Oral Food Challenge for Milk: Passed (My Final Blog Post)

Milk food challenge
Last month, Swissinfo.ch published an op-ed I wrote about living with food allergies. Here’s an update to that piece and my final post on this blog:

I have good news! My 3-year old son recently had his seventh oral food challenge—this time for cold cow’s milk. According to his pediatric allergist, he “passed” the test. Going forward, he must consume no more than 150 ml of milk every day for the next 3 months.


Evaluating the Results

Similar to the results for my son’s food challenge for raw egg, the little guy broke out in hives around his mouth almost immediately after the first dose of cold milk. After each subsequent dose (five in all), I made sure to wash his face with cold water. Thankfully, the hives lessened, but midway through the test, my son’s demeanor seemed to change a bit. He started to look tired, laying down on the bed. I was sure the test would be a failure.

Then another food allergy parent, who was also at the hospital monitoring a food challenge, pulled out an iPad. My little guy perked up, and we seemed to be back on track. All other symptoms seemed normal—blood pressure, heart rate, etc. We continued with the test.

For the last dose, the nurse kindly mixed the milk with Caotina (a popular Swiss chocolate powder for making hot cocoa). My son used a straw and slurped it up in record time. He was happy and back to his normal rambunctious self.

When it was all over, my son’s pediatric allergist declared the test a success, describing his current condition as atopic dermatitis (i.e., eczema) with a contact reaction to milk. Apparently, he no longer has a true food allergy to milk. Even though he can safely consume milk (at least in small doses, to start), his skin can still react when it comes into contact with milk.


Next steps…

At this point, my son doesn’t have any food allergies. The allergist told me it’s no longer necessary to carry along two epinephrine auto-injectors, everywhere we go. He needs to maintain his daily dose of milk, to avoid recurrence of the allergy. It’s what we’ve been waiting and hoping for since we first learned of his milk allergy in 2012. I still can hardly believe it.

Given these latest developments, I will no longer maintain this blog. Our son’s food allergy journey has ended (fingers crossed!), but I know it continues for so many others. If you ever have questions about living with food allergies, please don’t hesitate to send me an email. I’m happy to try and help.

I want to say a huge thank you to everyone who has been reading Dairy-Free Switzerland and sharing your advice and kind words. I started this blog as a virtual support group because I didn’t know anyone with food allergies in Switzerland when we moved here nearly 3 years ago.

It’s been such a pleasure connecting with you all and learning from your experiences. I’ve heard from so many wonderful people living with food allergies both here in Switzerland and around the world. Also, I have to mention all the other food allergy bloggers out there who’ve helped me along the way. Your support has been invaluable.

As always, I hope you get some good news about food allergies too—whether it be outgrowing them, participating in a clinical trial or hopefully, one day there will be a cure!

Finally, if you’re looking to reach out to others living with food allergies in Switzerland, please contact the aha! Swiss Allergy Center or check out my recent blog post on Swiss support groups.

Many thanks, and best wishes to you all!

-Heddi

P.S. I will still be running the Royal Parks Foundation Half-Marathon in London this fall to raise money for Allergy UK. For more information and to make an online donation, please check out my JustGiving page. Thank you so much!

P.P.S. If you’re interested in continuing to follow my cooking and baking adventures in Switzerland, I’ve started a new Swiss food blog: Cuisine Helvetica.

Homemade Dairy-Free Chocolate and Marzipan Penguins for Valentine’s Day

The professional version of chocolate-marzipan penguins

Our local chocolate shop always makes these cute little chocolate and marzipan penguins for Valentine’s Day. This year, I decided to tackle a homemade version.

After my son’s successful food challenges for eggs and almonds last year, marzipan is one of my new favorite ingredients (remember the Swiss Stollen at Christmastime?). Even thought it’s a major improvement, his milk allergy still prevents him from enjoying store-bought chocolates at this time.

To prepare for my confectionery experiment, I bought some dairy-free marzipan and food coloring. After shaping the penguins’ bodies and wings out of the marzipan, I spread some melted Enjoy Life Foods chocolate on their backs. Then, I dotted some chocolate on small drops of powdered sugar icing for the eyes (they seem a bit scared, don’t they?). My family of penguins certainly look homemade, but they taste really good, and the kids are excited to try them on Valentine’s Day.

