Monday, December 27, 2010

Threshold Research

University of Nebraska Lincoln has a division called the Food Allergy Research and Resource Program. Their program has done a number interesting projects. One of their current projects is studying how much of a food allergen is too much--in other words, how much can an allergic person ingest before an adverse reaction occurs?

I know from Sophie's experiences that not every exposure results in a bad reaction--some exposures result in no discernible reaction. So how do you go about finding what the exposure threshold is?

The FARRP team has analyzed data based on challenges at a large food allergy clinic to begin determining what the threshold may be for peanut allergies. Obviously there's a great deal of additional research and analysis necessary in order to come to any real conclusions about allergic thresholds.

I had a few questions as I read about the study, and I was able to contact Professor Stephen Taylor for some additional information.
Me: Is the threshold different for different people?

Professor Taylor: Yes, absolutely. The range of individual thresholds is amazingly broad. For peanuts where we have the most information, individual thresholds (as defined by lowest dose provoking a mild objective reaction) range from 0.4 mg up to above 8 g (expressed as whole peanut). Since an "average" peanut weighs about 350 mg, some with an individual threshold would have to eat 20 peanuts to experience symptoms.
Individual thresholds may also vary with age over time. This does not appear to happen for peanut in most individuals so it is a life-long affliction. But many infants with milk allergy will ultimately become tolerant - outgrow their allergy (not all of them do unfortunately).

Me: What symptoms are considered a "reaction" and is this standard being universally applied?

Professor Taylor: Great question. Not everyone uses the same definition of a reaction. We are currently seeking consensus. But, our group uses the first signs of an objective reaction (something the physician can see such as a hive or two, lip swelling, flare of eczema, etc.). We have one exception to that definition and we also recognize abdominal pain (a subjective symptom) as a credible sign especially in infants. Other groups use the first subjective symptom (mouth itching, stuffiness, etc.) as the definition of a reaction. We know of one group that requires 3 or more hives as opposed to just one (which is fine in our definition).
In all of these definition, the signs and symptoms would spontaneously resolve within 15 minutes without any pharmacological treatment. It would be quite unethical to continue with challenge doses to determine the amount needed to provoke a more serious reaction.
In our opinion, the first sign of a mild objective reaction is the most universal and consistent definition. Subjective symptoms appear to be more dependent and variable depending upon the physician/nurse doing the challenge.

Me: If thresholds are established for each allergen, in what ways will this complicate the process of consumers determining safe foods? Since allergies tend to have a cumulative effect (for example, a consumer may eat more than one food at a single meal with a "below threshold: does of their allergen), will consumers opt to maintain their zero exposure standard, rather than risking a reaction based on the cumulative effects of eating multiple foods?

Professor Taylor: For most IgE-mediated reactions, symptoms are immediate (within 2 hrs) and not cumulative. We are only seeking to define thresholds for these immediate hypersensitivity type of reactions. This approach would not be applicable to more delayed conditions where cumulative doses might matter (still unclear) such as eosinophilic esophagitis, ulcerative colitis, celiac disease, etc.
The idea is to establish population thresholds (e.g. for all peanut-allergic individuals) that would be safe for the vast majority of all consumers with a particular food allergy. We are currently in the research phase. Consensus has not been reached on any of those population thresholds. Obviously, this must be approached with great care and consensus must be sought. Consumer groups such as the Food Allergy & Anaphylaxis Network must be included in reaching consensus but we have only now initiated the beginning of that process because we are still in the research phase. Scientists have a lot of individual threshold data for peanut, milk, and egg but lesser amounts of data for other allergenic foods. Thus, we may need to generate data before we can even think about thresholds for all allergenic foods.
How will thresholds affect consumers? I cannot be sure at this point. Our goal at the moment is to use population thresholds to guide industry use of precautionary/advisory labels (e.g. may contain peanuts and the like). With no guidance on thresholds, the food industry tends to apply such labels to products on a rather wide scale. Many of these products contain no detectable peanut or milk (the ones that we have looked for) using assays that would detect amounts below any known threshold dose for individuals.
Consumer behavior regarding thresholds is another unknown. Obviously, consumers will need to trust that these levels are safe. That is why widespread consensus is so important. We recognize that communication with allergic consumers is ultra-important on this subject but it is probably premature to make a major effort here until the scientists reach some level of consensus. But ultimately the consensus needs to include consumers, physicians (allergists), public health agencies (e.g. FDA), the food industry, and the research scientists.
I realize that consumers make every attempt to adopt a zero exposure standard. Until thresholds are established, they have no other choice to stay safe. But, recognize that the real goal is safe and not zero.
As we establish thresholds, we do need to take many factors into account - individual differences, possible exacerbating factors (such as other illnesses, exercise, medications, pollen season, etc.), and certainly the ingestion of multiple foods in a meal. All of that is part of the ongoing discussion. Again, rest assured that everyone has the exact same goal - safe foods for allergic consumers.

I am thrilled by this research and eagerly look forward to watching the progress of this group.

Wednesday, December 22, 2010

Good News in Eating Out with Food Allergies

According to, "The top 10 menu trends for next year will be locally sourced meats and seafood, locally grown produce, sustainability as a culinary theme, nutritious kids' dishes, hyper-local items, children's nutrition as a culinary theme, sustainable seafood, gluten-free/food allergy-conscious items, back-to-basics cuisine and farm-branded ingredients."

Gluten-free and food allergy conscious items made the top 10 new menu topics! I can't wait to see what menu changes or new restaurants will open up in my area!

Katelyn Carlson

My heart goes out to the family of Katelyn Carlson, the 7th grader who died of anaphylaxis on Friday at school. She attended a public school in Chicago, and was known to have a peanut allergy. The cause of her allergy attack hasn't been released, and perhaps isn't known. It has been widely reported that the class was eating food ordered from a local restaurant, and some believe that may be the cause of her reaction, but another peanut allergic student was in the classroom and there has been no mention of that child having a reaction.

I wish I knew more about what precautions had been taken and what went wrong for Katelyn. I feel ill at ease, knowing that Sophie faces this danger every day at school, and even today playing at a friend's house. Food allergies don't take many lives, but any preventable death feels like a tragedy.

