• There is no common definition of food allergy (as opposed to sensitivity or autoimmune disorder) and there should be.
• Despite elimination diets being the main treatment at this point in time, there is only one study of their effectiveness.
• Food allergies affect more than 2 percent but less than 10 percent of population.
• Breastfeeding, hypoallergenic formula, and probiotics can all help allergic infants have fewer symptoms.  Breastfeeding has the strongest effect, and there is a positive effect of maternal dairy product elimination for dairy allergic infants.
• There is no evidence of  any effect of maternal elimination diets during pregnancies.  (So you can stop feeling guilty about that peanut butter fudge ripple ice cream cone you kept craving.)
• The Top 8 Food Allergens = 50 percent of reactions (as opposed to 90 percent, which you will often read). This means people with “weird” allergies, like barley or celery, are a lot less “weird” than their doctors may lead them to believe. 

Chafen JJ, et al. Diagnosing and managing common food allergies: a systematic review. JAMA. 2010 May 12;303(18):1848-56.

Screen shot of the new Ap from Vistadec Inc.

I’ve been wanting this ap to be created for some time.  Now I can’t wait to try it out.

According to the manufacturer, you should be able to scan barcodes using your smartphone camera, and the program will have a personalized allergy alert for you. 

It is unclear if the app will search for less common allergens, or only the Top Eight plus sesame.

For more information, see My Food Facts.

(Now if only they could link this to the handheld scanners already in the grocery store…)

A word of caution.  One of the many, many brands was actually given to us by the GI clinic at our local children’s hospital.  The bottle said it was soy free.  The nurse had researched it and called the company who swore that it was soy free.  Gave it to my daughter, she had a reaction.  I called the company.  They swore that their Vitamin E was not based on soy, and after much questioning they gave me the name of the company that supplies their Vitamin E.  Five minutes on google established that the supplier’s Vitamin E was in fact made from soy.   I called the vitamin company back and told them this and they said “Well, we can’t keep track of all the ingredients from all of our suppliers.”  REALLY??  You can’t??

Sometimes no matter how much we research a product, it is not enough.

However, I am happy to report that we’ve found a new allergy free kids vitamin that actually seems to be, well, allergy free.  I can’t guarantee that it will work for everyone, but so far so good with us.  The only problem with them is they have no iron in them.   For that we use Kirkmann capsules — they make tiny, easy to swallow ones that are only 5 mg of iron.

Yummi Bears Organics — free of top 8 allergens, GF/CF, and no coconut or palm oil!  Also, they use vegetable based food coloring — may not be appropriate for folks who are allergic to those veggies, but good for kids who are sensitive to dyes.  Best of all — my kid actually likes them! 

http://yummibearsorganics.com/

Norman Rockwell

You don’t have to “make do” this Thansgiving.  You can have a fabulous dinner with not too much work, while still avoiding your allergens.  Now that’s really “freedom from want.”

Thanksgiving Dinner Menu

Butternut Squash Soup

Sage and Shallot Roasted Turkey

Mashed Potatoes

Wild Rice with Butternut Squash, Leeks, and Corn

Green Salad with Diced Granny Smith Apples, Dried Cranberries, and Pumpkin Seeds

Steamed Green Beans Tossed with Caramelized Onions

Mini Corn Muffins with Maple Butter (a whipped maple syrup spread that is dairy free)

Cranberry Sauce

Apple Crisp – toss in 1/2 cup of dried cranberries for some festive color

Not much specifically, butthey have a lot to say about health insurance, which affects all of us, especially those of use with higher health care needs.  Unfortunately, trying to figure out what all the political rhetoric actually means can be difficult.  I’ve turned to The Urban Institute, a non-profit, non-partisan research institution for an in-depth analysis of how the different plans will play out.  I’ve highlighted the information that is relevant to those of us living with and managing chronic illnesses, such as food allergies.  (If you’d like to read the full text of the Urban Institute report, see the link below, or check out each candidate’s web site for the full text of their health plans.)

The bottom line:

Sen. McCain’s health care plan would “make insurance less affordable and accessible for those with high health care needs” according to The Urban Institute.  The McCain plan would require more people to purchase insurance in the “non-group” market — that is, insurance that is not provided by an employer.  For people with a chronic illness, such as food allergies, this is potentially a problem.  Most states allow non-group insurers to deny coverage to people who are considered to have a high risk status (as in, having a known chronic illness.)  Sen. McCain proposes to solve this problem by funding state-sponsored “high risk pools” — insurance for those who are unable to find coverage in the private market.   However, about a third of all states do not have high-risk pools, so this option would simply not exist for residents of these states.  For residents of states with high-risk pools, high-risk insurance may simply be unaffordable.  McCain’s proposed funding for this system is not enough to cover the projected costs.