My very homemade-looking penguins

If you’re looking to make some allergy-friendly Valentine’s Day treats, here are some recipes I’ve shared during the last few years. All of them are dairy-free, egg-free, peanut-free and tree-nut free.

And, for another super-easy and no-bake recipe, check out Allergy Shmallergy’s Sweet Strawberry Hearts.

What allergy-friendly treats are you planning on this year for Valentine’s Day? Please share your suggestions and recipes by leaving a comment below. Thanks so much! 

Treatment Stopped: No More Milk

I’m disappointed to report we’ve stopped administering what seemed like a promising treatment for our son’s milk allergy. No longer does he receive a small daily dose of cow’s milk mixed in his soy milk. Working with our allergist, we decided not to proceed with this new treatment. For me, the risk was too unknown, and the benefits weren’t guaranteed.

DSC09790


The First Four Days

On the Saturday following my son’s food challenge, I mixed 10 mL (2 teaspoons) of cold cow’s milk into his morning glass of soy milk. The plan was to give a daily milk dose for one month’s time, and if all went well, increase the dosage by a certain amount, as recommended by our allergist. He drank it up without noticing any difference.

Not long after, we noticed red raised hives developing around his mouth. As the days progressed, we noticed the hives increasing—not enough to warrant an antihistamine, but more than what appeared after the same dosage of milk during the food challenge.

Each day the milk dosage became more and more stressful for me, even though I knew the little guy could tolerate a large quantity of milk. You can never predict the severity of an allergic reaction, which could be life threatening. Furthermore, the onset of such a reaction can be “deceivingly mild,” as outlined in our epinephrine instructions.


Not a Routine Treatment

On what would have been day 5 of his treatment, my son had cold symptoms—“le rhume” was making its way through our household. Our allergist advised us not to give him any milk when he’s sick, so we skipped the dosage. At about this same time, I started reviewing abstracts of various studies and checking in with others to find out about their experiences with this treatment. I had heard about oral immunotherapy before, particularly from all the discussion surrounding the recent New York Times article. Were we doing oral immunotheraphy?

After checking in with my son’s allergist, I learned we were instead using a practice referred to as specific oral tolerance induction (SOTI). Similar to oral immunotherapy, SOTI involves a patient consuming increasing doses of an allergen in order to build tolerance (I’m still learning about the similarities/differences between these various therapies, a comparison of which is a topic for another blog post…).

Our son’s allergist said SOTI is used quite frequently in Vevey, Lausanne and Geneva, with great caution used to determine the dosage amounts given at home in order to prevent a systemic reaction. As such, we felt comfortable going forward with the treatment. However, I started seeing things that raised more questions for me, like the current US guidelines for clinicians, published in 2010 by an agency under the National Institutes of Health.

“There is no evidence that unintentional or intentional exposures to the food allergen alter the natural history of the FA.” –Guidelines for the Diagnosis and Management of Food Allergy in the United States: Summary of the NIAID-sponsored Expert Panel Report, 2010 (p. 9, Sec. 3.7).

To find out more, I contacted a Geneva-based allergist via email that’s also familiar with SOTI. According to him, it’s not yet an established treatment, but it’s currently under investigation. I also spoke with our former allergist in the US. He does not administer SOTI in his practice and said it generally does not occur outside of a funded study. He also told me a recent study found a potential link between desensitization practices and eosinophilic esophagitis (it may have been this study). Finally, I reached out to some other food allergy parents via Facebook, one of whom shared information about a study I remembered from earlier this year, which indicates the success of oral immunotherapy may reverse over time.

Given our son’s reactions during the first four days of the SOTI treatment and what we’ve subsequently learned about this new treatment, along with emails back and forth with his allergist, we’ve stopped giving him milk.

Please note: I am not a medical professional. While this wasn’t the right treatment for my son at this time for a number of reasons, it may be in the future, as further research provides more data about its effectiveness. Also, our son’s allergist has been great and so very patient with me as I ask question after question…


Looking on the Bright Side

While I wish our son could have continued with this treatment, I was relieved to give up the stress and fear of his daily milk dose—even though it was low-risk with such a small amount. Plus, as I’ve written before, the food challenge gave us good news by showing that our son has a relatively high tolerance for milk. According to our allergist, this means he can now safely consume food products with the “may contain traces of milk” warning. For example, Oreo cookies in Switzerland fall under this category. More good news, right?