May the Carlson family and friends have peace at the Christmastime. Their daughter is surely in a better place.

Friday, December 17, 2010


According to a recent press release from FAAN, "FAAN’s (the Food Allergy & Anaphylaxis Network) CEO, Julia Bradsher, will ring the New York Stock Exchange (NYSE) Closing Bell, joined by FAAN’s Board Chair Andrew Gilman and his son Sam, as well as FAAN Ambassador Who Cares Chef Ming Tsai and his son David."

Chef Ming Tsai, as well as being a chef, is a spokesperson for FAAN. His son has food allergies. With his experience as a chef and as a father, he is able to give advice about eating out and has worked to increase food allergy awareness and compliance with regulations.

I wish I knew how FAAN got this set up--more of the story, so to speak!

Saturday, December 11, 2010

New Food Allergy Diagnostic Guidelines

A few days ago I first saw a news story about new diagnostic guidelines for food allergies. One thing I found surprising is the difficulty of locating the actual guidelines. Multiple news stories stated that the guidelines came from the American Academy of Pediatrics, when they were actually issued by the National Institute of Allergy and Infectious Diseases. The summary for clinician use is available now, and a summary for patient/parent use will be available soon.

The important highlights in my view are as follows:
Diagnosis of IgE mediated Food Allergies needs to be based on Food Elimination diets and Oral Food Challenges. Skin Prick Tests and Allergen Specific Serum IgE Tests can play a part in diagnosis but cannot be the sole piece of information. Intradermal Tests and Atopy Patch Tests are not recommended for use in food allergy diagnosis, even in conjunction with other tests. There are a number of other tests listed as not recommended, most of which I've never heard of, including something called Hair Analysis. Regarding non-IgE mediated allergies, the recommendation is to rely mainly on medical history.

Management of food allergies is recommended to consist of avoidance of the allergen. "There are no medications currently recommended by the EP
to prevent IgE-mediated food-induced allergic reactions from occurring in an
individual with existing FA." It's important to note that there is no strategy for management of food allergies other than complete avoidance.

Prevention of food allergies is addressed as well--and essentially there is no recommended strategy. Avoidance of common allergens is not recommended during pregnancy or breastfeeding, and it is also recommended that starting solid foods is not delayed in children at risk for food allergies.

I find this document fascinating. It is, of course, based in current data and research, and there are a few new pieces of information. I still think it was worthwhile for me to avoid allergens while I was nursing my 4th child (the one after Sophie!), even if these doctors aren't sure it makes a difference. It gave me the assurance that I did what I could to prevent her from having allergies. And anyway, she doesn't have any food allergies, so I suppose I could sat that it worked. ;)

Friday, December 3, 2010

The Good Side

We so often hear about injustices and negatives associated with food allergies, and this article highlights a positive allergy related experience. I hope this can inspire all of us to take a minute to think about the positive experiences that we've had related to food allergies.

Friday, November 5, 2010

Mother's Intuition

Last month National Jewish in Denver issued a press release about their "new" findings that asthma might be caused by food allergies in some people. But mothers of food allergic children could have told you this years ago.

"Our study suggests that food allergies may be an important factor, and even an under-recognized trigger for severe asthma exacerbations. People with a food allergy and asthma should closely monitor both conditions and be aware that they might be related," said Andrew H. Liu, a lead research with National Jewish.

The press release also states that, "Researchers could not determine if food allergies actually cause asthma attacks or if asthma and food allergies are both manifestations of a severe allergic profile. They speculated that food-allergic reactions might be triggered in some people with asthma only when combined with strenuous exercise." You can read the rest of the article here.

Seriously? I could have told you all this and more. In fact, I can tell you that food allergen exposure can absolutely cause asthma attacks. Sophie got to the point with her wheat allergy that every single time I boiled pasta made from wheat, she had an asthma attack. Every time! And she almost never has an asthma attack without an allergen exposure. I suspect that if the allergen is atomized by boiling it or using another similar technique, and the food allergic person breathes in the atomized allergen, most people would present with an asthma attack.

I'm glad to see that medical science is catching up with mother's intuition slowly but surely.

Tuesday, November 2, 2010

What to Eat Between the Holidays

With the passing of Halloween, we are now in the midst of the holidays, and all of the busy-ness and craziness that come with them. At times like this, it's important to have some quick go to meals--things you can keep on hand and throw together in just a few minutes. This one is top of the list for my family:

Mexican Beef with Rice

2 1/2 cups white rice (or 2 cups brown rice)
5 cups water
1 15 ounce can tomato sauce or diced tomatoes
1 lb. of browned ground beef (I actually use ground turkey)
1 tbsp. chili powder
1 tsp. cumin
1 tsp. garlic powder
1 tsp. salt

Put all ingredients in a big pot or a rice cooker (not steamer) and bring to a boil. Simmer until the rice is done.

black beans
or use your imagination...

Friday, October 29, 2010

Holiday Specialties

The holidays are just around the corner, and it seems at this time special holiday recipes and family favorites come up that we don't even think of the rest of the year! Often these special holiday favorites will require special holiday ingredients. To find groceries that suit your food allergies, I suggest using my Sophie Safe Food Guide. If you're looking for safe baking chocolate, and you're allergic to milk, wheat, corn, peanuts and eggs, you can build a profile with your allergens, then search the category called "Chocolate Chips." The Food Guide will show that Enjoy Life, Saco, Sunspire, and Baker's all make chocolate chips that should be safe for you.

Of course, you should always read the label, as the package may have additional or different information from what's been posted online. And you are responsible for your own food choices. Which will hopefully be made simpler by the awesome allergy grocery finder, the Sophie Safe Food Guide!

Tuesday, October 26, 2010

Halloween How To's

If you're looking for suggestions on how to manage Halloween candy--whether managing the allergies or the sugar is you focus--check out last year's post on Halloween candy!

