Sunday, July 24, 2011

Navigating murky waters

I have been hesitant to write lately because a lot of things have happened that I haven't really know what to think and/or say about them. We've received new information about Ellie's health, we've had family in town, we traveled out of town, Ellie and I both came down with a stomach virus, we marked 6 months on SCD/GAPS, we've had several food trials fail, Ellie has been riding a constipation/diarrhea roller coaster that's made everyone miserable, we started a new supplement, we've seen a new doctor and been referred to yet another doctor. Bleh. It's been an exhausting month.

It feels like the energy shifted about a month ago when we got back the results for Ellie's IGG allergy test. It came back showing us nothing. Nothing we didn't know already, anyway. The ONLY food she had a reaction to was chicken eggs, which we had already confirmed as an allergy through a skin prick test at her mainstream allergist's office and subsequent elimination and challenge. The test showed nothing else, and we were shocked. Nothing for dairy, nothing for gluten, nothing for coconut, nothing for citrus - shocked.

This can mean several things. It could mean that Ellie was sensitive to these foods and she no longer is (oh how I wish we had done this test six months or a year ago so we could compare results). It could mean that she is sensitive to these foods, and her immune system is still underdeveloped so the test wasn't able to pick up a response. Or, it could mean that she is not reacting to foods by the pathway of allergies and an immune response, but by some other pathway, like digestion.

We have been exploring this third theory a lot with our nutritionist. One thing we've noticed is that many of the foods Ellie reacts to are fats. Coconut, for example. Ghee. Or beef. Since this is the case, it is possible that Ellie is not properly digesting fats and that there is something wrong with her liver and/or gallbladder. Interestingly, lately when she's told us her tummy hurts, the area she's pointing to has changed. She used to point to her lower tummy (intestines) or her chest (reflux) but lately has been pointing right below her ribs, where her liver and gallbladder sit.

On July 1 we switched health insurance plans and our new plan has an allowance for "alternative" medicine. I leaped on that opportunity and took Ellie to see a naturopath, who works closely with our nutritionist. The meeting was extremely beneficial. It was remarkable to meet with a doctor who listened to our story, believed the things I was saying and was incredibly well-versed in Ellie's issues. She also raised concerns about Ellie's liver not functioning properly and suggested having an ultrasound done so we could take a look at that organ. I described my frustration to the naturopath that we are six months into this diet and Ellie is still symptomatic, the most perplexing of which are her waking at night with stomach cramping and this constipation/diarrhea roller coaster. She suggested doing a colonoscopy to rule out Crohn's disease or Ulcerative Colitis.

Ian and I are very reluctant to have Ellie put under again. We agreed to it last summer when her former GI suggested an endoscopy to rule out Eosinophilic Esophagitis, which ended up telling us nothing (except that she didn't have EE). The whole experience was extremely stressful and we don't want to do it again unless absolutely necessary. I keep struggling to wrap my brain around why - at nearly seven months into a diet that is supposed to heal IBS, Chrohn's and UC - we might need to have a test done to see if Ellie has one of these conditions. Shouldn't she be well on her way to healed by now? If anything, I feel like there are some ways in which she is worse.

Both the nutritionist and the naturopath have very gently suggested I consider weaning Ellie in order to remove one piece of this confounding equation. I know that I personally feel like I'm about to snap with how restricted our diet is. But the thought of weaning a sick child feels extremely counterintiutive. Yes, it is possible that Ellie is struggling with some element of my milk. But it's also possible (and I would guess much more likely) that the benefits of my milk to her immune system and her digestive tract far outweigh any risks. I would probably consider weaning if it were like any other food that you could remove for a week or two and then try reintroducing. But breastfeeding doesn't work like that. It's not something I could get back (not easily anyway, I know relactating is possible, but it takes a while for things to get up and running again).

We did a stool test last November that showed us Ellie's gut flora was a mess. She had massive overgrowth of some pathogenic bacteria and zero growth of the good stuff. We are now redoing the same test to see if this diet has resulted in any progress. I am really looking forward to this information. It seems like everything with Ellie's health is so nebulous and full of guesswork; I look forward to looking at some concrete numbers.