While it’s back to the status quo of living Dairy-Free Switzerland, hopefully in another year we’ll have some better news. I think we still have so much to be thankful for.

Milk Food Challenge: Bad News, Good News

Thanks to everyone for your support and advice. Our son’s food challenge for milk was held yesterday at a nearby hospital. We had mixed results, but we’re choosing to focus on the good news, including the small changes we’ll be making to our son’s diet.

Unfortunately, the little guy had an allergic reaction to milk. While this was uncomfortable for him—his face, neck, stomach and back became and red and covered in itchy hives—a small dose of antihistamine eventually cleared up his reaction.

Now for the good news… During the food challenge, our son consumed a relatively large quantity of milk: approximately 280 mL. While he experienced an allergic reaction, it did not occur until late into the test. Therefore, our allergist wants us to begin introducing a very small amount of cow’s milk every day for the next month, and to continue increasing it over time. If all goes well, we’ll repeat the food challenge in one year.


Our Morning at the Hospital

For those looking for a more detailed account of our son’s food challenge for milk, here’s a breakdown of our morning:

A gloomy morning drive on the way to Vevey

A gloomy morning drive to the hospital

7:55 AM – Our son vomits in his carseat about a block or two from the hospital! It sounds like I’m making this up, doesn’t it? He only had water to drink that morning. I handed him a water bottle when we left home, and he may have had too much on an empty stomach? At this point, I thought our allergist would reschedule the test. You have to be healthy for a food challenge. No sick kids allowed.

8:05 AM – We arrived a little late. I explained my son’s vomiting to the nurse and doctor. They checked him out, and he seemed fine. The test is still on!

My son began the food challenge with a small dose of cold milk. About 10-15 minutes later, we noticed two small red patches below his bottom lip.

I mistakenly thought the test would be stopped, but we kept going. Our allergist said that the redness could indicate a contact reaction and not an allergic reaction. As such, the test should continue.

So, he received another larger dose of cold milk, and then three doses of petit suisse with fruit. After he finished his final dose, the red patches remained around his mouth where he had contact with the milk.

A potential hive also appeared on his stomach. He has such sensitive skin, red patches are not uncommon. It was difficult knowing for sure whether it was connected to the milk.

The food challenge menu: cow’s milk and petit suisse

The food challenge menu: cow’s milk and petit suisse

To clear up any uncertainty, our allergist recommended we give our son another large dose of milk—an entire pot of petit suisse (50 mL). He gladly gobbled it up. I felt very uncomfortable feeding him so much, but hopeful at the same time.

11:15 AM – I noticed a more pronounced hive on my son’s stomach. Not long after, he started scratching around his armpit. Then, his entire stomach broke out in red patches and a few raised hives. His back started in next. At some point, his ears turned bright red. The red patches around his face became more pronounced.

Red patches and hives on our son’s back

Red patches and hives on our son’s back

After chasing around all morning, at this point in the test our little guy was uncomfortable and happy to lie down. When the allergist asked if he was okay, he quietly said, “No.” The nurse gave him an antihistamine, and we waited another hour before the redness finally cleared up.


Test Results and Next Steps

We are so thankful he did not have an anaphylactic reaction. When I asked, our allergist said she could not rule out the possibility of anaphylaxis for our son. We still need to keep EpiPens (epinephrine auto-injectors) on hand at all times, just in case.

The good news is that because his reaction did not occur until late in the test, after he had consumed a relatively large dose of milk, our allergist said we could start introducing a daily dose of milk at home. For the next month, and every day, he can have either:

  • 10 mL (2 teaspoons) of cow’s milk;
  • 4 grams of petit suisse; OR
  • 10 grams of yogurt.

He can also have real butter on bread or in vegetables, as butter apparently contains a small amount of milk protein (see the description for “Dairy Butter” from Go Dairy-Free). In addition, product labels that read “may contain traces of milk” are now okay.

12:45 PM – We strapped everyone into the car and drove home. The boys slept in the backseat.

