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...