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Thursday, April 11, 2013

Update: GAPS, Unorthodox Tweaks, and New Theories on Salicylate Sensitivity

My 3 year old daughter had a good month. OK, a really good month. The thing about having a special needs kid, is that needed core resources can often be inaccessible due to insurance, geography, or other heartbreaking complications. Or, the pendulum can find itself on the other end of the spectrum, where everybody is selling something to help, and the bewildered parent tries to figure out what is or isn't covered by insurance, and what offerings seem most promising.

In our house we have parades for celebration-worthy poops.
(Via Flickr Creative Commons.)
In the second case, it's not uncommon for a kid to make developmental or other leaps, and the parents find themselves not able to precisely determine the causes for success...because this isn't a double blind single variable/control random trial with lab rats; this is your one and only precious child, for whom you will spare little effort or expense in the hopes of progress. That is, you can have several contributing factors at once, and it can be hard to pin successes on any one factor.

In our case, we have connected in recent months with a board certified pediatrician who is known in our area for specializing with special needs kids and gut health. There are many things she is trying with our daughter, including some targeted supplementation after an initial lab determining nutrient status. Most notably, though, she characterized the GAPS diet as a, "good starting point". She noted that my daughter's ongoing issues with soft, mushy poop signaled that yeast could still be a problem, and asked us to cut way back on fruit. Although fruit is GAPS-legal, I think it is easy to overdo, at least in our case, because it is so portable and fast. Our daughter was eating 3 or 4 pieces in a day at the time. The doctor also recommended introducing a small handful of ancient gluten free grains, to see how they were tolerated.

GRAINS?! The part of me that was so committed and knowledgeable about how GAPS is supposed to proceed was fairly panicky at the thought. GAPS is supposed to heal the gut, and then much longer down the road, include nongluten grains once the gut was stabilized.

But, I had been feeling desperate to try something different. Mushy poop is not exactly an asset for a kid you'd hope to daytime potty train before her preschool potty training deadline arrives this fall. We started to follow the doctor's prescribed guidelines. While quinoa did not seem to settle so well, buckwheat seemed to agree with her very well, so she was getting very small servings of it as a carb source. Occasionally small amounts of rice (known by many in the paleo community as a safe starch) also came into play.

And guess what? She did not regress.

In fact, for about three glorious weeks, my 3 year old made some wonderful progress. It is, of course, possible for a parent to be biased or overly subjective when evaluating behavioral changes as correlated to diet changes. But, do you know what is not so subjective? Suddenly solid, normal-looking poop. Also: Sleeping all the way through the night like a rock star. Also: Her speech therapists, occupational therapist, AND her preschool teachers gave us extra-encouraging reports.

So, not only was our daughter's behavior and concentration improving, but her previously mushy, foul-smelling poop suddenly resolved into Bristol Stool Scale 4 poops. This is what many in the special needs community would call a "holy grail poop" - it is a pretty universal sign that digestively, something has resolved or is resolving in the right direction.

So, I got cocky. I thought, "This is great, we have figured things out, we are helping her!"

And suddenly, like that, 3 weeks of awesomeness went to (har har) crap. Awful poops, increasingly disrupted sleep, lack of concentration, and ultra-lethargic, distracted behavior.

I was beside myself. I was beside myself trying to figure out what the heck happened. What had changed? Then I realized: I had been doing a 21 Day Sugar Detox through March, and about a week before Easter it ended. Suddenly, I was back to making stuff that I hadn't made for about three weeks - treat-y things involving coconut flour, almond flour, honey, etc. We also had some meals involving marinara (= tomatoes), and I had bought some frozen diced pineapple and mango - all three of which I had not bought or cooked in that three weeks.

The common denominator among these foods seems to be salicylates - and these inadvertently reintroduced foods happen to be moderately to very high in them. Sarah Ballantyne of The Paleo Mom wrote a post on salicylate sensitivity a while back. The possibility of salicylate sensitivity had also been brought up by our certified nutritional therapy practitioner.

Many who work in the field of special needs kids' gut health know that there is not always a simple answer, and that often sensitivities and allergies must be determined slowly, sometimes taking months or years to suss out. Frequently, as seems to be happening for us, major issues like gluten and dairy will be identified, only for smaller, lesser-known factors including (but not limited to) salicylates, phenols, amines, food dyes, artificial colors, and artificial flavors to be determined as fellow culprits. More complicated still, they are often naturally occuring chemical components of otherwise healthy, harmless foods that most folks can eat with impunity, so the lesser-known factors are rarely obvious unless strict dietary elimination trials are performed.