Driving back home, the sun breaking through the clouds over the lake

Driving back home, the sun breaking through the clouds over the lake

Today, my son will have 2 teaspoons of cow’s milk for breakfast. While it’s not an omelet with cheese just yet, I will rejoice in this small victory. Bon week-end everyone, and thanks again for your support.

Milk Ingredients: French, German and Italian Translation

Our local Swiss allergist recently gave us a list of milk-based ingredients in French. To the extent it might be helpful, I’ve shared her list below, along with the German and Italian translations.

DSC07552

Milk, Lait, Milch, Latte

First, these products and ingredients traditionally contain milk, unless otherwise specified (e.g., soy-based products):

English French German Italian
Cheese Fromage Käse Formaggio
Yogurt Yoghourt Joghurt Yogurt
Cream Créme Sahne Crema
Butter Beurre Butter Burro
Ice Cream Crème glacée Eiskrem Gelato

In addition, the following ingredients indicate the presence of milk:

English French German Italian
Milk, milk powder Lait, poudre de lait Milch, milchpulver Latte, latte in polvere
Skim milk, skim milk powder Lait écrémé, poudre de lait écrémé Magermilch, magermilchpulver Il latte scremato, latte scremato in polvere
Milk proteins Protéines lactiques, protéines de lait Milchproteine Proteine ​​del latte
Evaporated milk, Condensed milk Lait évaporé, lait concentré Kondensmilch Latte intero concentrato
Whey, whey powder, or lactoserum Petit-lait, poudre de petit-lait or petit-lait en poudre; lactosérum, poudre de lactosérum Molke, molkepulver, lactoserum Siero di latte, siero di latte in polvere
Milk solids Matière sèche du lait Milchfeststoffe Latte solidi
Lactose Lactoses Laktose Lattosio
Lactalbumin Lactalbumine Lactalbumin Lattoalbumina
Casein Caséine, caséinates Kasein Caseina
Milk curds Caillé Milch quark Latte cagliata
Animal proteins, animal fat Protéines animals, graisse animale Tierische proteine, tierische fette Le proteine ​​animali, grassi animali
Concentrated butter Beurre concentré Butterfett Burro concentrato

This is a work in progress… If you have any suggestions for additional milk-based ingredients that should be added or corrections to the translated terms, please leave a comment below or send an email to dairyfreeswitzerland@gmail.com.

Thanks for your help!

Updated: March 3, 2013

A Close Call: Allergy Label Omission

We had a close call last week. I almost fed my dairy-allergic son some store-bought bread containing milk proteins.

These mistakes can happen so easily, which is why I must always be alert. At 20-months, my son is already at an age where I’m watching him constantly (he’s a climber!), but I also have to be extremely aware of everything he eats.

Food label reading is like my part-time job these days. Especially now that I’m looking for products that don’t contain milk or eggs, but may contain traces of peanuts and tree nuts (but not almonds). Sounds ridiculous, doesn’t it?

Because of this time-consuming task, as I’ve mentioned before, I prefer shopping at Coop. The Swiss grocer has excellent allergy labels for their store-brand items. However, this recent incident reminds me that the allergy label should only be used as an initial screening tool. Nothing should replace reading (and in my case, translating) a product’s entire ingredient list.

Store-Bought Bread for After-School Lunch

On the way to school, we stopped at the grocery store to pick up food for lunch. I grabbed some bread I hadn’t seen before: Naturaplan bio Couronne croustillante. The Coop allergy label only listed “gluten,” which is A-OK for us. I also picked up a familiar baguette for French toast the next morning (we absolutely love Food Allergy Mama’s egg/dairy-free recipe).

Coop's Couronne croustillante bread (a "crisp crown")

Coop’s Couronne croustillante (a “crisp crown”)

Back at home, I buckled my son into his high chair and handed him a piece of the new bread, putting my full trust and confidence in Coop’s allergy label. Seconds after handing him the bread, my instinct told me to review the ingredient list, just to make sure (something I really should have done and usually do at the store).

During my quick scan of the ingredients, “protéines lactiques” (i.e., French for “milk proteins”) immediately caught my eye. Without hesitation, I grabbed the bread from my son—much to his dismay—washed his hands and face, and gave him a piece of the safe baguette.

