Friday, April 13, 2012

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.

12 comments:

  1. Wow! I'm sorry Ellie and you are having to go through this, I really hope that she heals. I came cross a discussion about the GAPS diet on Dr. Paul Jaminet's blog, I thought you might find it helpful, here is part of what he said: 'It is not starches per se that are protective of the gut, but glucose; this is needed for mucus production, for preservation of the intestinal barrier, and for immune function. It is possible in very low-carb diets, especially if protein intake is limited, to significantly reduce mucus production and impair the integrity of the gut mucosa and barrier.' http://perfecthealthdiet.com/?p=5198

    It sounds like she is still able to eat enough protein? but what about starch? I hate to see her get worse because of a very limited diet, with limited macro's as well. He also has a lot of info regarding infections that you might find helpful in your journey, I know it must feel good to know what exactly she is reacting to but I guess now your task is to understand why her little body is reacting to so much! Oh and Dr. Paul is really good about answering people's questions so you could give it a shot and see what he has to say.

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  2. Hello, me again, I just joined a vitamin K group for people with autism and other disorders and came across a post about salicylates. Here is part of it:
    "
    My son has problems with salicylates and from my research, I have found that

    painful/frequent urination is one of the side effects of sal. sensitivity.. I

    have also read that Vit K corrects sal. sensitivity.. And on one salicylate

    forum, several people commented on how sipping water with baking soda helps

    their sal. sensitivity reactions (the baking soda also helps my son

    tremendously) - and of course the baking soda is a cornerstone of this

    protocol." http://health.groups.yahoo.com/group/VitaminK/messages/12883?threaded=1&m=e&var=1&tidx=1

    You should check out the group, people have had good success with supplementing Vitamin K2 (MK-4) for all kinds of problems.

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    1. Hi Janelle,

      I just want to clarify that even though Ellie doesn't eat grains or any type of sweeteners, she gets plenty of carbs. Currently she is eating yams, sweet potatoes, peas, etc.

      Also - just in case there are people out there who read this and are concerned about the safety of my daughter's diet, I can reassure you that Ellie's diet is closely monitored by a nutritionist.

      Thanks for the tip about Vitamin K!

      ~Annie

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  3. I'm sorry that your daughter is going through this. I'm allergic to aspirin and never thought that I could be intolerant to salicylates(I know right?). So I thought I'm feeding myself a healthy diet by eating foods that high on the list,I had no idea of course. This is a bit daunting because I also don't eat grains and my diet is so limited. I can't have dairy and soy either. I'm paleo, tried GAPS too but didn't really see much improvement. Right now I'm covered in hives and I'm trying to figure out if this is due to overloading on certain foods that are high on salicylates. I've been living on Zyrtec and Benadryl. Good luck on your journey!

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    1. Hi Browneyedgirl - I can so sympathize with you - being grain-free (and dairy-free, and soy-free!!!) is extremely challenging when you are sensitive to high salicylate foods. I don't know if you have read more recent posts but we have had tremendous success with getting my daughter on Ketotifen, which is a drug you have to get through Canada. It helps her tolerate much more high salicylate foods and has been a life-changer for sure. Good luck on your journey, too! All the best,

      ~Annie

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  4. You have a very good allergist for targeting salicylates. Most doctors (even allergists) don't look at salicylates in the diet. I've been through it with my son and unfortunately had to figure everything out on my own. Did about 3 years worth of research. My son is salicylate AND amine intolerant also. My son was running around out of control when he was eating good/healthy foods and would have calm periods after having pasta. I knew it was a food issue but could not figure it out because I thought that healthy food is healthy food - how can that cause problems? We first started on the Feingold Diet and saw major improvements. It was the first time my son sat down at a meal and had a focused conversation with us. Feingold does not eliminate a lot of high salicylate foods so we still had some problems. I found out that they eliminate the foods that are the most problematic for people and not necessarily the ones that are the highest in salicylates. I finally came upon Sue Dengate's book "Fed Up" and that's when everything clicked for me. Her book led me to find the Allergy Friendly Food book written by Drs Swain, Soutter and Loblay from the Royal Prince Alfred Hospital in Sydney, Australia. It's basically a nice recipe book that has low chemical recipes. The front of the book has food charts that list foods that are low, moderate, high or very high in salicylates, amines and glutamates. The foods that are listed as high or very high in salicylates and/or amines matched all the foods that were problematic from my son's food journal that I kept for 2 years. I religiously use the charts in this book. Sue Dengate has a Food Intolerance Network website http://fedup.com.au/. They call it FAILSAFE eating (free of additives, low in salicylates, amines and flavour enhancers). I belong to the FAILSAFE Yahoo! users group where everyone is very helpful with information on salicylates and amines. I know how difficult it is to struggle with a child's food intolerances. The low salicylate and low amine diet for my son is a life changer for us. Good luck and I hope this helps anyone else struggling with food issues.

