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Friday, November 13, 2009

Going Radical!

I've turned into a bit of a radical after a trip with my 10-year old son to National Jewish Hospital in Denver, CO. We were there for a 10-day outpatient program designed for children with allergies, eczema and asthma.

Before I went, I lived in fear of food. Now I refuse to live that way.

And this standing up to the fear has changed the way I interact with other food allergic families. Now when I meet newly diagnosed families that present a laundry list of food allergens that their child has, the first thing I ask is, "how do you know s/he is allergic to those foods?"

The old me would have just listened.

And I suspect asking "how do you know..." comes off as harsh, but as a parent with their own laundry list of allergens, I think it's a question that needs to be asked.

I wish it was a question that doctors spent more time asking, because the science behind food allergies is changing.

When Benw as diagnosed 9- years ago, the overwhelming medical philosophy was "avoid, avoid, avoid." Not only were we taught to strictly avoid his allergens, but we were also cautioned to avoid foods that were highly allergenic and could create more allergies.

I know this philosophy still exists. I talk with plenty of parents who say, "We're allergic to peanuts, so we're also staying away from tree nuts."

The new radical in me says, "Whoa! Let's think twice about this."

I understand this thinking completely. If you've ever seen your child react to a peanut, there's the inherent fear of all nuts. Fear is something which can be paralyzing.

Secondly, figuring out if your child can actually eat tree nuts requires a lot of work as that group contains walnuts, almonds, cashews, hazelnuts, brazil nuts, just to name a few. It's so much easier just to avoid the whole group.

Lastly, it is difficult to buy tree nuts that do not contain a peanut cross-contamination label -- however it is possible. Blue Diamon makes a "peanut-free" almond. You can also purchase the nuts whole and shell them yourself. Personally, I've picked up shelled cashews for Ben at Whole Foods and he has safely enjoyed them as an after school treat.

So the new radical in me says that children should be eating all that they CAN be eating. Not only from a nutritional standpoint, but also in order to actually avoid developign new allergies from such limited exposure.

I use our experience with wheat to illustrate this point.

Up until 18 months old, Ben ate wheat. He had pretzels and pasta, Cheerios and other wheat-based but dairy-free cereal. We thought he was only allergic to dairy and peanut. And actually, he ate wheat without any noticeable major response from his immune system.

Now my caveat is, at 18 months, Ben was a drippy kid 9still is) and his eczema was still fairly active (no longer true).

However, when he ate wheat, he had no hives, didn't complain about an itchy mouth, didn't vomit and there was no noticeable worsening of his eczema. There was no immediate immunological response to Ben eating wheat. We had, in the past, witnessed immediate immunological responses from Ben eating dairy.

However, at 18 months or so, we had a blood test that indicated that he was highly allergic to wheat and the dotor counseled us to take it out of his diet immediately.

We did. Subsequent tests indicated that he was also allergic to barley and rye and those went from his diet as well.

By age two, Ben was completely "gluten-free," although his doctor was careful to explain that he was actually fine with the gluten and really just allergic to the protein in each of these grains. At age four, we accidentally washed Ben's hair with a shampoo that contained wheat germ, and this time we did see an immediate response. He was crazy sneezing! This reaction confirmed to us his wheat allergy and we increased our vigilance, keeping him away from airborne wheat as well as ingested wheat.

But in the back of our mind was always the nagging thought that this kid had been successfully eating wheat before we took it out of his diet.

So at National Jewish, we had the opportunity to challenge Ben to wheat in a safe and controlled environment.

we had seen the blood test numbers -- they were extreme. We had the skin test result -- it was enormous. But in this safe environment, we wanted the answer to the lingering question, "What happened to that kid who used to eat wheat?"

So we tried a gram of pasta. I chose pasta because with many allergens cooking actually changes the protein, so I thought perhaps the cooked form of wheat would be more tolerable to Ben. I also chose pasta because if we could get regular pasta back into our lfie it would definitely open up more doors for us.

A gram of pasta is incredibly small. It's like two threads of pasta that are a centimeter each. It's really really small.

But Ben's reaction to it was really really big. That tiny bit of pasta caused him to immediately start biting his lips ferociously in an effort to get them to stop itching. A dose of Benadryl stopped the reactin, but confirmed that at this time in his life, Ben is truly allergic to wheat.

The allergist reclassified his reaction to wheat s one that has a high potential to be anaphylactic in the future.

So what happened to Ben? My husband and I believe that we had some hand in creating this allergy because we took wheat out of his diet without asking the right questions. We believe that while he may have had identifiable IGE in his blood at age one-and-a-half, he probably was creating his own tolerance to the food through small exposures.

Amazingly, I carry no quilt about this as I can honestly accept that science has changed over the course of ten years, and that we were doing the best with what we had.

However, now I caution families that beofre they decide not to eat something, they need to ask the right questions.

Science is constantly changing, and continues to be open to personal interpreation by medical personnel.

For me, based on my experience in Denver, plus the 10-years we have been living this crazy life, I believe that you need to see a blood test AND a skin test AND then talk with your professional about doing an actual food challenge.

Particularly if a doctor is telling you to remove a food from your child's diet and you have never seen an identifiable immunological response to this food, a challenge can be done safely. Remember, Ben was fine after his does of Benadryl. The reaction did not progress further.

In addition to insiting on using these three tools of diagnoses, I really encourage families to get a second opinion. If a doctor is recommending you pull three or four major foods from your child's diet, ask another professional if s/he agrees.

It's a big decision that may have ramifications down the road. Tread carefully my friends, tread carefully.

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