Sen. Obama’s health care plan is clearly better for people managing food allergies.  It would increase health insurance coverage so that all children in the United States would be covered.  Sen. Obama’s plan would the plan would prohibit insurance plans from denying coverage to applicants based on health status — meaning that people with chronic illnesses, such as food allergies, could not be denied health insurance because of their illness.  Sen. Obama’s plan would also make insurance more affordable for people with chronic illnesses, since it would require insurers to pool the risk of all the insured, rather than segment them into higher-risk or lower-risk pools.  (See below more my attempt to explain risk segmentation in English.)  In short:

“The Obama plan would ensure that every American citizen had a guaranteed source for purchasing or otherwise obtaining health insurance coverage, a situation that does not exist in the vast majority of states today.”                

  –The Urban Institute:  An Analysis of the Obama Health Care Proposal (with my emphasis added)

In addition, Sen. Obama’s plan focuses on the management of chronic conditions as a key to keeping health costs down and improving health outcomes.  (It’s a no-brainer to those of us who are managing chronic conditions that we spend more on health care.)  He proposes increased funding for research and education on chronic diseases.  Since allergies (food and environmental) are the most frequent chronic illness in children (according to the Allergy and Asthma Foundation), we can hope that this agenda will translate into more funding for fighting childhood allergies.

What is risk segmentation and why should I care?

Insurance works by pooling risk — you get enough people together and each of them pay a little bit of money into a pool, and then if any one of them needs the money (because an anvil falls on their head, for example, and they need to go to the hospital) the cost is spread around.   The way insurance should work is that those who are less likely to need a payout at any given time keep paying into the pool, because at some point in them they may become more likely to need the money.  (You never know when you might get hit by a falling anvil.)

The McCain plan would create a system of market segmentation in which the people least likely to need a health insurance payout (young, healthy people without chronic illnesses) would be put in a separate “segment” or risk pool and charged differently than those who are more likely to need a payout (older people and/or people with chronic illnesses.)  Some people who are very likely to need payouts from their insurance would not be able to buy it at all. 

Car insurance companies do this in a way — they raise your premium after you have an accident, if it is your fault.   If you have too many accidents or speeding tickets, you might get dropped from your insurance carrier.  But health insurance is different -  it is not risky behavior or poor decisions on your part that cause you to have food allergies.  Imagine if every time you needed to buy an epi pen ($110, with coverage!), your health insurance went up.  Imagine if your child was hospitalized for three days and the hospital bills were $45,000 (a not unreasonable amount these days) — and that the next time your health insurance came up for renewal, your premiums doubled.  Or your family was dropped from coverage and you were told to try to get insurance from your state’s high-risk pool. 

Risk segmentation is a very bad idea for those of use who are managing chronic illnesses.

So if I or someone I love has food allergies, who should I vote for?

No question about it, you should vote for Obama.  His plan is much more likely to ensure that you keep your health insurance, and that it remains affordable, whether or not you need it.   It is also more likely to translate into increased funding for research on food allergies, education about allergies, and a revamped health system that focuses on managing chronic disease.

Can you immagine an America where every child is covered by health insurance?  I can’t, actually.  But I’d like to live to see it.  

Run, don’t walk to your local polling place this year.  Don’t forget your epi pen. 

Sources:

The Kaiser Family Foundation:  Health 08

The New York Times:  On the Issues:  Health Care

The Urban Insitute analysis of 2008 health care proposals

Association of Health Care Journalists

Asthma and Allergy Foundation: Allergy Facts and Figures

You can comment here:

http://www.regulations.gov/fdmspublic/component/main?main=DocumentDetail&o=09000064806b7555

I believe that companies should be required to disclose all the ingredients of any product they sell.  Car makers have to know what parts they put into their cars, why can food and drug companies get away with “spices” or “natural and artificial flavors”?  I once called a drug company to find out more information about a specific listed ingredient (I wanted to know if it was corn-based) and was told that they had no way of knowing – that their suppliers just shipped them whatever was cheapest at the time, and they didn’t even know what they were using at any given point in time!  

Under current FDA rules, something you think may be a raw ingredient (for example, a bag of flour purchased at the grocery store) may actually contain multiple ingredients (for example, malted barley flour, corn starch, chemicals) that may or may not be listed in the ingredient list on the label.  This is compounded when the flour is made into bread and then sold.  In the chain of manufacturers, essential information is lost.

So, your screaming two-month old or your cranky toddler is not doomed to a lifetime of being labeled ADHD, or whatever the label of the moment is.  Her sensitivity will be an asset in the future, but only if you do your job well!  (Not to add any more stress to your life or anything!)

Read the Indiana University press release here.

