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.

I also noticed that as I pared back on high salicylate foods Ellie begged for the few high salicylate foods that remained in her diet. Several mornings she threw tearful fits for blueberries, which is very out of character for her. I’ve always found that food she begs for are very likely causing problems.

Interestingly, I noticed at the same time that Ellie was starting to be extremely self-limiting about other foods. She started refusing greens, cauliflower, zucchini, asparagus and butternut squash and frequently told me those foods made her lips hurt. In fact lip symptoms have been a big problem for months, with Ellie frequently pulling at her lips to the point of removing skin. One day she was eating a homemade sundried tomato flax cracker and her upper lip became swollen in a massive blister.

Finally after several days of blueberry fits I Googled “salicylate sensitivity” and found a lot of great resources. There's a great list of foods here. (What did moms do before Google???) The more I read the more something clicked and I realized this all made sense.

The fact is, the GAPS diet never worked for Ellie. Neither did the Specific Carbohydrate Diet. And neither has this self-invented Paleo-ish diet we were working with. I found a book on Amazon called “Salicylate Intolerance and The Healthier I Ate the Sicker I Got.” This resonates with me very much. I couldn’t understand why this tremendously healthy diet I was feeding Ellie was still making her sick. While I don’t believe Salicylate intolerance is the only mechanism operating here, I do believe it was a major missing piece of the puzzle. For example, pears are “safe” on the salicylate-amine elimination diet, but they made Ellie very sick to her stomach, which is yet another confirmation of my suspicion that she has fructose malabsorption.

I see now why spinach would make my child have horrible stomachaches (salicylates). I see now why bananas made her sick to her stomach (amines). There was a part of me that thought I was crazy, that these connections could not be real. I can’t tell you how many times I mentioned to someone that spinach (or another healthy food) made Ellie sick and they’d look at me cross-eyed, not able to disguise their confusion and disbelief.

This understanding also helps explain incidents way back to our nursing days, like why Ellie would become so hyperactive at night to the point that she’d slam her head into her crib or our headboard when I would consume lots of honey (honey is very high in salicylates). For those who are familiar with salicylates it seems it’s common to have the misunderstanding that they’re only associated with hyperactive, ADHD-type behavior. No one has ever been able to explain why - for example - eating oranges makes Ellie pee her pants, when this is not normally a problem for her. But I’m reading (and finding in our own experience) that salicylates contribute to problems as varied as insomnia, anxiety (in a 2-year-old that comes across as fear of monsters), and a host of stomach problems that get tossed in that catchall term: IBS.

So about two weeks ago I put Ellie on an elimination diet to cut out salicylates and amines. (While traveling, of course. Nothing spells fun like traveling with a toddler going through intense detox.) This has been a daunting task, because the diet as prescribed assumes you are eating grains, dairy and eggs, which we are not, so our food list got quite short. Unfortunately some of the “safe” vegetables for the elimination diet don’t agree with her for other reasons – potatoes give her frightening arthritis-type symptoms and cabbage causes serious tummy aches. Essentially Ellie’s diet got pared back to meat, stock, rutabagas, Brussels sprouts, green beans, onions and cashews. This was not a list I felt very comfortable with, and I only kept to it for about a week since it was so restricted.

Ellie went through a massive detox. She was quite fussy and needed a lot of help at night, to the point where we just started co-sleeping. She had digestive upset that I won’t go into since she’ll be a teenager and read this online someday. “I feel crummy all over,” was her description.

After about a week I slowly started adding foods back in. Mostly I’ve stuck to foods that fall in the low- or medium- salicylate category. The few times I’ve fed her something from the “high” list I’ve regretted it. Since going on this elimination diet I’ve tried pushing Ellie’s diet in other directions – adding duck eggs and rice – and none of it’s worked. So we’re back to sticking with the basics and hoping it’s enough. I remind myself that many a primitive toddler survived on meat and limited produce just fine.

So we’re in a place of not knowing. I don’t know if this salicylate-amine elimination will need to be a long-term approach for Ellie or if we’ll be able to gradually bring those fruits and vegetables back in. If I had a penny for every time I’ve been asked “will she grow out of it?” I’d be a rich woman. And in many ways we don’t yet understand what “it” is. Does Ellie really have true allergies to such innocuous foods as carrots and lemons? Well, yes, but it’s also her body’s way of giving us a signal that there is a bigger underlying problem. Hopefully the better I can understand the underlying issues; the better I can help her. And maybe someday we’ll get through an entire day without a tummy ache.