labels.
I knew that Dr. Seuss and Mother Goose wouldn't lie to me, but ingredients labels, I couldn't be so sure.
Quotewho would guess that a common popcorn brand would use the words "natural flavors" to mean peanuts? And who would guess that the words "vegetable protein" and "plant protein" would be food companies' code words for tree nuts.
QuoteReading ingredients is a large part of food allergic children's lives. So large that the Food Allergy and Anaphylaxis Network published this story:
A mother was trying to teach her food allergic child not to talk to strangers. So, she asked her daughter, if a stranger in a car pulled up and offered you a candy bar, what would you do? Without missing a beat, the little girl responded I would ask them to read me the ingredients.
Carol Schrager (Sarah's mom, FAI & FAAN member)
Page 226
QuoteRaising a food allergic child without complete and accurate ingredients labeling is like walking through a mine field.
QuoteSo we turn to you, the Food and Drug Administration, the agency charged with protecting American lives by regulating the practices of food and drug manufacturers.
http://www.fda.gov/ohrms/dockets/dailys/00/may00/053100/cp001.pdf (http://www.fda.gov/ohrms/dockets/dailys/00/may00/053100/cp001.pdf)
& Melissa's
When Food Is Poison: The History, Consequences, and Limitations of the Food Allergen Labeling and Consumer Protection Act of 2004
By Laura E. Derrhttp://www.fdli.org/resources/resources-order-box-detail-view/when-food-is-poison-the-history-consequences-and-limitations-of-the-food-allergen-labeling-and-consumer-protection-act-of-2004 (http://www.fdli.org/resources/resources-order-box-detail-view/when-food-is-poison-the-history-consequences-and-limitations-of-the-food-allergen-labeling-and-consumer-protection-act-of-2004)
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In an email that I saved from 4/3/2008, James J. Kelly gave me permission from FDLI to quote from this article online so that it could be discussed in allergy group.QuoteYou are free to discuss and quote from that article as you like.
I was in a different online forum at the time that no longer exists ... before I made this my food allergy home.
Even though our conversation was brief, he was one of the kindest people that I've "met" during this food allergy journey. :heart:
Part of the email conversation also involved an FDLI employee named Anita Britton.
I never really used the permission too much because for several years, there was a public version of the entire paper posted at a LEDA law site for anyone to read.
I'm just a mom and I don't know much about copyright issues, but obviously, if FDLI ever wants any of these quotes deleted, they should be deleted immediately.
This is an article that I wish all USA allergists would read. It's one of my top 2 favorite allergy articles. Before I read it, I was a confused mom of a newly diagnosed food allergy child ... after I read it, I felt that I had a good understanding of USA food allergen labeling.
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I feel that there is still a lot of confusion regarding non-top8 labeling, so to me, this is a good enough reason for me to use that permission and quote from that paper in this thread.
Pages 78 & 79
QuoteThe FALCPA was passed in response to the fact that the information contained on the label has been inadequate to meet the needs of food-sensitive individuals.
Few people without thorough research would suspect that corn protein is found in iodized salt and orange juice, that products labeled "non-dairy"81 and bread may include milk protein, that soy protein may be present in canned tuna, and that turkey82 and cheese83 may contain wheat protein. In today's world of great scientific and technological advances in food production—where most food is processed (rendering ingredients unknown unless communicated to consumers)84 and even nonprocessed foods can be contaminated with allergens85—virtually any food item may have the potential to poison a food-sensitive individual.