Become an adovate.  Trust your instincts.  Don’t give up when a doctor blows you off, you know your child better than anyone.  We’ve spent countless hours dealing with doctors, teachers, friends, and family members who at best didn’t believe us and at worst blamed us for her symptoms.  (Be prepared for the ridiculous.  One highly regarded doctor at a prominent childnren’s hospital told us that the solution to her reactions, when she is in so much pain that she spends all day and night clutching her tummy and screaming in pain was to practice extinction, as in ”let her cry it out.”)  Keep a ring-bound notebook with all of your child’s medical records, notes from conversations with doctors and nurses, and test results.  Bring it with you every time you go to the doctor.  It will help you keep everything organized, and it will impress the doctor with the seriousness of your quest to help your child feel better.

Seek support.  Food allergies or intolerances are a chronic illness, and are incredibly stressful to manage.  Seek out people who will support you, better yet people who have been there and know what it is like to have a child with food allergies.   If you don’t have a local support group, try Kids With Food Allergies.  It is both difficult and important to maintain your social network after you’ve been diagnosed with food allergies because so many social activties revolve around food, restaurants, or alcohol.   Parties you used to enjoy may leave you feeling isolated.  Come up with fun things you enjoy doing with friends that don’t involve food.  Watch a movie, go for a hike, invite kids over at a non-mealtime to run through the sprinkler.  Or invite folks to your house for dinner.  People want to see you, but they are afraid of feeding you the wrong thing.   

Stay positive.  It is possible to eat well while avoiding your allergens, it just takes a little creativity.  And it does get easier with time.  Focus on the things you CAN eat, make sure you have special things sometimes.   It is actually easier and less risky to make things yourself than to search and search for prepackaged things that are safe for your family.  Remember that food allergies are only one part of your child’s life.

It would better describe our life together to say – my daughter cried five or more hours a day for the first two months of her life.  She was inconsolable, nothing I did helped, and I did everything I possibly could, including nursing her up to 14 hours a day.  Only at the breast did she quiet and seem content, and she nursed with a tenacity that I both loved and suffered from.  She would fall asleep on my lap and continue nursing while asleep.  To try to move her in any way would wake her, so I spent hours holding her sitting up while she nursed and dozed.   She could only sleep when she was on me – I discovered it was possible to sleep propped up on the couch with pillows wedged around us so she wouldn’t fall.  I never dipped below the surface of sleep.  I was constantly aware, even while dreaming, of my hands holding her on me.   

I could not set her down.  I don’t mean this in the sense of a starry-eyed new mother desperately in love with her infant, though I was that as well.  I mean that if I set her down, even for an instant, she began to scream, and she continued to scream until I picked her up again.   Occasionally I could hand her off asleep to another set of arms, but often she would wake, unhappy about where she found herself.  After the first few weeks even family members became unwilling to hold her while I showered. 

In the heat of the southern Indiana summer, I walked around and around my neighborhood with my daughter strapped upright to my chest in a sweat-soaked sling.  As we walked I would sing her a song composed in desperation one night.  It went like this “Podling, podling, podling, I’ll sing you a song.  Podling, podling, podling, you tell me what’s wrong.”  But of course she couldn’t. I obsessively read baby books.  Nothing in them seemed to describe the experience I was having.  Friends sent me books titled “The happiest baby on the block” and “How to make a baby laugh,” which tormented me further.  I tried everything in the books and my baby still cried for hours every night. 

I began to feel like I was a failure as a mother, that I was lacking some internal essence of mother-ness, so that even though I wore my baby in a sling for at least 4 hours each day, sang to her, played white noise, “slept” next to her all night, jiggled and bounced her, surrounded her only with super-soft 100% cotton, massaged her, and everything else I could think of, even though I did all these things I was lacking the touch of a mother, because I couldn’t make my baby happy.  I couldn’t even get her to sleep.   We discovered that if we swaddled her tightly in a baby blanket, she couldn’t thrash around so much and wake herself.  She could sleep for up to an hour if snuggled close to me.

Even given my limited experience with babies, I felt something must be wrong.  Her poop, the only output we had to go on other than the crying, seemed weird.  I took her to the doctor.  I told the doctor that in addition to the weird poop, she was nursing all the time and that I was desperate for sleep.  It wasn’t until months later that I would realize these are the things all new mothers say.  I didn’t realize I needed to quantify for the doctor:  Saying: “She is nursing 14 hours a day.  I am getting less than 4 hours of sleep a day” might have gotten me some attention.  