    Mick

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    1. Hi Mick,

      Thank you SO much for sharing your story. I think by sharing our stories we can help other frustrated parents who are probably bleary-eyed and looking for answers on the internet at 2 am just like we were one day! I agree that the Fed Up book and the failsafe Web site are fantastic resources if you're looking to root out salicylates and aimines. Thanks for the heads-up about the Yahoo group. I'm so happy you found answers for your son!

      ~Annie

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  5. Hi Annie,

    I know this post is old, but I'm wondering if you ever tried No Fenol for your daughter's salicylate intolerance. I mention this because even though you've had success with Ketotifin, I'm not sure that that drug does anything except suppress the reactions to foods. Salicylates screw up the Krebs Cycle (the energy cycle!), and can cause metabolic acidosis as a result…and No Fenol helps to digest the phenols/salicylates. It may not correct the Krebs Cycle issue, but many are able to eat more foods by using it.

    Also, when it comes to grains, it may come down to an issue with mycotoxins or molds. There are yeasts like Saccharomyces cerevisiae that can help block or digest/reduce these mycotoxins.

    Best of luck

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  6. Hi Danny,

    Thanks for your comment! You're right that what Ketotifen does is suppress the allergic reaction in the gut. It has it's place, but we still need to avoid high salicylate foods.

    ~Annie

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  7. wow, I think I'm finally figuring out my problem! I started an elimination diet in January of 2014 to finally get to the bottom of my food allergies. I did not eat wheat, dairy, eggs, soy, corn, red meat, caffeine, alcohol, sugar... etc. My body went into a major detox, as I lost 10 lbs in 6 days... and it was not fat :-) it was all inflammation, toxins and water. I believe now that I compromised my liver/kidneys/lymphatic systems - and awoke this monster "salicylate sensitivity" which was always in me, but sleeping. For weeks I could not string 3 good days together on this elimination diet, I could not understand it, I have NEVER eaten so healthy before. I went paleo, thinking that all grains were bothering me. Still no relief. Then I finally stumbled upon "sals" as my issue, it all started to make sense. I have never craved fruit in my life, I would eat it because I told myself it was good for me. So here I am, I'm trying to support my detox pathways with a detox kit from heel. I find taking EPSOM salt baths very helpful, as they supply sulphate in the form the body needs to support the PST detox pathways which is what is needed for sals. I'm having a very hard time accepting the limitation of the diet to feel better, I'm working very hard to find supplements that will help me. There is a blog that I found with a gal who has had success with supplements: http://salicylate.me/ I'm going to give her protocol a try. My symptoms are hives and itchy skin, I've had eczema all my life. seems to be typical.

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    1. I'm glad this was helpful! I would love to hear back from you if you try the protocol recommended on salicylate.me. I haven't heard of most of those supplements. Ellie does take a B Vitamin complex.

      Epsom baths are so helpful! That is something we continue to do as it seems to really support Ellie.

      Ellie's salicylate symptoms are not skin related, but mostly tummy aches, headaches and urinary urgency.

      I hope you are able to feel better soon!

      ~Annie

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  8. hi, I wonder if Ellie grow out of it? its 4 years by now. I have 6,5 yr old daughter (one of the twins) and she had anger issues, we eliminated gluten and diary and it did help, but the more healthy we were eating the more issues we had. Since its summer we were eating lots of berries and she was getting worse so i did research and discover that salicylate can be a problem we removed it and it seems to work but I'm probably make mistakes of giving her food from with medium salicylic acid (which she was eating week ago with no problem) and now they made her crazy (kicking, screaming, salivating, crying). I know that finally i will get it right - till now we can eat rice, buckwheat, carrot, pears, banana and bone broth which i use for cooking above grains. all meats (cos of amines ?) are not good.
    cheers for this article cos I feel less crazy. before LS diet i did immune Paelo, low carbs (We still GFCF) and i though I'm loosing this battle now i see the hope.
    all the best
    Ania

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