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Page 80
QuoteThe FDCA requires that all ingredients appearing on the food label be listed according to their "common or usual name."91 For many ingredients, the "common or usual" name of a food hardly is common or usual. Consumers have long desired more easily comprehensible ingredient terminology.92
Given the following list of food ingredients—bulgur, couscous, durum, farina, modified food starch, hydrolyzed vegetable protein, kamut, spelt, artificial flavors, semolina, and buckwheat—few people would expect that the only ingredient in this list that is certain not to contain allergenic wheat protein is the one ingredient actually containing the word "wheat": buckwheat. Terms like albumin, lecithin, livetin, lysozyme, emulsifier, globulin, ovalbumin, and vitellin indicate the presence of egg protein. And the words caramel color, casein, caseinate, high protein flavor, lactalbumin, natural flavoring, solids, and whey can signal the presence of milk protein in a food product.93
Page 83
QuoteSecond, FDA regulations have exempted incidental additives, such as processing aids, from ingredient declaration when they are present in a food at "insignificant" levels and do not have a technical or functional effect in the finished product.114 FDA, thus, has recognized that "in some cases food labels may not provide consumers with food allergies with information about all the ingredients that are in the foods that they eat."115
QuoteIn addition to the spices, flavorings, and colorings and incidental additives exemptions, manufacturers were not required to disclose information about the source of certain listed ingredients, nor the way in which the ingredient was processed. For example, "starch" and "modified food starch" can be derived from corn or wheat. "Hydrolyzed vegetable protein" may contain a variety of grains, vegetables, or animal products, many of which contain the proteins of known allergens. Manufacturers simply could list "caramel color" on the label without identifying whether the ingredient was produced using sugar or wheat. "Lecithin" and "gelatin," which also may contain a variety of allergenic proteins, did not require elaboration.116
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Page 137
QuoteBeyond the Big Eight Allergens: The Neglected Food Allergy Sufferers
QuoteAs the co-founder of Food Allergy Survivors Together notes on her website for food-sensitive individuals, "If we have just one allergen not in the 'big eight,' this legislation is virtually useless to us. I know it will help some people with food allergies, but not all of us. Many (er, most!) ingredients will still be able to hide under guises."409
Page 138
QuoteA corn allergy is particularly debilitating. Adverse reactions to corn include life-threatening anaphylaxis and some reactions can require hospitalization. Corn is present in most processed foods. It can be the source of, or involved in, the processing of over 170 different ingredients that do not mention the word "corn" on the label (e.g., alcohol, artificial sweeteners, baking powder, bleached flour, brown sugar, citric acid, dextrose, fructose, fruit juice concentrate, honey, hydrolyzed vegetable protein, iodized salt, maltodextrin, saccharin, vanilla, xanthum gum, and yeast).411 Much of the wheat supply is cross-contaminated by corn. Adequate identification of the actual source foods in compound ingredients is imperative for these individuals to have any food choice freedom at all.412
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Page 150
QuoteWhether the FALCPA should have included more allergens— and more importantly, whether FDA should authorize the inclusion of more allergens in the future—thus warrants critical consideration.
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ok, I guess that's enough quoting to really illustrate what those with non-big8 allergens are still dealing with.
"Flavorings and Spice Are Not Always Nice"
http://www.amazingandatopic.com/2012/01/flavorings-and-spice-are-not-always.html (http://www.amazingandatopic.com/2012/01/flavorings-and-spice-are-not-always.html)
QuoteMy poor little girl was holding the bathroom trash can, and she was asking me, "Mommy, Mommy, why is my tummy hurting?
QuoteI wrote to the company to see if their "flavoring and spices" did, indeed, contain mustard, or maybe even sesame.
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"Why I Always Contact Food Manufacturers"
http://www.amazingandatopic.com/2014/09/why-i-always-contact-food-manufacturers.html (http://www.amazingandatopic.com/2014/09/why-i-always-contact-food-manufacturers.html)
SEPTEMBER 18, 2014
QuoteI would like to take a moment to explain a bit about how I reached the point where I email/call every single company to vet each new product that my daughter eats. I no longer go by what I see on the label, alone.
"Reading Labels for Food Allergies"
http://thrivingwithallergies.blogspot.com/2013/09/reading-labels-for-food-allergies.html (http://thrivingwithallergies.blogspot.com/2013/09/reading-labels-for-food-allergies.html)
QuoteAt this point, all companies that make these convenient and fun kids yogurts have called back with the news that yes, all do have strawberry in the "natural flavors", even the unhealthy looking bright blue cotton candy flavored ones. Some companies will not share what is in their "natural flavors" unless a signed letter from your allergist goes along with your request, or you can get your allergist to call them for you.
http://allergy.hyperboards.com/action/view_topic/topic_id/12093/post_id/237342#237342 (http://allergy.hyperboards.com/action/view_topic/topic_id/12093/post_id/237342#237342)
Boo - 9/4/2009
ConAgra
QuoteIf you have any allergen concerns outside of the Top 8 Food Allergens, we recommend you do not consume the product and consult your physician.
YKW - 9/6/2009
Heinz & their &#%* proprietary info.
CM ;D
QuoteCan you just imagine that conversation?
"Hi, Dr. Smith. We're here for our appointment. Good to see you again."
