Baked Milk Dosing, Domino's Pizza and Fenugreek

I have some nice news to report for once: my son ate his first Domino's Pizza last night.

As I've mentioned before, my son passed a baked milk challenge last summer. Even though he ate a milk CUSTARD during the challenge, we've had a lot of trouble getting our heads around what's required to dose him with baked milk each day. To complicate things, he seems to be able to tolerate baked milk in most foods, but baked cheese definitely still causes a reaction.

After we learned that some things will still cause a reaction (although all have been relatively minor), we lost our enthusiasm. Since we need to be prepared for reactions at any time, we have to only dose after school and far enough away from bedtime that we can account for biphasic reactions. That means his milk has to be done as soon as he gets home from school, while my husband is still at work. The hospital is 45 minutes during rush hour.

After we were scolded by the doctor for not keeping up with this, we've been trying to figure out how to ramp up our tolerance for anxiety along with his tolerance for milk. The daily dose has become Pepperidge Farm cinnamon bread. It has so little milk in it that he's had no trouble at all.

A few weeks ago, I discovered that Domino's actually offers both a pizza crust (thin) and sauce (plain) that are milk free! A year ago, we would have never considered this because of all the cross-contamination issues. However...with baked milk cleared, we gave it a shot. I'm happy to report he had no problems, although my son did comment "your homemade pizza is SO much better." Score one for mommy! But...having a delivery pizza option is one more important step toward independence at college.

Is it always risk free? Well, no...because if someone contaminates it with raw cheese and the dose is enough, he could still have a reaction. The hope is, though, that the baked milk dosage will some day also raise his tolerance to raw milk, so the small cross-reactions don't occur any more. Time will tell.

One other important note I wanted to make (and will just tack on to this column since it's a catch-all) is about fenugreek. Over the last several years, I've noticed a trend in food allergy deaths that occur in Britain: adults who clearly knew they had a peanut allergy and were generally very careful about it. The thing these deaths had in common? Carry-out curry.

Cross-reactivity between fenugreek, a spice used quite often in Indian dishes, and peanut is something that has only recently been studied and not well communicated. I'm afraid people are dying because they are unfamiliar with the high level of cross-reactivity between this herb and peanut. Make sure you know the ingredients in your curry spices! 

"Total Avoidance": The Best Chance to Outgrow a Food Allergy?

I think there's a myth that's done a lot of damage to our community: Total Avoidance.

If you've been in this rodeo for any amount of time, you probably know what I'm talking about. You see statements all over the web that say "total avoidance of an allergen gives the best chance for a child to outgrow." The theory seems to be that the body somehow needs a rest from the allergen to "forget and reset."

I haven't been able to find the direct source of this myth, other than the statement that has been AAAAI policy for years: "there is no current treatment for food allergy: the disease can only be managed by allergen avoidance." (If anyone has a source, I'd love to see it.)

When my son was young, we didn't practice Total Avoidance. We read the ingredients and gave him food based on those ingredients, end of story. We even used to cut the (milk-containing) breading off chicken nuggets in restaurants, and take him out for sorbet at places where we just asked them to rinse the scooper. He seemed to have a fairly-high threshold to most of his allergies. Yes, he got stomach-aches or a tingling mouth or "that feeling" in his throat on occasion...but it wasn't anything major, so we did it.

After the incidences I'd described in other posts (food allergy reaction, idiopathic anaphylaxis) we hunkered down and got educated. We read books. We found on-line communities and off-line support groups. We learned the Gospel: total avoidance was necessary, not just to avoid reactions but in the hopes of outgrowing.

It's easy for me to look back now and see that there was little evidence for this, but 12 years ago things were not so clear. Plus, this belief fed right into what I WANTED to believe. I was scared - terrified after his new allergies developed - and I wanted some control over things. Total Avoidance was a "truth" that felt emotionally right to me. It gave me control over something that felt completely out of control.

We quickly learned that Kosher symbols could be used to determine whether foods were produced on a milk line. It didn't matter if the foods contained milk, or if the line no longer even ran milk (as is the case with Oreos)...we avoided anything with a UD. And really - if we were going to control for milk, why not other allergens? We started making the calls. Calls to hundreds of manufacturers over the years, resulted in crazy direction about foods that were produced in the Ohio factory on Tuesdays when the moon was full, but in Indiana on Fridays when it wasn't.

There is no end to the slippery slope of avoidance. There was always a public surface that might be contaminated, or a child who had just eaten peanuts 10 feet away, or a swimming pool. Were we going to limit social opportunities to avoid even further? How could we not if it meant he could finally outgrow these allergies?

Around this time, I started immersing myself in the research. Before I was going to go whole-hog with this thing, I wanted to know what the scientific basis for all this avoiding actually was. Instead, what I found was Outgrowing Milk Allergy May Take Some Babies Longer Than Expected.

Hmm...provocative. It could be that the allergens themselves have changed, making these traditionally toddler-only allergies more persistent. It could be that the process of becoming allergic was different, resulting in a more persistent allergy. It could be that the length of milk/egg allergy had never been well measured, so the perception that they were outgrown in toddler-hood was simply wrong.

Or...it could be that parents were doing something different, changing the environmental factors, keeping their children away from those small exposures that led to outgrowing allergies.

This last one haunted me. I had worked hard at avoidance and felt smug in my judgement of those "lax" parents who just took the cheese off the pizza, or cut the breading off the chicken fingers, or gave their kids the foods they could tolerate and dealt with reactions if they happened.

A few years later, tolerance studies began. People who, for years, had bad-mouthed the SLIT studies were suddenly questioning their assumptions. As a result of the tolerance studies, researchers broadened their attention to milk and egg allergies. Lo and behold, 80% of kids with persistent milk allergies (ages 2-17) could tolerate baked milk.

80%. There were no predictive criteria for who would fail. It didn't matter how old the kid was. It didn't matter how big their wheal was to raw milk (my son's entire arm swelled - he still passed). It didn't matter how severe past reactions were, or what type of symptoms were experienced, or how high RAST scores were. Wow.

As I've commented before, my immersion in the group-think badly prepared me for the fun of introducing baked milk. There ARE symptoms. Just as there were when my child was a toddler and we used to cut the breading off his chicken nuggets. Only now, we're far more anxious about those symptoms because of our Total Avoidance conditioning. And, I know there's a whole generation of food-allergy-dogma-immersed parents and children behind me who are going to find working through these allergies with baked foods very painful.

Would I do it differently, knowing what I know now? It's tough to even consider that. But yes - I was a lot more carefree in my child's early years and it makes me angry that my investment in Total Avoidance was probably a waste, and possibly even detrimental.

Don't misunderstand me. I would still not give my child food with a "may contain peanut" label since we know a good percentage of those foods DO contain peanut. But...I wonder if I had to go as far as I did down that slippery slope. And I wonder a great deal if his milk allergy needed to be handled with the same extreme degree of avoidance as his peanut allergy.

After the debacle of food-allergy advice from doctors (avoid nuts during pregnancy, avoid introducing potential allergens to siblings, etc.), I know doctors are hesitant to take a position on this since they cannot be certain. Plus, they don't want the liability should a child have a serious reaction as a result of the "laxness" of parents. BUT...I do not think doctors should exempt themselves from the MENTAL health of the families they counsel. Not taking a stand IS taking a stand.

I hesitated to write this column because I do not want a parent new to food allergies thinking this is medical advice. IT'S NOT. You need to ask your doctor where he/she stands on this issue and decide for yourself.

I'm just here to bitch about it.