Ingredients and allergy label in German, French and Italian

Couronne croustillante – Ingredients and allergy label in German, French and Italian

Let me stress—everything was fine. Nothing bad happened, and maybe if my son had eaten the bread, he would have only developed a few hives. At the same time, it could have been a lot worse, but I’m trying not to think about it.

Reaching Out to Coop

I ended up calling Coop and speaking to about 5-6 different people—my limited French and nonexistent German is largely to blame—until I got the right one. My kids were chasing around, there was an echo, and English was not the first language of the person on the other end, but he seemed to say Coop had done everything they were supposed to, and I would receive some literature in the mail about their food labeling requirements.

After feeling frustrated by the call, I ended up emailing a few other folks, including our allergist and the aha! Centre d’Allergie Suisse. Both indicated that Coop should have listed milk on the allergy label. So, I contacted Coop a second time via email, and in less than 24 hours, I received this response on February 15:

Thank you for your e-mail.

You’re right, on the allergy label of the Naturaplan bio “Couronne croustillante”, the information “includes milk” is missing. The sale of the bio “Couronne croustillante” has already been stopped. It will return in our stores, when the allergy label is completed.

Thank you very much for your attention and your tip!

Yours sincerely,

Coop

I thanked Coop for their response, but also mentioned I had just been to one of their stores, and the bread was still for sale on the shelf. Here’s what Coop had to say:

I just asked our bread-specialists about this couronne croustillante. There should be a marker or a poster with the information “includes milk” beside the couronne croustillantes.

In the next few weeks there should be a new bag with the right an [sic] complete information.

Kind regards,

Coop

Today, I saw that our two Coop stores downtown didn’t have the bread in stock. I’m glad the company is correcting this error, so that other people won’t make the same mistake I did.

Food Label Reading Continues

I want to make this clear—Coop did not break any Swiss laws when they forgot to add “milk” to their allergy label. The ingredient list clearly indicates “milk proteins” as an ingredient, so any responsible parent would have caught that at the store and put down the bread.

While I consider myself a responsible parent, I make mistakes. When I’m tired and running through the grocery store with my kids, I may miss something on an ingredient list. That’s why I love Coop’s allergy labels.

Unfortunately, I put too much trust in that Coop label last week, and I didn’t complete my due diligence by reading the entire ingredient list in advance of feeding that bread to my son. I did end up reading it just in time, but my mistake (not Coop’s error) continues to haunt me—as it should.

This incident reminds me about the importance of carefully reading (and re-reading) every food label. I hope it helps remind others too.

There’s Milk in the Sausage?

Dry-cured sausages at our neighborhood grocer

While there are many obvious dairy products to avoid when you have a milk allergy (e.g., butter, cheese and ice cream), some are not as obvious (e.g., sausage and hot dogs). Being in Switzerland, sausage is everywhere, particularly on the German side of the country. Luckily we’ve found some good dairy-free options, including dry-cured salamis and fresh sausages.

Nevertheless, I got into an argument with my husband on Sunday morning over the sausage he prepared for breakfast. He was getting ready to serve it without having done a Google Translate of its ingredients. As I typed in the French ingredient list, the one that caused alarm was delta-gluconolactone. Every time I see an ingredient with “lact” in the word, I assume it’s dangerous for my milk-allergic son.

We ended up skipping the sausage for him, to be on the safe side, until we could do more research. Especially because my initial Internet search found some conflicting evidence. Upon further review, we discovered that delta-gluconolactone (a.k.a., glucono delta-lactone) is not a milk product. So, the sausage turned out to be completely safe.

We knew it would take more time to review food labels here in Switzerland, given the four official languages. However, many of the challenges we face deciphering these labels are similar to those we had back in the United States. Milk and milk proteins can be hidden in lots of foods. For this reason—and because of my son’s other allergens, we generally prepare foods with short or no ingredient lists. Luckily, we’re able to make an exception for Swiss sausage.

For more information about “hidden sources of milk,” check out FAAN’s milk allergen information. Go Dairy Free also has a more complete Dairy Ingredient List. You’ll notice that glucono delta-lactone shows up under the heading, “Surprisingly Dairy Free.”