One day in late August some friends stopped by.  We decided to order some Indian take out and eat dinner together.  This mundane occurrence would turn out to be not only the last time these particular friends stopped by, but the last time anyone stopped by our house for the next few years.   It would be our last dinner with friends, our last Indian food, the end of a life in which dinner gatherings were impromptu and didn’t involve packing like we were going back-country camping. As we started to eat, my daughter started to scream.  It was early for the screaming to start for her, and seemed unusually severe.  Bouncing had no effect.  She would nurse for a few moments, and then pull away and scream some more.  Her face was completely red, her body rigid.   We continued to trade off – one person trying to calm her in the other room and the other trying to maintain a normal conversation with our guests, who were shifting around in their seats and looking towards the door.  My partner called me from the other room, and I went to join her.  My daughter was on the changing table and she had a huge raised red welt on her bottom.  Oh, we thought – diaper rash. 

Late that night, after almost 8 hours of screaming, I looked up diaper rash in the baby books.  The description didn’t match.  I kept reading until I came to something called an “anal ring rash” which sounded exactly like my daughter’s rash.  It was caused by food allergies.  As I read more, I found that mucousy poop was something to be concerned about, and was another sign of allergies or food intolerances.I stopped eating dairy products.  The rash continued.   I stopped eating tomatoes, a hardship for me in late August in the midst of a bumper tomato crop.  The rash went away, but the crying and nursing and weird poop continued. 

We went back to the doctor, and another doctor.  The doctors’ responses were that newborns have weird poop   I told them her poop looked like egg-drop soup and that she seemed to be having diarrhea.    But she’s seven weeks old, we said, she’s not a newborn anymore.  And I stopped eating dairy products and she still seems sick.  One doctor said “Well some babies are allergic to their mother’s milk.  You might try formula and see if it gets any better.”   I went home in tears.

That afternoon I was checking my email, standing next to the buffet with the laptop on it while my daughter dozed restlessly upright in the sling.   I started searching on the internet for something, anything to help.  I began reading a breastfeeding bulletin board.  I posted a desperate message saying that my baby was nursing 14 hours a day and I thought I wasn’t going to be able to keep nursing.  The next day, there was a message for me that said “Do you eat a lot of soy?”  I responded yes – I’d had soy milk on my breakfast cereal, a soy yogurt for a snack, some tofu at lunch… actually, soy at  every meal.  I was a lactose-intolerant vegetarian, after all.  I needed soy to stay alive, I couldn’t give it up.  The nurse on the bulletin board told me that my description of my daughter sounded like a baby with food allergies and that I should try an elimination diet. (Note: I do not condone accepting medical advice from stangers on the internet.  This story is meant to convery my desperation, not to suggest this is a reasonable way to go about getting medical help.  Please don’t follow my example!)  I eliminated the top eight allergens from my diet.  I ate beans and brown rice and steamed vegetables and a lot of hummus and carrots.  That was all I could think of to eat in my fog of sleep deprivation.  Two days later my daughter stopped nursing so much and began sleeping almost like a normal newborn.  Within a week we stopped having to straightjacket her in baby blankets to keep her asleep.  The crying got better.  I started to feel like a capable mother who could actually soothe her crying baby.Things were hardly perfect, and she was still far from normal, but she began to sleep without nursing to stay asleep.  I still had to hold her all the time, even while sleeping, but she seemed to be in less pain.  It took months of food diaries and trials to isolate the problem foods (and actually we are still discovering new allergies, years later), but we eventually found she was allergic to soy, dairy, nuts, peanuts, eggs, black eyed peas, black beans, and lentils. (These were later confirmed by skin pirck testing.)  She was allergic to my entire vegetarian diet.    

Having a baby changes everything.  But what if that baby is sick?  Then it turns your world upside down. 

Our lives are not what we thought they would be post-baby.  My daughter is now three and still relies on breastmilk for her main calcium and protein source.  I haven’t been away from her for more than three hours in the last three years.  I haven’t been able to go back to work, even part-time.  My partner and I haven’t gone out to dinner together since the night before labor was induced.  For the first two years, she was sick two or three days out of each week, which meant at least 48 hours of sleepless screaming.   The first time she “slept through the night” (the medical definition of five hours) was when she was almost three. 

Children are never what you expect them to be.  But some children stretch their parents’ resources more than others.  Several research studies show that food allergies have a huge impact on quality of life and stress levels of the entire family.  It has helped me to conceptually frame food allergies as chronic illness.   Adapting to a chronic illness involves going through the normal cycle of grief (denial, anger, bargaining, depression, acceptance) similar to adapting to the loss of a loved one.  Even if you have the smartest, cutest, most wonderful child in the world there can still be an element of sadness or loss of your previous “normal” life.  Part of adapting to food allergies is finding a new normal for your family.

By JENNIFER ROMOLINI

Published: July 25, 2007

The NY Times Dining and Wine section notes the growing options for gluten-free diners in New York.  There’s also a dining guide, a recipe for gluten-free breadsticks and links to several gluten-free blogs.  It is so nice to see the mainstream press covering food that people with sensitivities and allergies can eat.