"Nice to see you, too. What are we seeing you for today?"
"Well, since {DD} has a sesame allergy, Conagra told me that we should."
<pauses>
"Huh?"
"No, really. Here, I printed out their directions from the e-mail they sent us when I asked about microwave popcorn {or whatever product}"
<reads>
<Thud.... thud... thud...> <--- that would be the allergist pounding his head on the desk in the exam room.
----------------------------------------------------
2013
http://asthmaallergieschildren.com/2013/02/24/ingredient-secrets/ (http://asthmaallergieschildren.com/2013/02/24/ingredient-secrets/)
QuoteOur contributor Susan Weissman told me that her friend Rose Ann Miller recently called Heinz customer service to ask whether mustard, to which her child is allergic, is one of the ingredients included under the entries "natural flavorings" and "spice" on the label.
Quotewe are not able to disclose whether it is in the recipe and, therefore, suggest that you avoid using this product
:paddle:
SURPRISE! Unusual or Unexpected Peanut/Nut Sources (http://foodallergysupport.olicentral.com/index.php/topic,43.0.html)
Foods / Companies to Watch or Avoid: due to soy (surprise sources) (http://foodallergysupport.olicentral.com/index.php/topic,627.0.html)
Unusual and Unexpected Sources for egg/egg protein: (http://foodallergysupport.olicentral.com/index.php/topic,616.0.html)
Hidden sources for Fish/Shellfish: do you know of any? (http://foodallergysupport.olicentral.com/index.php/topic,413.0.html)
What especially bothers me about the Mount Sinai "lollipop" example is that I seem to remember a story of someone reacting to hidden peanut flavor in something like a lollipop ... I tried to find the story, but I couldn't .... but it stuck with me because the lesson was "who would have thought that a manufacturer would put peanut as a hidden flavor in that product" ... it was just such an unexpected place to find peanut protein.
The risk/benefit considerations of how to deal with inadequate labeling are going to depend on lots of different factors. For example, a child with asthma, very low allergen threshold, & history of severe ana is a much different situation than somebody who has gone through OIT or who has a very high threshold with mild rxn history.
Just my non-professional mom opinion.
If you are dealing with a non-top8 allergy, I'd suggest talking with your allergist about the inadequate labeling issue.
This is something that is not always acknowledged, but not all allergists know a lot about non-top8 labeling ... it's important to have an allergist that is knowledgeable in this area so that they can give you good advice.
If it's ok with SL, I'm going to include her quote from another thread:
Let's talk about anxiety (http://foodallergysupport.olicentral.com/index.php/topic,8230.0.html)
Quote from: SilverLining on December 18, 2013, 09:55:20 PM
Pfft! The allergist I was seeing said "those peanut parents" were all over-reacting when they talked about cross contamination. Obviously he was no help. I never saw a mental health professional. I was able to get myself to a place I 'm comfortable with.
The last thing you need is an allergist that doesn't understand the true risks of inadequate labeling.
Enough people will think you are crazy when you try to explain labeling limitations ... they will think a quick look at the label is all that is needed to determine if a product is safe ... they will think you are over-cautious & over-protective & anxious for "unnecessarily" limiting food choices.
You need a knowledgeable, empathetic allergist.
Re: Living with Food Allergies, FEB 2013 (http://foodallergysupport.olicentral.com/index.php/topic,6726.msg154697.html#msg154697)
Quote from: LinksEtc on October 02, 2014, 06:26:42 AM
Quote from: Janelle205 on October 02, 2014, 01:55:04 AM
This is definitely minor, but...
I HATE it when companies label their alternative food products as 'Allergen Free'. People can be allergic to pretty much anything. People can be severely allergic to pretty much anything. 'Allergy friendly' is fine with me. I understand that I don't exactly have the most common allergens.
Your apple flour is NOT allergen free. The eight epi-pens in my house say otherwise, thanks.
I don't think that this is minor at all ... it's a great point. If somebody new to allergies (with a non-top8) sees & believes that "allergen free" stuff, they could have a rxn.
I think that there is something to the saying "ignorance is bliss".
After this thread, feel free to visit The Anxiety Thread (http://foodallergysupport.olicentral.com/index.php/topic,8230.0.html)
:P
Homa gave me permission to quote her here.
