In fact, three to five years after completing an OIT study, Johns Hopkins University researchers said that many participants were more reactive to cow’s milk than they had been early in the course of treatment.

The team presented results from a follow-up study involving 32 children from two clinical trials in which they were fed tiny, then increasingly larger amounts of milk. These patients completed the milk oral immunotherapy, then underwent an oral challenge test for tolerance and were sent home with individualized instructions for daily milk consumption.

It turned out that 38 percent of the test subjects (12 children) who were thought to be desensitized were having frequent symptoms from milk three to five years after the trial had ended, while 22 percent had occasional symptoms. Only 25 percent of the participants were able to consume milk without symptoms. (The other 16 percent had ceased having milk.)

In terms of the type of reactions being experienced, 31 percent reported systemic symptoms (characterized as more than an itchy mouth or stomach ache) and 19 percent had symptoms serious enough to require an epinephrine auto-injector.

At a news conference at the AAAAI meeting, Dr. Robert Wood, director of pediatric allergy and immunology at Johns Hopkins, did not mince words: “Some of the more dramatic failures had looked like absolute successes in the study. They were tolerating huge amounts of milk; they were about as close to ‘cured’ as we could imagine,” he said.

The study shows that 22 percent of the children had returned to either milk avoidance or minimal consumption of it. “The main thing that I’ve come to believe is that they were not as protected as we believed in that they self-restricted [consumption] because they didn’t like the side effects the milk was putting them through,” said Wood.

So have the researchers lost hope? Not at all. It appears more a case of figuring out where the research goes from here for some patients who lose newfound allergy protection easily.

“Learning something that’s disappointing is why it’s called research,” Wood noted about the study. As he told Allergic Living in an interview: “To go from where we were 10 years ago, which was to say that ‘we probably can’t give food to a highly allergic patient safely at all,’ to say now that some patients are having extremely good outcomes, this leaves us with encouragement that the long-term potential is very real.”

Dr. Wesley Burks, one of the leaders on OIT research from the University of North Carolina, summed it up well when he said: “There are a lot of encouraging results, but there’s also a lot of work to be done. This isn’t really ready for treatment – we’re not there yet.”

There are some intriguing bigger questions on where research will head to get “there”. Allergic Living will be examining these issues in the Summer edition in a special report on food allergy treatment research. We hope you and your family will find it enlightening.

Read more news from the AAAAI meeting here.

See Also: Parents Exposing Kids to Their Allergens

For our cover article, writer Carolyn Black has an incredibly insightful article on the impact on some marriages of the day-to-day vigilance in managing food allergies and celiac disease. It includes stories of husbands and wives who are far apart in their approaches to managing children’s allergies – and does that cause stress! But this also turns out to be an issue with a later in life diagnosis of celiac or allergy (when a couple’s eating habits change overnight).

While studies have shown that quality of life suffers in families with food allergic kids, this is the first time I’ve seen couples speaking specifically – and so honestly and directly – about the impact on their marriages. Their stories are heartfelt and make you realize that when we speak of “allergy management,” what a journey that can be.

But what I love in this article is that Carolyn doesn’t just dwell on difficulties. She interviewed psychologists and parenting experts and shares the best of their advice for helping couples work as a team again. If food restrictions are in any way hurting your relationship, you’ve got to read this article.

I’m also so glad we’ll be publishing senior health writer Lisa Fitterman’s article on gluten’s effects on the brain. Lisa delves into the gamut of cognitive symptoms that those with celiac report: from headaches to insomnia and brain fog. But she goes even deeper – interviewing prominent U.K. neurologist Dr. Marios Hadjivassiliou to gain a greater understanding of his latest and groundbreaking research.

He is finding profound neurological effects in those with celiac disease who haven’t been diagnosed; it’s unlike anything we’ve known before. Dr. Hadjivassiliou wants to spread the word that “it’s imperative that we change the mindset about celiac disease and brain dysfunction.” AL mag hopes to help to that end with this article.

While there’s lots of thought-provoking reading, the AL team is also busy writing and photographing lots of great lifestyle features – to make the Spring issue an uplifting and inspiring read. There are many stories that I could mention, but as a hard drive full of editing awaits, I’ll just share a couple more.

• The lineup from our fabulous food team: New Food Editor Cybele Pascal offers an inspired selection of allergy-friendly, gluten-free Asian recipes. It was pure pleasure to “have to” test her Pad Thai (yes, allergen-free Pad Thai!!) at our food shoot. Delicious!

Senior Editor Alisa Fleming gets creative with brunch waffles and pancakes (no dairy, no gluten, no any top 8 allergens), and Associate Food Editor Elizabeth Gordon brings us outstanding chocolate cupcakes and cookies for spring.

• Just in time for spring allergies, we’ll tell you how to design a sneeze-free garden, and we’ve got amazing allergy-friendly gear for kids. There’s great advice from our expert columnists, including a terrific article from Gina Clowes on the broader implications of the Lesley University agreement on the disability rights of food-allergic students.

FYI, if you’d like to get this issue but haven’t subscribed yet, that’s easy to do online here.

I’d better get back to that editing. But I’ll be looking most forward to our readers’ feedback on the new issue, which will land in mailboxes about the first week of April. Feel free to send your comments to editor@allergicliving.com. We hope you’ll enjoy the issue.

warmly, Gwen

Here was the issue: Back in 2009 a few students at Lesley University in Cambridge complained that their civil rights were being violated under the Americans with Disabilities Act because the university made no accommodations in either the meal plan or other food services for celiac disease and food allergies. At least one student with celiac disease had to purchase the meal plan, though it didn’t have gluten-free options.

The Department of Justice thought the complaint had merit and investigated. The DOJ’s conclusion: “Food allergies may constitute a disability under the ADA.” The department specifically noted the damage that repeated consumption of gluten can do to those with celiac disease, “leading to vitamin deficiencies that deny vital nourishment to the brain, nervous system, bones, liver and other organs”.

The administrators at Lesley University, a private university known for its education and arts programs and a neighbor to ivy league Harvard University, could see the seriousness of the DOJ’s position. They decided to settle.

Under the agreement, announced with little fanfare at the end of December, Lesley U. said it would amend its food services policies to provide gluten- and allergen-free food options in its dining halls, work with affected students on individualized meal plans, allow pre-ordering of safe meals and set up a dedicated space for preparing and storing allergen-free foods. The food services staff are now undergoing training on allergy issues, and the university has agreed to pay the students who complained $50,000 in compensatory damages.

This is big-time accommodation and a big win for the food allergy and celiac communities. It serves notice that those on medically restricted diets have a right to eat where they learn without fear that their food will make them seriously, potentially dangerously ill. It acknowledges that students with allergies and celiac should be able to live in a dorm setting and rely on the food service personnel to have the knowledge and inclination to make them a meal that hasn’t been cross-contaminated.

But it’s not entirely clear yet how far-reaching the implications of the Lesley agreement will be. After the quiet release of this agreement, legal scholars, educators and others are now debating this.

To help understand the bigger picture of the Lesley U. agreement, Allergic Living columnist Gina Clowes is interviewing the senior counsel from the Department of Justice on this case and ADA legal specialists for the magazine’s Spring edition. I think readers will find it fascinating to learn more about this important precedent. I know I will.

Find out which ones are enriched with vitamins, fiber, iron and protein in the charts below.

Print them and bring them along the next time you go grocery shopping.

GF pastas available in the U.S.:

GF pastas available in Canada:

Shelley Case, RD, is an international celiac and gluten-free expert, a featured columnist in Allergic Living magazine and author of Gluten-Free Diet: A Comprehensive Resource Guide.

Related reading:
- The Celiac Expert: Comparing Gluten-Free Cereal & Oatmeals

I grew up in a huge Italian family where love was spelled F-O-O-D. About a year after my son was diagnosed with more than a dozen food allergies, I hosted Christmas Eve. Every table of my house was filled with pasta, cookies and candy. But unlike past family gatherings, this was not a happy holiday.

One niece roamed the house leaking her bottle of formula everywhere; another toddler left a trail of Honey Nut Cheerios. My sister fed her baby a jar of green pea baby food – the very food that had caused my son’s most recent allergic reaction – and left a dirty spoon on my kitchen table. My home became a minefield.

Although I didn’t say anything, my family sensed my tension and anger. They watched me march behind them, picking up napkins, wiping down tables and cleaning up cookie crumbs before my allergic toddler could get to them.

It wasn’t long before my sister confronted me. “You’re so uptight. No one feels comfortable here anymore.” My emotions spilled over. How dare they be mad at me! They were being insensitive and endangering my son’s health. I didn’t speak to my sister for months.

That was nine years ago. Today, I see things differently.

Back then, I expected my family to understand a lot more about food allergies than they did, and yet I never specifically explained to them what I needed. It’s our job to educate others on exactly what’s necessary to keep our children safe. We, not our relatives, have to establish boundaries and draw lines. Today, I put my son’s need for safety and inclusion and my own need for keeping a manageable stress level at the top of my holiday priority list.

Next page: Gina’s Essential Tips for the Holidays

What Are They?

Whole grains are the seeds or kernels of plants that are composed of:

• the bran, the outer seed layer and source of fiber, B vitamins and antioxidants;
• the germ, the part that sprouts into a new plant and contains protein, healthy fats, B vitamins, vitamin E and minerals;
• and the endosperm, the largest portion of the seed that is mostly starch and small amounts of minerals and vitamins.

Gluten-free whole grains include amaranth; buckwheat; corn; millet; pure, uncontaminated oats; quinoa; rice (black, brown, red, wild); sorghum and teff.

Getting Whole Grains on the Gluten-Free Diet

The typical gluten-free diet is built around white rice and baked products, cereals, snack bars and pasta – often made from white rice flour and starches (corn, potato and tapioca). If you see your own diet in that description, it’s time to change how you eat since these refined flours and starches do not contain the bran and germ. That means you’re missing out on important nutrients. By using gluten-free whole grains, you can boost the quality of your diet.

How to incorporate whole grains into your meals and snacks:

• Jump start your day with a hot cereal such as gluten-free rolled oats, buckwheat or quinoa flakes, cream of brown rice or cooked amaranth, millet, quinoa, steel-cut gluten-free oats or teff grains. Sprinkle with cinnamon, brown sugar or honey and top with fresh or dried fruits like sliced bananas, blueberries, mangoes, peaches, apricots and raisins.
• Another breakfast option is granola. There are many gluten-free granolas on the market. Or make your own using gluten-free oats, seeds (flax, sesame, sunflower, hemp, chia) and nuts (almonds, walnuts, pecans).
• Top yogurt with granola for a great snack.
• Dress cooked buckwheat, gluten-free oat groats or steel-cut oats, quinoa, millet, colored rice (black, brown, red), wild rice, sorghum or teff with a zesty salad dressing. Add chopped green and red onions, peppers and other favorite veggies, along with nuts and seeds for a hearty salad.
• Buy pasta made with amaranth, brown rice, buckwheat, millet or quinoa.

For more ideas about adding whole grains to the gluten-free diet see http://www.glutenfreediet.ca/img/WholeGrainHandoutFinal2012.pdf.

Next page: Cooking with Whole Grains

Here’s what parents of students at a Volusia County, Florida elementary school did in March 2011 when they were told that their kids would have to make this accommodation to ensure the safety of a first grader with a peanut allergy: they protested. They literally picketed, handed out flyers and called the media.

The uproar affected me deeply because a similar controversy brewed in my district several years ago – and it involved my son.

Before Daniel’s first day of kindergarten, I developed a plan with school administrators to keep him safe from his allergens. Although we made every effort to keep the impact on other students to a minimum, some parents saw the restrictions on certain foods in the classroom as an infringement on their rights. In fact, one mom was so miffed that she rallied a group of parents and they protested at several local school-board meetings, inviting the media.

School administrators went to battle for me, and in the end, not a single word of my son’s plan was changed.

Since that time, I have worked with thousands of allergy parents navigating the school system, trying to help others “get” food allergies. Here’s what I’ve found works – and what doesn’t.

Tell the truth. Never exaggerate. A significant portion of people still don’t believe that food allergies are real. When we say things like, “If she touches it, she will die,” it lessens our credibility. If the truth is, “If she ingests even a trace amount of this food, she could die without proper treatment,” then say that. The truth is frightening enough.

Be meticulous with your words and language. When we use analogies like the “loaded gun,” we may be written off as anxious or crazy. Most people simply cannot compare a sip of milk or a bite of a cookie to a loaded gun. It doesn’t matter if we’re right. It matters that they can hear us.

Share a story. I tried for years to explain food allergies to my sisters. But it wasn’t until I shared Sabrina Shannon’s story through her radio documentary “A Nutty Tale” that they truly understood. One sister called me immediately afterwards and said, “Oh my God. So this is what you are dealing with.”

Sabrina died from an allergic reaction to a trace amount of dairy on French fries served in her school cafeteria. There is no argument with this story. And every parent on some level can relate to the fear of losing a child.

Next page: On the same page with school officials