Monday, October 25, 2010

Halloween Treats

If you're looking for some goodies to celebrate Halloween, and you have my cookbook, here are a few things that we like to make around this time of year:

Pumpkin Muffins
Pumpkin Pie Morsels
Oatmeal Cookie Cutouts (Cut out and decorate little pumpkins, or use your gingerbread cookie cutters but decorate them with the skeletons!)
Zucchini Bread
Chocolate Zucchini Muffins
Shepherd's Pie (Make the bottom layer and the mashed potatoes and then
shape them like a ghost on each plate instead of baking it. Use peas
for the ghost's eyes.)


Thursday, October 21, 2010

Food Allergy Manners

A few days ago, Ask Amy with the Chicago Tribune published a question regarding food allergies. You can read it here:,0,7880316.column?page=2

The writer describes a situation in which she avoided dishes at a dinner party rather than inconvenience her hostess by letting her know about the allergies ahead of time. In a similar situation, what have you done or what would you do? I think I have always informed hosts of Sophie's food allergies, and consulted them on the least obtrusive way to accommodate them (and I always offer to supply the accommodations as well!).

What do you think?

Wednesday, October 20, 2010

Kosher Nation

Kosher Nation by Sue Fishkoff has a fascinating premise--that of those who purchase Kosher foods, the majority are, in fact, non-Jews! Among the non-Jews buying Kosher, people with food allergies make up a large percentage. I've often wondered what the various Kosher symbols mean and how food "becomes Kosher," and for that reason, this book is definitely on my to-read list. The publisher recommends it for "anyone interested in food, religion, Jewish identity, and big business," so I'm sure this book will fascinate me!

Saturday, October 16, 2010

Think F.A.S.T.

I don't always peruse the food allergy news to the North, but I had a minute to do so today and I love this new acronym that the Ontario Medical Association and Anaphylaxis Canada have put together: Think F.A.S.T.

"F.A.S.T can include any of the following:

* Face: itching, redness, swelling
* Airway: trouble breathing, swallowing, speaking
* Stomach: pain, vomiting, diarrhea
* Total body: hives, rash, weakness, paleness, sense of doom, loss of consciousness." (

The focus of the campaign is to increase readiness of the general population to support those with food allergies through their ability to recognize a reaction. This is especially important for parents--you never know when your child will bring home a friend with food allergies. I love that it is easy to remember and it covers all of the main symptoms of anaphylaxis.

So what should you do if you spot F.A.S.T. symptoms? Administer epinephrine and call 911 if a child is experiencing symptoms in 2 or more areas of the list, or if a single symptom is worsening rapidly or severe on its own, such as difficulty breathing.

Tuesday, October 12, 2010

EpiPens in first aid kits?

Well, I haven't seen Epipens in first aid kits yet, but I think it's coming. Chances are good that if you ask around, you'll find that you know someone who is allergic to bees. And chances are also good that they don't carry epinephrine, even when they're engaged in outdoor activities that put them at risk for a bee sting. (I'm not talking about robbing a beehive here, folks, just going out for a hike, or a picnic, or even to the park.) But feeling safe won't protect you from a fatal reaction if you are stung by a bee and help is too far away. Which is why I think that Epipens should be in first aid kits on guided hikes, sleep away camps, and other similar situations.

It seems like others (like the people who get to make these kinds of decisions) are moving closer to the same opinion, based on this report:

In a meeting of the Wilderness Medical Society it was recommended that personnel who are otherwise trained to administer emergency medical treatment should be trained to administer Epipens as well. There may be some legal questions with implementation, so the WMS also recommended that organizations should obtain legal counsel concerning Epipen administration by lay persons in a time of need. Currently, WMS asks that individuals carry their own Epipen, and are supporting the idea of staff being trained to administer it. But in my mind, this is only a couple of steps away from including epinephrine in first aid kits. And that is a good thing.

Sunday, October 10, 2010

Birthday Treats at School

The question of how to handle birthday treats at school comes up every year for Sophie. Occasionally parents will make the effort to find out what they could bring that she could have, but like many other kids with food allergies, our fall back solution is a box of safe treats kept by the teacher for those surprise birthday celebrations. This year is much the same. But it might not be that way for allergy kids forever...

My younger (non-allergic) daughter has a September birthday and she wanted to bring a birthday treat to share with her class. I had heard that there is a child with allergies in the class, but I don't even know his/her name. Being a procrastinator by nature, I didn't even think about asking the teacher about the child with food allergies until the day of--too late to contact a parent and buy an appropriate treat. Instead I suggested to my daughter that she choose a little toy to pass out instead. She brought bouncy balls--one for each student in the class--and the other kids LOVED them.

The next week, another student had a birthday, and he brought toys instead of food as well. A new trend perhaps? One can always hope!

Wednesday, October 6, 2010

Flu shots for people with food allergies

It's that time of year again, when people are getting their flu shots. Or they are getting their flumist. And the doctors lecture about how important it is to get, especially this year (why especially this year?). Over the last few weeks all 4 of my children have had their well-checks. 2 got a flu shot, 1 opted for the FluMist, and 1 is allergic to eggs. Last year I thought I would have her get the FluMist since she can't have the flu shot without taking extra precautions, but Sophie also has mild asthma, which is a contra indicator for the FluMist.

Our pediatrician recommended having a skin test at the allergist's office to determine whether Sophie will react to the shot, which is cultured in eggs. I have never been brave enough to go this route. I'm not worried about the skin test, but if she fails the skin test, she can get the shot "in doses", which essentially means getting 4 or so shots over a several hour period. It's just not my idea of fun! However, I am going to try it this year, after reading this article from Johns Hopkins:

For those of you with egg allergies, what is your approach to the flu shot? What is your experience?

Wednesday, September 29, 2010

Food as a Weapon?

Food as a weapon? Sounds a little far-fetched, depending on your experience. But for those of us who have swelled up at the touch of a nut or other allergen, or seen someone close to us do the same, it is easy to imagine. Unfortunately, it is also easy for school age children to imagine. A recent study published in the Annals of Allergy, Asthma & Immunology reports on the frequency of bullying targeting children with food allergies. According to the survey data, approximately 25% reported negative interactions with other children focused around food allergies. And of those, 1/3 experienced physical bullying regarding their food allergies.

