Sunday, July 12, 2015

Update on Greyden and Me

So, ahem, sorry about the hiatus.  I had some crazy work deadlines that pushed me to working almost full time, and then we've been traveling a ton over the last month.  And have I mentioned that we have insane diet restrictions that require me to spend an inordinate number of hours in the kitchen? Or that I have a husband, two young kids, two dogs, and normal life stuff to keep up with? Or that my husband plays ultimate frisbee for two separate teams and is gone at practices and traveling a lot? (And the kids and I try to go to the games as often as we can.)  Life swept me away and I sort of almost forgot I had a blog.  Once in a while I'd see my signature in my emails with my blog link, and I'd be like Oh yeah, I have a blog!!  I should write a post!!  And then the next thing would happen and thoughts of my blog would flitter and float away.  I think life is slowing down a bit now, so I hope to get back to my blog ASAP, but nevertheless I wanted to drop in quick and update you all on our health statuses.

For Greyden, the last time I gave an update, we had found that his eosinophil levels in his esophagus had almost doubled and we weren't sure what we would do next.  Since then, we met with his allergist and dietitian and also took him to see a naturopath and had some food sensitivity tests performed. There were some conflicts in opinions on how we should proceed (which we expected), but after getting results and talking with everyone, we've landed on an agreed diet for Greyden. We've now additionally removed pork, fish, rice, cocoa, bananas, and yeast (which includes vinegar). Because he's so limited in the proteins he's allowed to eat, we supplement his protein intake using elemental formula, which we mix into his coconut milk, applesauce, pasta sauce, etc.  We aim for him to get between 13 and 16 grams of protein per day minimum and I try to monitor the amount he ingests as much as I can.  We're also trying to limit sunflower seeds and celery, as he showed low reactions to those in the sensitivity tests as well, although those are not a definite exclusion from his diet.

I've begun to try to help him heal from the inside out as much as possible.  I'm trying to keep his carb and sugar intake low in case he has any type of gut dysbiosis, which could lead to leaky gut and food sensitivities and would be exacerbated by high carb and sugar intake.  I'm trying to get as many nutritious foods into him as possible so his body has the nutrition it needs to heal, and I'm especially focusing on broadening his vegetable intake.  Per the naturopath's suggestion, he's taking several supplements to help his esophagus heal and to resolve any gut issues, including a strong probiotic, l-glutamine, quercitin, unda, and aloe vera juice.  Basically, all day every day I'm focused on getting as much nutrition and as little "bad" stuff into his body as possible to give him the greatest chance for beating this disease.

The PPIs were a point of contention in the midst of this, as they always are.  The allergist and dietitian think he needs to be on them, the naturopath is pretty strongly against using them right now (she understands they are sometimes needed, but wants to try other approaches first), and Dave and I are torn in the middle. After some discussion, everyone agreed that it would be acceptable to wait and see the results of his next scope prior to putting him on them.  His next scope is scheduled for September 9th.  So now we wait and see.

As for me, I was floating along well on my DHwRF diet, but as soon as my vegetable and carb intake started to increase, my GI symptoms got pretty bad.  I know, from past experience and my previous diagnosis with SIBO in January, that this means my SIBO has likely returned (which happens in close to 50% of cases).  I also know that I'm not going to heal from my autoimmune issues and get healthy until my body gets the nutrients it needs from my foods, and my body isn't going to get the nutrients it needs from my foods until I can actually eat them and absorb the nutrients, and I'm not going to be able to absorb the nutrients until I heal my gut and stop the SIBO from eating the nutrients before I get them.  Which left me at: must kill the SIBO.

So I did a lot of reading and research over the last couple of weeks and figured out an herbal antimicrobial plan for myself.  I started it on Sunday.  Based on the die-off reaction I had (I had a horrible autoimmune flare and felt like death for several days) and the fact that my bloating and gas pain are already reducing, I think it's working.  If it works, I'll share it here on my blog.  If it doesn't work, I will probably end up back at the GI doctor for some more antibiotics.  I'm not going to be able to progress with the DHwRF diet reintroductions until the SIBO is gone, because I basically get sick from almost everything I eat when my SIBO is bad.  In fact, I had started reacting even to some of my DHwRF safe foods, such as zucchini and ground beef.  It was crazy.  So I'm pausing from reintroductions with my DHwRF diet until the SIBO is gone, and then I'll be back to it. Hopefully it will just be a month or so. 

Alright, I think that's all the updates for now.  I'm about to head out of town (traveling yet again), so gotta keep this as short as possible.  I'll be back soon. :)