In our case, while nothing is yet 100% certain, there was certainly a dramatic enough correlation to merit serious consideration of dietary salicylates as a real problem for our daughter - because when I stopped feeding her honey, almonds, coconut, tomatoes, pineapple, and other higher salicylate foods in favor of lower-salicylate alternatives, her poop went from ultra messy and gross back to celebration-worthy, her sleep improved, and she began talking up a storm again, using sentences with even 9 or 10 words, and increasingly discussing her surroundings.

For me, continuously tweaking her diet has become much less about following a protocol's rules (whether GAPS, paleo, etc.) than turning it into a real n=1. For example, buckwheat may not be optimally nutritious in terms of its nutrient content, but as a carefully considered carb source for my daughter it beats many fruits and other high-salicylate foods because it does not draw her into messy-poo-Crazytown. In the meantime, though, several solid GAPS principles remain in place: such as probiotics, live fermented foods, and bone broth!

I have a feeling this is just one example of many tinkering exercises we will be doing with her diet in the years to come, but until then, I celebrate that we can possibly slide one more giant piece of the puzzle into place.



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Have you broken rank with a protocol or dietary recommendation in a bid to better personalize dietary needs?

9 comments:

  1. This is awesome detective work! Your daughter is very lucky to have you! I completely agree that the diet must be customized to best meet the needs of the child. Low carb dieting is potentially dangerous for a child when fruit and honey is eliminated on GAPS. Buckwheat, however, is not dangerous. :)

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  2. I do not have any experience with GAPS or special dietary needs but stumbled onto your blog while searching for some paleo information. I am truly inspired by the work you are doing to achieve the best nutritional balance for your child. Glad to hear that slowly the pieces of the puzzle seem to be revealing themselves. Hoping that she stays healthy and happy on her new changed diet.

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  3. You are truly amazing. My heart is warm with your dedication in choosing to do the absolute best for her. You do crack me up with your "poop scale" Who knew? Not me. You are a wealth of knowledge and I appreciate you more than you know.

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  4. We are always on the lookout for foods that cause me to have painful gut irritation. My kids on the other hand, besides when they are with grandma and grandpa (who feed them everything horrible under the sun), have no such problems. We recently reintroduced white rice into our diets for added carbs (my husband and I are both athletes) and may now work on some other grains as well, such as buckwheat and wild rice. It's still a slow process, but the kids are happy to have some carbs back! Previously (before going Paleo a year ago) they would never touch rice, now it's a treat they cherish!

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  5. Thank you! When you mentioned almonds being high in salicylates, I realized that salicylates are probably the missing link we've been looking for with my husband's health. He's asthmatic, with a severe aspirin allergy. Almonds and processed meats are two things we'd already identified as causing attacks. It'll take some adjustment, with olive oil and coconut products being staples for us currently, and most of our favorite spices being high salicylate. But it's good to finally have a really plausible explanation!

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    1. Hi, Jess!! If processed meats are a problem, it may be salicylates and/or histamines. I'd also recommend that you check out the recent post by Georgia Ede MD for information on histamine intolerance - high-histamine foods include processed meats

      Good luck sleuthing the source of your husband's asthma-related issues!

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  6. Great article.

    I've been through food intolerance with my son. I took us vegetarian and almost dairy free and he improved dramatically. Surprisingly, buckwheat is a great grain. We also do green smoothies for breakfast now as my son no longer suffers from food intolerance like he used to. I also make my own water kefir grains so that I can get some good ferments into his bowel to assist with healing leaky gut. The awareness of salicylates among the general community is growing and that's a positive thing for parents who have children with special needs. Great you are putting the word out there like I am. :-)

    Stay well, Eileen.

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  7. Excellent share and n=1 summary! I get so excited when things can be narrowed down like that! Congrats!

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  8. It's been awhile since you wrote this article, but regarding salicylate sensitivity, there is an incredibly informative website: fedup.com.au, which focuses on food intolerances - of artificial additives and natural food chemicals (namely salicylates, amines and glutamates). From both the information presented there and the forums, there is clearly a wide range of effects from food intolerance.

    My own 4 year-old son has suffered eczema, asthma, poor sleep and ADHD and ODD type behaviour, and having discovered this website and adjusted his diet accordingly, all of these problems have lessened considerably. We are about to embark on a full RPAH elimination to find out exactly what he reacts to and how much he is able to tolerate.

    I have been slightly loathe to pursue this avenue as it means cutting out lots of foods and flavours we love (I am also an advocate of wholefoods and lean towards a paleo diet). However, it really seems to make a difference. By the way, they have published various books and , in particular, a really useful DVD. Sorry to go on so, but having made the discovery I tend to evangelise a bit..

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