Although we weren't contacted for this study, Sophie falls in that last third. Thankfully, she has only been physically targeted once, but once is certainly more than enough when it comes to this kind of thing.

When Sophie was in 1st grade, a girl she didn't know sat down next to her at lunch. Sophie's food allergies came up in conversation, and the girl held up a cookie from her own lunch, asking, "Can you eat this cookie?" When Sophie said, "No, it probably has wheat and eggs in it," the other girl put the cookie down right next to Sophie's food, getting crumbs all over the place. Sophie was shaken by the incident. She decided she was finished with her lunch anyway and hurried outside to recess.

Thankfully, that afternoon she spoke to me about the incident and I had the opportunity to speak with her teacher. Her teacher was furious and quickly took steps to educate the child about the seriousness of the action.

In this case, we don't really know if the "bully" understood the potential damage she could inflict. Sophie interpreted her tone as negative, but without another witness we couldn't say for sure. But in other cases, intent seems much more clear. There have now been several cases in the United States in which the bully has actually been arrested and charged with a crime for food allergy related bullying.

On the surface, bullying is bullying is bullying. But the fact that many adults, including those in a position of authority at schools, underestimate the severity of food allergies increases the risk for the targets of food allergy bullying. Threatening a child with a food he or she is allergic to is tantamount to threatening that child with a loaded gun. Both can kill, and equally quickly.

Thursday, September 16, 2010

Decisions, decisions...

How do we make decisions that affect our children, especially with food allergies? When trying to negotiate their schooling, classrooms, socials events, friends, how do you decide when to speak up and when to let things take their own course? As I look back over my decisions as a parent, I think there are a couple of major things that I considered (or wish I had!) to aid me in decision making.

1. Health/Endangerment: is this situation putting my child in the way of physical harm? Is my child likely to end up in the hospital if this situation continues?

2. Emotional/Spiritual Health: is this situation likely to cause my child emotional damage? Will this situation adversely affect my child's spiritual growth?

3. Discomfort: will my child be extremely uncomfortable in this situation?

Balanced against possible benefits, these questions can guide us as parents as we try to navigate things like:

Should I send my child to spend an afternoon with the aunt who doesn't believe in food allergies?

Do I need to stay with my 7 year old at a classmates birthday party?

Should I become homeroom mom and coordinate the daily snacks again this year?

Does it makes sense to take my child to the doctor on day one of her fever, or should I wait?

Should I let the doctor give my child the newest vaccine, or this year's flu shot?

After considering the options, benefits, and drawbacks, I have found it is often helpful to ask one more question:

Who does this decision benefit, and am I okay with that?

Looking back, I realize that I sometimes have made decisions about caring for my children that were for my benefit, or a decision about one child that actually benefits another child more. While it is important to do what's best for the whole family, I also like to be aware of why I have taken certain actions. I believe motives can be as important as actions, so I try to be sure that my motives are in line with my values and goals as much as possible.

As a parent of a child with food allergies, I find that my decisions inherently have more potential damage than they did before Sophie was born. If you have found that to be the case as well, I hope you will benefit from my decision guidelines.

Wednesday, September 1, 2010

Food Bans

(Please note that I realize that my views do not cover every possible scenario, and I also realize that younger children may have different needs.)

I have thought a lot about food bans in schools, since Sophie has food allergies and since our school has considered a food ban. I am personally not in favor of food bans. I have three basic reasons to oppose them. First, a food ban is unnecessary for most people with even severe food allergies. Second, a food ban creates a false sense of security for those who do have an extremely sensitive allergy. Third, other measures would be more effective in preventing classroom contamination than a food ban.

Food bans--completely eliminating a particular food or food group--are unnecessary for most people with food allergies. Very few people over the age of 4 will have a reaction solely based on the presence of their food allergen. There are many anecdotes about reacting when a sibling ate a peanut butter cup or other similar things, but in reality most children will not react unless they come into direct contact with the allergen. In the rare instance that a child does struggle with allergies after eating with other children, special arrangements might be made for that child to eat in a separate area.

In the event that a food is prohibited from a school (or other environment), it can create a false sense of safety because, in actuality, it is nearly impossible to monitor or enforce a ban like this. While children may move away from peanut butter sandwiches, they will continue to bring other items containing peanuts, such as granola bars and cookies. A situation could easily arise where an allergic child makes an assumption of safety about foods that are contaminated. Additionally, banning a single food, like peanuts, will not solve food allergy problems for most schools. Most children have more than one food allergy and peanuts are not necessarily their biggest concern. Should we start banning multiple allergens from schools?

There are several alternatives to food bans that should be considered. Schools can designate specific areas for eating, and allow food only in those areas. One model might be that children eat all of their snacks and meals in the lunchroom. For a school with no lunchroom, all food could be consumed at the child's own desk. In both scenarios, the areas would be cleaned immediately after every meal. Schools can also institute hand washing before and after lunch, to prevent contact with allergens on the playground and in other areas of the school. Another possibility is to institute partial bans; based on the allergens affecting each classroom, ban the offending foods for that classroom only.

These alternatives to the whole school peanut ban are easier to implement and enforce, can be customized for the needs of the particular student, are less restrictive to the students in general, and model solutions that are more adaptable to the outside (of elementary school) world. In the long run, I believe that students with food allergies will be safer and better equipped to manage their food allergies if these types of ideas are utilized in place of the more generalized food bans.

Tuesday, August 24, 2010


I first met Sally...well, I actually haven't ever met Sally in person. But Sally is one of my online friends. She contacted me shortly after Sophie Safe Cooking was published, because we have a common goal: to LIVE with food allergies.

At the time that Sally and I first "met" she was writing a blog called Aprovechar, in which she discusses the dietary changes she has made over the years, why she made changes, and the benefits she's experienced as a result. She has had other projects over the years as well, but her newest one is a culmination of all of those:

As you explore Sally's new website, you will find beautiful and inspiring photography (did I mention that she's an artist, too?), stories of lives she's helped to change, and resources to help you change and improve your food world.

Thank you, Sally, for encouraging others, and especially encouraging me, on our continued journey through food!

Friday, August 20, 2010


Most of the time, I don't really like to get on the bandwagon. I would rather ignore whatever the latest bandwagon is until I have time to research the topic and decide my own opinion. So it is with reluctance that I am getting on the Joel Stein Bandwagon.

Joel Stein? Who's that? Joel Stein is a columnist. He wrote a rather inflammatory column which was published in the Los Angeles Times in January, which opened with this line: "Your kid doesn't have an allergy to nuts. Your kid has a parent who needs to feel special." This was followed with lots more nonsense about food allergies.

Lots of food allergy bloggers and writers were angry. (Surprise, surprise!) But then something sad happened--Joel Stein's little son Laszlo had an allergic reaction after eating mixed nuts. This wasn't your 5-hives-and-an-itchy-mouth type reaction, either. Joel describes it like this, "Laszlo started sneezing, then breaking out in hives, then rubbing his eyes, then crying through welded-shut eyes, then screaming and, finally, vomiting copiously at the entrance of the Childrens Hospital emergency room..." Having seen Sophie like this, its enough to break my heart. And clearly, Joel has learned a little--he wrote a new article in which he explained his new point of view.

Normally, at this point I would still be completely ignoring all of this. After all, what we have here is some guy who doesn't know squat about food allergies and said some stupid things, after which he learned a little about food allergies. Here's the problem: now all those food allergy bloggers who were mad before are writing about karma and nut free schools and 20 other related things, all mean-spirited.

BACK OFF! We need to give this guy some space! He is still learning about food allergies and what that's going to mean for his kid and his life. All of us can look back on our early days and we can see that there is a learning curve with food allergies. I made mistakes; I'm sure you did too. But unless Mr. Stein makes mistakes that endanger his son, it's nobody's business. And even then it's up to his wife and social services and a doctor to sort out, not the public! So let's not worry about whether he's going to exclude nuts from his house. And let's not worry about his son's school and classroom. Let him, his wife, and their doctors manage Laszlo's allergies.

Every kid is different. Their allergies are different. Some kids can sit next to someone eating peanut butter with no problems. Some kids have to leave the house if there is pasta boiling to avoid reactions. Let's allow the Stein family to determine how to manage Laszlo's allergies, just as we were allowed to choose for our own children.

Tuesday, June 22, 2010

Pecan Reaction 2005

When Sophie was 3 years old, our allergist lifted his ban on certain foods for her. Because of the number and severity of her allergies, he had previously restricted her from having tree nuts, fish and shellfish, even though she had no history of reactions to them. After she turned 3, he felt that this restriction was no longer necessary.

Knowing that pecans are a favorite of basically everyone in our family, my husband and I decided to try pecans first. On an afternoon when we were both home, we gave Sophie one pecan half. She chewed and we she began to swallow, she said, “My mouth is burning!” I immediately gave her a double dose of Benadryl. Within 5 minutes, she had huge welts following her lymph track and she was struggling to breathe. I guessed that we just needed to help her breathing until the Benadryl took effect (usually about 20 minutes). Based on that we decided to administer her inhaler and followed up a few minutes later with a nebulizer treatment.

After a few ups and downs, her breathing eventually returned to normal and we were able to continue with our plans for the rest of the day. In hindsight, I think I should have administered the Epipen. She had 2 body systems reacting: skin and respiratory. Her symptoms were responsive to treatment but only temporarily; breathing difficulties resumed within a few minutes of administering albuterol. I did not have the proper equipment to be able to determine other warning signs, such as blood pressure dropping. I am grateful that Sophie pulled through—we were certainly blessed—and given another similar situation, I would just give her the Epipen and go to the hospital.

Monday, June 21, 2010

Wheat Challenge 2003

Wheat challenge--#1
As we prepared to go to Sophie's wheat challenge a few days ago, a scene replayed through my mind again and again...Sophie first wheat challenge. She was 1 year old. Her blood tests indicated that she was likely to be able to pass a challenge. At the time, I was desperate to have her dietary restrictions loosened, since I had very few recipes that worked with her long list of allergens.

We did the challenge at the doctor's office, of course. Sophie cooperated readily with eating the Cream of Wheat. She ingested several doses without a problem. About an hour into the challenge, she was tired and falling sleep in my arms. This seemed natural, since it was mid-afternoon, nap time to a toddler. Just as the nurse was preparing her next dose of Cream of Wheat, Sophie lifted up her head, vomited all over me and herself, and hives broke out all over her arms and face. As suddenly as her reaction occurred, this wasn't the scary part.

Several hours later, after we had endured observation, picked up her sisters, and made it home, I noticed that Sophie's bottom was red and tender looking when I changed her diaper. Thinking that a bath was in order, I ran some water and stuck her in the tub and then realized that we had a real problem. Sophie had red welts on her abdomen as well, and when I put her into the water, she tried to lay down, like she was going to sleep. This may be normal for some toddlers, but not for Sophie—giving her a bath usually means I get a shower too from all of her splashing and playing.

I later learned that Sophie was experiencing part two of a biphasic reaction to the wheat she had earlier ingested. I don't know a lot about what causes biphasic reactions, but the timing of the second phase suggests that it was triggered by wheat remaining in her system after the Benadryl she was initially given had worn off. Some 24 hour Zyrtec and a nebulizer treatment quickly got Sophie back to wiggling free and running to play, but when we prepared for a second wheat challenge, I kept coming back to this second phase of that reaction. Surely an older, more vocal Sophie would tell me before things got so bad, right?

What happens during a food challenge?

There are probably some variations in the methods used for food challenges by various offices, but our allergist's procedure has been standard in the 7+ years that we've worked with him. Sophie had her first food challenge when she was 1 year old, and she had her most recent challenge a few days ago, and they were much the same.

For almost all of our food challenges, we were asked to provide the food. The exception to this was her peanut challenge, where the RN used peanut butter that she keeps at the office for those challenges. For Sophie wheat challenges, both times we were instructed to bring Cream of Wheat and some sugar to make it more palatable. When we arrived at the office, the RN prepared the Cream of Wheat. And then we began.

Dose 1: A tiny amount (approximately 1/8 tsp.) of the food was placed on Sophie's tongue. With peanuts, the RN touched the food to her tongue and then scraped it off, but with milk and wheat she was instructed to swallow it. We then watched for signs of a reaction for 10 to 15 minutes.

Dose 2: Sophie was given slightly more of the food, maybe ¼ tsp. And again, we waited to see if she would react for about 10 to 15 minutes.

Doses 3+: Each dose was larger than the previous dose. The size of the final dose depends on the food being tested. For Cream of Wheat, Sophie ate the entire bowl by the time we were done. After eating the large final amount, we waited for about 30 minutes at the office for her to react. Since she didn't, we got to go home with wheat removed from her list of allergens! The whole process takes about 2 hours.

It is vital for people with a history of serious food allergies to do their food challenges with a physician at his/her office. If Sophie had started to react at any point during the process, the RN and allergist have an abundance of medications available to treat her symptoms, as well as the requisite experience to know how she should be treated. Had there been a problem, they could have administered any combination of Benadryl, steroids, albuterol, and epinephrine, based on her symptoms. Never try a food challenge at home, even if you have medications there. Our experience with Sophie's reaction to a pecan reaffirmed this for me!

Thursday, June 17, 2010

Wheat is a food again!

Today we went to the allergist's office to have a food challenge for wheat. Based on last week's (or was it the week before last?) skin tests, our allergist felt really confident that Sophie would be able to eat it with no problems. We arrived a little before 1:00. At 2:30, Sophie had eaten an entire bowl of Cream of Wheat, and was still feeling great. At 3:00, we said goodbye to our doctor and the RN who administered the challenge, and drove home knowing that Sophie can now eat wheat. And, in the space of 2 hours, wheat became a food again.

Friday, June 4, 2010

??Tree Nut Cross-Reactivity??

Today was Sophie's annual allergy exam. Sophie wants to try to eat some tree nuts, so she had skin tests for some of the tree nuts today, and she had a definite negative to almonds.


Our allergist wants her to continue to avoid all tree nuts, because of cross-reactivity. And what is cross-reactivity? Well, apparently all tree nuts are very similar in their protein makeup, so if you're not allergic to almonds, and you eat them 100 times with no reactions, but your 101st time you might have a reaction anyway.

So, we are trying to sort this out. Have any of you had any cross-reactions to things that were not your allergies? Tell us about it.

Mobility and Allergies

Since I've been on this trip down memory lane, today I'd like to detail what was perhaps the most difficult time since Sophie was diagnosed with food allergies. You might think that the first weeks or months were the hardest, and in some ways I suppose they were. However, Sophie was diagnosed at 3 months old and I think that things became most difficult when she was about 8 months old. Why after 5 months of adjustment time was I suddenly going crazy with worry over her food allergies? Because at about 8 months old, Sophie became mobile.

That's right, mobility is a problem with food allergies. Maybe not for every kid with food allergies, and maybe not in every food allergy family, but in ours, it was a problem. With 2 older siblings, who were still relatively little kids, sometimes food was dropped on the floor. And Sophie liked to eat it.

The severity of this problem really hit home to me one day when my husband called from work. It was about 10:00am. In response to his casual, "How's it going?" I burst into tears and said, "I just swept the kitchen floor for the 9th time!"

I realized that I needed to make some changes in order to emotionally survive this point in Sophie's life, so I stopped giving the other kids crackers and other unsafe foods, so that I didn't have to worry about crumbs as much. And of course Sophie began to understand her allergies as she got a little older and I stopped worrying so much.

Thursday, May 27, 2010

Doctors are not infallible...

Doctors are not infallible, and it's important that we know it even if they don't. The intuition of a father or mother is often worth as much as the education and experience a doctor has, and we should not be afraid to assert ourselves on behalf of our children.

About a year ago my oldest (previously non-allergic) daughter was on Augmentin for pneumonia and developed hives. The doctor at the emergency room told me to give her Benadryl and finish off the last 4 days of the prescription. I was a little shocked at this advice, but I thought for a moment and then said, "I guess as long as I have her sister's Epipen right next to me, I could give her another dose of this." The doctor left the room for a moment to consult with another pediatrician, and returned with a prescription for a different antibiotic.

This doctor's clinical knowledge initially interfered with her ability to make a reasonable decision in this situation. She had learned in medical school and in practice that children sometimes develop hives when they have a virus, influenza, or other types of illnesses. Most likely, my daughter's hives were caused by influenza, which is also what made her susceptible to bacterial pneumonia and led to her treatment with antibiotics in the first place. However, on the outside chance that the hives were from the Augmentin, any doctor worth his salt would change the prescription. Her attitude reminded me of the saying, "Shoot first, ask questions later." My preference, which was honored, is to avoid anything that might be causing the hives and later have an oral challenge.

Since we haven't done the challenge yet, I don't know if my daughter is really allergic to amoxicillan or not. But I am grateful that when I persisted, the doctor listened to my concern and gave my daughter a new prescription. Changing antibiotics certainly didn't hurt her, and continuing Augmentin could have been disastrous. When dealing with doctors, remember that they are people and they make mistakes too--if you feel uncomfortable, push until you get the answers you need. No one is completely infallible!

Saturday, May 22, 2010

Peanuts first...eggs next...then what?

Reading another allergy mom's post about her child's recent allergic reaction has sent me on a trip down memory lane. Sophie has been blessed to have had no serious reactions for the past 2 years. In fact, her last one was in the allergist's office when we did her peanut challenge in 2008.

Sophie was 6. Her recent tests showed a decline in the peanut and egg antibodies, and our allergist asked her about doing a couple of challenges. Initially, she declined. You may think this is funny, that she was calling the shots, but it is her body and she is the one who suffers if she can't eat what other people eat, so I am inclined to weigh her opinion heavily on these matters. He talked a little more (I had already said it was up to Sophie) and convinced her to try a peanut challenge. She stated that she would only be willing to do the egg challenge if she passed the peanut challenge.