Re: CSPI Sesame Petition filed!!! (http://foodallergysupport.olicentral.com/index.php/topic,9675.msg181807.html#msg181807)
QuoteI'll try to reply without referencing anything specific in case you do delete what you shared, but the idea that allergists are willing to tell us "Avoid, Avoid, Avoid" but then when I approach them about labeling issues they tell me they either don't discuss them with patients or patients don't come to them with the concerns and it makes me wonder, you know? It took us three tries to find an allergist that wasn't casual about the idea of anaphylaxis, they had this notion that if you have the epi you'll be fine but I kept saying "I don't wan't my child to react in the first place." Recently there was an article on Asthma Allergies Children where they talked about a child being exposed to an allergen and the parent finding out that way that the blood test had been inaccurate - it reminded me of meeting with our allergist and having him say that I was "too good of a mom" when it came to avoidance because most families discover false positives through accidental exposure so we should have found out about the allergies E did outgrow, sooner. There's no winning, is there?
I added the bold/blue to Homa's quote.
-------------------------------
Re: Docs helping patients to surf the internet (http://foodallergysupport.olicentral.com/index.php/topic,9007.msg143205.html#msg143205)
Quote from: LinksEtc on July 01, 2014, 02:13:01 PM
Tweeted by @pash22
"Can patients get and use the information they need?"
http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo (http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo)
QuotePatients need information that is often very different from the information that doctors think they need.
Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information.
I guess that I'm done with my not-so-little intro .... anybody have any thoughts/comments/opinions to add?
I love you. :smooch:
What I think is often conflated when applying "allergy common-sense" is that it is emphatically NOT NOT NOT the same thing (as in, not even related to it) as "common" sense.
ALLERGY common sense is actually a good thing to follow. Why?
Well, because that kind of sense is the kind that asks the following questions....
Hmmm... a new product! Heyyyyy.... label reads safe..... hm. Company trustworthy with labeling? Unknown? :-/ how many ingredients? aimed at a market that eats a lot of {allergen} or for whom it'd be a selling point to have it in other related products? {looks at shelves} AHhhhhhhhh-- another product in the same basic package as this one-- only it very definitely contains the allergen. I knew it.
or sometimes;
yeah, sure, it's "just fruit" but... I dunno.... something about this makes me uncomfortable eating it. Sayyyy-- you didn't by any chance make something else while you were prepping this, did you?
And yes, that is roughly what my inner voice sounds like. It is a real life-saver for people like DD who have a very low threshold, because for her, most of her allergens might as well be non-top 8, thanks to "voluntary" and meaningless advisory labels that have in most cases reverted to don't ask-don't tell. :tongue: Yes, I'm lookin' at YOU, Trader Joes.
I'm mostly very content to listen when that inner voice has stuff to say to me. I'm always sorry when I don't. ALWAYS.
I'm reminded of a favorite quote of mine:
Quote
Better to be occasionally cheated than perpetually suspicious. ...
by B. C. Forbes
Only here, with the wry addition that it is also
even better to be perpetually suspicious than occasionally DEAD. :thumbsup:
CM, I love those quotes.
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Tweeted by @bethkracklauer
"Recipes That Take Tahini in New Directions"
http://online.wsj.com/articles/recipes-that-take-tahini-in-new-directions-1413560988?tesla=y (http://online.wsj.com/articles/recipes-that-take-tahini-in-new-directions-1413560988?tesla=y)
Quoteas chefs around the country are learning, pretty much anything goes
That's right up there with the cheery recruitment postcard sent by quirky Reed College to my then-senior in high school-- you know, the one with food allergies.
Every day is like a rolling Smorgasbord!
:misspeak: :thud:
Right. Because nobody expects The Spanish Inquisi-- THAT. Some surprises really, really SUCK when you have food allergies.
Tweeted by @MountSinaiNYC
Quote"Don't assume you know whether a piece of #candy is allergen-free or not" Dr. Scott Sicherer on what to know mshs.co/1xezFxi #allergy
"Yes, Your Kids Can Still Trick-or-Treat with a Food Allergy"
http://www.bonappetit.com/entertaining-style/holidays/article/food-allergy-halloween (http://www.bonappetit.com/entertaining-style/holidays/article/food-allergy-halloween)
Quote"It may seem logical that there'd be no dairy in a sucker candy, but until you see it on the package, you don't know for sure," he says.
Ummmm ... no comment ... just :hiding: