When a grain-free diet isn’t working, look to salicylates

Over the course of the past month or so we’ve done some skin prick testing that has revealed some surprising food allergies for Ellie. She’s tested positive for allergies to: parsley, spinach, celery, carrots, lemon, grapefruit, walnuts, cinnamon, cod, bananas and oysters. Ellie’s allergist made a comment that perhaps Ellie was sensitive to salicylates, since many of the foods she tested positive for are high in salicylates. Some of the other foods are high in amines, another food chemical. It seems that often times if a person is sensitive to salicylates, or amines, they are also sensitive to the other.

I had never heard of salicylates and didn’t think much of the comment for days, feeling overwhelmed at the task of removing all these foods from Ellie’s already very limited diet. (Some foods had been removed long ago, but others were still a huge part of her diet.)

But time went on and Ellie continued having the same reaction to a variety of food. On two days I fed her raspberries, which she hadn’t had since last summer, and she became crazy hyperactive, had bright red flushed cheeks and was suddenly fussy and clingy. Another day I gave her some cherry tomatoes and the same reaction happened. I gave her some freeze-dried blueberries another day and – again – same reaction. I tried giving Ellie a homeopathic nasal spray of quercetin, which is a natural chemical found in foods and is believed to help support the immune system and suppress allergy symptoms. Well I found out the hard way that this type of quercetin is often sourced from parsley and citrus, which are very high in salicylates, and Ellie had the same. damn. reaction.

Fresh food allergy testing, going off allergy meds

Last week I took Ellie in to her allergist's office to do fresh food allergy testing. The way this works is a lot like traditional skin prick allergy testing. First the nurse used the food extracts, taking plastic pins that had been submerged in food extracts and then poking them into Ellie's back. With the extracts, Ellie had positive results for parsley and spinach. Because the results were so clear, we did not follow up with the fresh foods for parsley and spinach.

Next, came the fresh food testing. I had brought in a bunch of foods that I suspected for causing problems for Ellie. I focused on foods that cross-react with birch tree pollen since we've been suspecting Oral Allergy Syndrome, but I also threw in random foods my mama instincts told me were suspicious. It was actually very cute because Ellie was not keen on doing a second round of "pokes" but the nurse encouraged Ellie to poke the pins into the fruits and vegetables which really helped settle her down. With the fresh food testing Ellie tested positive for celery, carrots, lemon, grapefruit.

Making the decision to use allergy medicine

Man we have been through the wringer lately. Ellie has been very ill - up every night for hours on end with tummy aches that we can't seem to fix. We have been keeping her on a very conservative diet and yet she keeps reacting to things that used to be fine. Over the weekend I did more research online about Oral Allergy Syndrome - which her allergist suggested as a possibility on Friday - and I've become convinced that this is an issue for Ellie.

So we were faced with the decision of trying to eliminate all foods from Ellie's diet which can cross-react with environmental allergens like birch tree pollen. This would have included foods like carrots, apples, cucumbers, zucchinis and almonds, which are all critical in her extremely restricted diet. The other option was to try Singulair. Every bone in my body resisted the idea of taking one more food out of Ellie's diet so, yesterday, after a hellish night, I decided to take a leap of faith and try the Singulair. She had a better night last night (up four times, but much much better than hours of screaming). I am feeling very cautiously optimistic.

Uncovering more allergies and Oral Allergy Syndrome

The past few weeks have brought a series of revelations that I'm hopeful will someday soon bring us to a place of healing for Ellie.

How do I sum it all up? The first realization came last month when I realized Ellie was reacting to cinnamon. This opened up a new level of awareness for me that Ellie may have allergies that still have not been identified. I became more observant of symptoms like skin reactions and started to notice some interesting trends.

• For example, Ellie recently was eating some green beans that had been sauteed in garlic and her hands got red and she started asking us to wipe them off over and over again. I put a split garlic clove on her inner arm and she developed a rash. No more garlic ....?
• I had taken Ellie off fermented cod liver oil because I had been giving her cinnamon flavored FCLO. The new order of unflavored oil arrived and she started having tummy aches and was complaining the oil made her lips hurt. No more FCLO .... ?
• A few weekends ago we traveled up to Seattle and in one day Ellie had crab and scallops. That night she was up vomiting for three hours until her poor tummy was completely empty. No more shellfish .... ?

This morning we went back in to Ellie's allergist to see if any of these  problems could be verified by skin prick testing. I came up with a list based on our recent experiences, including the day she got a severe stomach ache from eating a banana, and a random last-minute feeling I had that I should check walnuts.

What's for dinner?

I've been living in limbo this week as we await test results both for myself and Ellie which will help us determine what our next steps will be. After going back and forth about whether to test Ellie for fructose intolerance or small intestine bacteria overgrowth, we decided last week to test for SIBO since it can cause problems with fructose, along with other things Ellie is struggling with (tolerating any fermented foods, for example). And this week I will get news on a stool test and a food intolerance test. I'm not great at waiting, so I've been going a little crazy.

So over the weekend I turned my attention to taking some practical steps to make living with this diet a little easier. I find that I can work myself up every single day trying to figure out what to make for dinner. You would think when the main ingredient options were just meat and vegetables, it would be easy to keep things simple. But somehow that actually causes me to make things more complicated. I think because the ingredients are so simple, I feel compelled to keep our meals very varied so keep boredom at bay. But trying a new recipe every night is not practical, and I realized I needed to create some structure around dinnertime.

Cinnamon Allergy - AHA!

Ellie is allergic to cinnamon. I just figured this out. Here's how it happened.

During our coconut trial this winter Ellie was having a snack - pumpkin "cheesecake" - that she loved. Everytime she ate it, though, she got a red rash around her mouth. And if some cheesecake got on her cheek, a red rash would appear there too. This struck me as odd, and I started to wonder if it was a sign that coconut was not going well. When we pulled the coconut back out of her diet, and therefor pulled the cheesecake - I stopped noticing the rash.

That was until one morning when I gave her a breakfast "porridge" I make her sometimes. It's a mix of ground pumpkin seeds, walnuts, chia seeds, flax seeds, stevia and cinnamon that you pour hot water over and it turns into a yummy, goopy porridge. Well she was eating it and suddenly I noticed that same red rash on her face. How odd. So I compared the two recipes and looked for what they had in common. I decided stevia was the prime suspect, since I had recently read that people with fructose intolerance often can't have stevia and decided to pull that out of her diet.

Reflux explained

In the 2.5 years Ellie has struggled with reflux (among many other digestive symptoms) I've been uniquely perplexed by this symptom. Many nights I wonder - why reflux tonight, and not another night? What was different about today's food?

Western medicine has a very mixed-up understanding of reflux, believing it is caused by too much acidity in the stomach. This explains why we had Ellie on acid-reducing medication for months when she was younger. But it never did any good. And I've talked with lots of other parents with similar stories. I remember a good friend telling me about his little boy who had horrible reflux and was put on medication. "How's the medicine working?" the doctor asked a few weeks later. "Well," my friend cheerfully replied, "at least the vomit smells like bubble gum now!"