We used peanut butter for the challenge. With the first few doses, she had no problems. No itchiness, no redness, no gasping. After we'd been there about an hour, she got a bigger dose--2 teaspoons if I remember correctly. She was okay for about 10 minutes after she ate it, and then she exploded. Well, not literally, but almost; she projectile vomited a couple of times in a row and then began a rapid-fire sneezing routine. I remember so clearly holding a trash can in one hand and a handful of tissues in the other, doing my best to help Sophie, while the doctor was scrambling around and said to me, "Well, this is 2 body systems, respiratory and digestive. That's anaphylaxis." We both looked at the Epipen sitting on the counter.

Sophie stopped vomiting for a minute, long enough to take some Benadryl. The Epipen stayed put. When she vomited up the Benadryl, the doctor fingered the Epipen and commented aloud that Sophie hadn't sneezed for a couple of minutes. Sophie's body began to calm down--maybe some of that Benadryl stayed in her long enough to do some good, or maybe she was the recipient of a miracle (well, I know that to be true either way), but she stopped vomiting and sneezing. Within an hour, she had taken both Zyrtec and prednisone without vomiting and we were able to go home.

That was 2 years ago, and yesterday Sophie told me that she has no intention of having an egg challenge, since she hasn't passed peanuts yet.

Friday, May 21, 2010

Pregnancy and Allergies

An email from a reader got me thinking today about when I was pregnant after having one child with food allergies. I was worried about the new baby developing food allergies like Sophie's. But I was terrified that she would have allergies that Sophie didn't have--and make our list even longer! I talked with our allergist and he gave me some recommendations based on the current research. Nothing is guaranteed, but it worked out for me--Maggie doesn't have any allergies at all. What are your thoughts on pregnancy and food allergies? Did you have a specific plan to avoid allergies? Did it work?

Saturday, April 3, 2010

You've come a long way, Baby!

For me, a huge piece of managing food allergies has been about managing anxiety. If I had the food allergies, my anxiety level would have been much lower; I am me, and I can trust myself to not eat something if I don't know what's in it. This is simply not the case with kids; when Sophie was really small I wasn't sure if she understood her allergies well enough to protect her if I wasn't around for some reason. Now that she's older, well, I still wonder about that.

When Sophie was first diagnosed, my food allergy anxiety (shall we just call it FAA for short?) was all based on three possible enemies:
1. Sophie
2. Other People
3. Me.
My FAA that Sophie would accidentally feed herself something that would hurt her led me to do a few really drastic things. When she was crawling, I swept or vacuumed the floor at least 12 times every day. I remember at one point my husband called from work at about 10:00am. When he asked me how I was doing I started crying and said, "I've already swept the kitchen floor 6 times!" During those early years, we completely eliminated a number of foods from our home, such as peanut butter, crackers, and most breads. As she's grown older (she is now 8 years old) some of these foods have made their way back into our lives, with no detrimental effects. We've come a long way, Baby!

I found the Epi-Pen to be my greatest ally in resolving my FAA that Other People (grandparents, siblings, friends, aunts, uncles, etc.) would feed Sophie something harmful. Whenever I absolutely had to leave Sophie with someone other than my dear husband, I taught the babysitter how to use the Epi-Pen. After doing this a few times, I realized that people were terrified of it! Teaching someone to use the Epi-Pen practically ensured that they would take no risks, since they didn't want to have to use it! Pretty soon, I started showing it to anyone who was even around Sophie, because something about needles really brings home the severity of food allergies.

Alas, I was most anxious about myself. With all of the terms to learn and information to assimilate in a critically brief period of time, how could I be sure that I wouldn't miss some ingredient on a label? Indeed, I did miss ingredients a few times--only to catch my error seconds before Sophie ingested the offending food. In one instance, I didn't catch it in time, and poor Sophie paid the price in vomiting. But it's been a long time--maybe even years--since I have made such an error. And as I have been more accurate, my FAA has decreased. I no longer wake up in a cold sweat from the nightmare in which I have temporarily forgotten Sophie's allergy to eggs and witnessed her poor body swollen and sick. I have a new nightmare: Sophie is now reading her own labels. She still lets me double-check her work, but for how long? When the time comes, will I be prepared to hand over the responsibility of keeping her safe? Will I be able to trust my precious child with her own safety? Will I be able to say, Sophie, you've come a long way, Baby!"

Saturday, March 20, 2010

I'm no doctor, but...

I'm not a doctor, but let's just say that I've learned a thing or two about allergies over the years. The things I have learned lead me to believe that allergies are essentially a massive immune system malfunction. Allergic response occurs when the body determines that a usually benign substance (like milk) is hazardous. The immune system builds up antibodies to the benign substance, and on the next exposure, the body responds. Whether the response is minor (a few hives) or dramatic (anaphylaxis) isn't relevant for the purposes of this discussion, the point is that the immune system (which is supposed to fight infections) is waging the wrong war.

So if allergies are essentially an auto-immune system disorder, how do they relate to other auto-immune disorders? Are people with allergies more likely to develop things like rheumatoid arthritis, Graves' disease, PANDAS, etc.? If so, how much more likely? Is it likely enough that people with allergies ought to be educated about other auto-immune disorders so that symptoms will be noticed and early diagnosis is more probable?

It's commonly believed that asthma, eczema and allergies are genetically linked, meaning that if the parents each have at least one of those conditions, then the children are likely to also have at least one of those conditions. Furthermore, children won't necessarily have the same condition as the parents. Does this mean that anyone with asthma or eczema is also more like to develop other auto-immune disorders?

And think about this: aren't most people allergic to something these days? So if most people have an allergy of some kind, does that mean that most of us are walking around waiting for the next auto-immune disaster to strike?

If the majority of people have an increased susceptibility to auto-immune disorders, then that's the new normal. Or maybe this is how we've always been. Maybe humans were never meant to eat such a wide variety of foods, travel to such a wide variety of places, and be exposed to so many potential allergens over a lifetime. Maybe we haven't yet adapted to our new mobility. But maybe we still can.