As for our day-to-day life, we are still on GAPS with the one exception of using Stevia to get Ellie to drink apple cider vinegar and magnesium. We are eating meat, vegetables and two fruits: green apples and blueberries. We do eat the occasional duck egg but I find Ellie does best when that's limited. I am pretty flexible as far as what nuts I can eat, but Ellie is only having cashew butter right now. We are experimenting with keeping almond flour/butter out of her diet to see if it was contributing to constipation. I am hopeful that Ellie will start doing better soon so I can trial lentils in my diet to add some much-needed variety. It's so hard to be in a holding pattern on food as we wait for her to find some sort of baseline. We are both on our full doses of probiotics and Ellie remains very sensitive to actual fermented foods.

And so we carry on...


  1. Hi Annie,

    oh my heart goes out to you. especially r.e. the weaning question. I have been looking at that recently too. I bought some gorgeous cheese at a farmers market for someone else and couldn't resist trying a tiny bit. (Casein was/is one of my own biggest problematic foods) I tried it on three occasions a few days apart and it was each of those days that Louie has a really, really restless night waking tons - the connection couldn't be doubted the 3rd time. So no cheese for me for another while, of course, but it also made me think about my milk - is it more benefical to him overall or are allergens/toxins in my milk too detrimental? Its a question about breastmilk that I haven't been able to find much info on either: when do the benefits get outweighed? I'm with you that it feels totally counter-intuitive to wean a sick child. what i did as an experiment was to cut out the milk before bed (I told him that day i was going to and he was suprisingly fine and so I've carried on with that) sleep is still broken but nowhere near as bad as the cheese days! so its prob not the sleep answer after all. He is still feeding about once or twice a day now but earlier in the day. not sure to wean from that or, as I always wanted to, let him decide when to let that go.

    Sounds like the liver is a key for Ellie...

    I know you're overwhelmed with info right now but if you ever want to check out 'Eating Alive II' by Dr Jon Matsen - (he helped me a lot when i was in Canada and connected a good few pieces of the puzzle together)- its really really good on explaining both the liver and gut in health and digestion, his DVD is a great lecture too.


  2. Hello,
    even though we are not really following the GAPS diet I love to know how you two are doing, thank-you for giving these updates and for being so honest. I feel ya with the weaning ting, I don't know if I could do it, but if Josiah had severe gut problems I would probably consider it. Remember in the book Natasha talks about lactose not being digested fully by a damaged gut? Well breastmilk is high in lactose! I wonder if she is not fully breaking it down? I have been using Enzymedica plant enzymes with every meal and have been noticing a lot of improvement in my own digestion. It is very important to be able to break down our food and the digestive enzymes can help speed up the recovery because then the whole system isn't overburdened. Plus then there is less that is feeding the pathogens. Is she doing broth at every meal still? Like I said before the gelatin and/or l-glutmaine is essential to healing the intestines. You could also buy a high quality gelatin like Great Lakes and add it food. Does she eat a lot of fiber? What she might be experiencing is IBS and fiber even from healthy vegetables can be very problematic for someone experiencing fluctuating constipation and diarrhea, I disagree that all that plant matter helps our body heal, especially for someone with a sensitive digestive system. I'm so sorry it seems like things are not working, it seems like you've made progress but wish she still wasn't experiencing symptoms at this point. I hope you find some answers with the tests and that you can figure out if the milk sugar is helping or hindering.

  3. Julia and Janelle - Thanks so much for your kind words. Sounds like we're all in the same boat, thinking about weaning kiddos who aren't well yet. It's a tough call. I've decided to pursue several other theories first before trying to tackle weaning. Ellie is a committed nurser and I know she would not go down without a fight, which is the last stressor our household needs right now!

    My feeling is that if Ellie can have well periods while nursing then there is some other culprit we haven't figured out yet.

    We did start Ellie on enzymes (I write a paragraph about that but I think I somehow deleted it!). Anyway it is making a huge difference, as are some other changes I'll write about soon.