Thursday, February 25, 2010


I have had a couple of requests for a granola recipe. I have used this one for ages. The original idea for it came from a cookbook by Kathleen Daelemans called Cooking Thin with Chef Kathleen, but I have made a few of my own modifications.

10 cups oats or 8 cups oats and 2 cups puffed cereals (such as rice or corn)
1 tablespoon cinnamon
1 1/2 cups brown sugar
1/2 cup water
1 teaspoon salt
1 teaspoon vanilla

Preheat the oven to about 325.

Place 10 cups of cereal (oats or a mixture of oats and puffed cereal) in a very large bowl. Add the cinnamon and stir to combine well.

Put the brown sugar and water in a bowl and cook in the microwave for 5 minutes, or until it gains a syrupy texture. You will want a bowl that holds several cups of liquid since the mixture will bubble up while cooking.

As soon as the syrup is finished cooking, add the vanilla and salt and stir until the salt dissolves. When as much salt as possible has dissolved, pour the syrup over the oat mixture. Do not scrape out the syrup bowl--it is likely that a little salt will cling to the edges and it won't taste so great in your granola!

Stir the syrup into the oats mixture. When it is well combined, spread it onto 2 large, greased baking sheets (or baking sheets that are lined with a Silpat or parchment paper) and pop them in the oven. Bake for a total of 40 to 50 minutes, until you can just barely see the oats beginning to brown. Allow the granola to cool and then store it in airtight containers. I imagine you could probably store it for a couple of weeks at room temperature, although with 4 kids, this granola has never lasted much more than a day at my house.

If you like to have dried fruit in your granola, I suggest adding it after baking (otherwise the fruit will scorch). There are lots of great possible variations. A couple that my family likes include:
Add 1 tsp. powdered ginger with the oats and mix with 1+ cup dried cranberries after baking.
Add a mixture of raisins and dates after baking.

Other things you could try would be to add coconut or sunflower seeds to the oat mixture--remember keep your total at 10 cups--and/or try other spices and dried fruits.

Monday, February 8, 2010

Life is about...

Sometimes I feel like life might just be about driving the kids to the places they need to go. Most days I suspect that life is really about figuring out what to cook for dinner next. Ever since I started working on the Sophie Safe Food Guide, I thought that life should be about working on that. Whenever something new comes up with my health or my kids' health, I'm certain that life is really about managing health--allergies, endocrine system, strep throat, sinus infections, asthma, etc. But in the end I always realize that life is about balance.

I struggle to balance the needs of our 6 person household with my desire to have a successful business. Most days this struggle results in one of two things: either I work on the couch using my laptop while there are children snuggled in as close as they can get with me still being able to type, or I work late into the night, past the kids' bedtime, and mine as well.

I wrestle with managing the day to day requirements of the house while keeping up with my business goals: every day at 5:00 I feel panic surge through me as I realize that I must, once again, make dinner.

I wonder if I'm doing the right thing when I give Sophie an extra treat because she couldn't have what everyone else had at a party or event. Is it enough? Is there a better way to compensate for what she misses? Is it unfair to the other children?

And at school, with friends, at church, I debate about taking care of Sophie's allergies completely by myself, or asking others to make accommodations. I feel the constant need to balance her (and my) need for acceptance and friendship with the desire not to burden others. Do I ask her to "just make do" too often? Have my requests for others to adjust been too demanding? When it's an issue of safety, the question is easy--I won't put my child in danger for anyone's convenience. But often it's an issue of desire, not safety. Yet how often can a child's simple wants be denied before there is emotional damage?

I hope that I am balancing things in a way that will teach my children that through prioritization, they can accomplish great things. I hope that I am managing Sophie's allergies in a way that will help her understand how to accommodate others and be compassionate. I know that she feels the compassion of others as our friends frequently pack her a special little bag of treats for Halloween, or go to multiple stores to find cookies that she can have, or offer to make something Sophie Safe for the class Christmas party, or keep their pantries stocked with a handful of Sophie-Safe snacks for when she comes to play. I hope I can teach her to focus on the blessings of love and kindness that have come into her life because of her food allergies. I hope I can set that example.

Saturday, January 30, 2010


Today after playing with her cousins, Sophie cried in the car because while she was there they made non-safe brownies, and everyone had some--except, of course, Sophie! Over the past few weeks, she has angrily asked, "Why do I have to have food allergies, anyway?" She will mournfully say, "I wish I could have some of that." Her feelings regarding food have clearly shifted from reluctant acceptance to sadness and anger, even grief.

After nearly 8 years of living with food allergies, is she just now grieving her loss? Does it take a child 8 years to realize the mark of food allergies? To see the separation and limitations caused by this, dare I say, disability?

And is it possible that everything I've done for her is not enough? The research, experimentation,'s visits, eliminating pets, foods? Is it truly possible that my years of depression about food were not enough to save Sophie from her own grief?

Saturday, January 23, 2010

Sophie Safe Food Guide

In the early days of our journey with food allergies, I would wait until late in the evening to go grocery shopping. My husband stayed home with the kids and I went alone, standing for hours in a single aisle in the grocery store, reading label after label after label. When I was emotionally exhausted, I would take my meager findings to the checkout and pay, bring no more than a bag or two home. After a few weeks passed, having rested and regrouped, I would set out again to seek battle with the grocery store.

Many times in those days I wished that someone had built a database, a website where I could research ingredients in the comfort of my own home, at my own leisure, and be prepared when I went to the grocery store. And now we have built one--Sophie Safe Food Guide is now available for anyone to register and find foods that work for them. When you create an account with the Sophie Safe Food Guide, you can set up profiles detailing the dietary needs of members of your household. You choose the items that each person need to exclude from their diet, and when you search, the database will return items that are free from the things you're avoiding. For example, if you are allergic to tree nuts, salmon, and you don't want to eat things with saccharin in them, then the database will give you lists of items with no nuts, no salmon, and no saccharin.

Our Basic account includes 1 profile with unlimited allergens. Don't forget to check out the grocery list--mark the things you want to purchase and print out your list for the next grocery shopping trip. Check it out at