OMG, IBD? (and my experience with the Elemental Diet)

I wrote in February how I'd done 9 rounds of Chelation, for Mercury and Lead toxicity. I've since stopped getting IV treatments and (at the suggestion of my budget conscious Doctor) am currently taking supplements to continue chelating in a less expensive, yet effective way. 

The plan was to go back on the diet that had made me feel best in the past. My experience had shown that would be the Autoimmune Paleo Protocol, combined with a Low FODMAP diet. However, this time around I remained symptomatic. I was still bloated after 2 weeks on that diet (strange, for me). I was also still very tired most of the time, something that usually improves on this diet. The one improvement I DID (very happily) notice that improved after chelation was my skin! My acne has really diminished from 8 breakouts a month to maybe 1 or two spots.

I had spoken to Dr. Ruscio and Dr. Lalezar about the diet not bringing about similar results as it had in the past. Dr. Lalezar suggested we re-test for SIBO as there is a chance that it had come back. She also tested me for leaky gut, (an Array 2 for you test savvy readers) to get a sense of how permeable my gut is right now. Dr. Ruscio suggested, prior to me going back on AIP + Low FODMAP, that one option would be going on the elemental diet (an easily absorbable liquid diet) for a time to see if giving my guts a rest on breaking food down would improve my tolerance.

The other option would be to treat me for non-clinical IBD. This is a potential diagnosis for me. That I have an IBD (likely Crohn's due to my presentation of ulcers) but it doesn't present normally. This could be why the Gastrointestinal MD (Dr. Shaye) was hesitant to diagnose me with Crohn's after seeing my blood panel but thought it was likely that I had Crohn's after seeing my colonoscopy. Treatment for that would include a natural protocol of anti-inflammatory supplements/tinctures and making sure that I'm on the right diet for an IBD. (Dr. Ruscio is a "food first" doctor" he believes that for any of the natural/holistic methods of healing to work, you have to dial in food right for YOU first, then treat. I, clearly, am also very much on this train.)

 

My (Semi) Elemental Diet Experience

Of my own volition (because I hate waiting for doctor's for results and am trying to minimize costs) I decided to first try the elemental diet. I am familiar with three options for this diet: Vivonex Plus, Absorb Plus (which is a semi-elemental diet) and Homemade. The difference between elemental and semi elemental is protein and fat content and the size of the molecules you are absorbing for nutrients. Unsurprisingly, the larger the molecules get the more flavor improves. (I did Absorb Plus because apparently Vivonex tastes like the glue on a postage stamp (is made by Nestle, not the greatest track record for providing us with whole foods) and the homemade one you have to take like a shot because it tastes so bad.) For 6 days I drank a shake that tasted like the milk after a bowl of Kix cereal, not terrible. I remained bloated during the diet but that's not uncommon. It's still giving your guts a rest, even if that occurs. I had some reservations about it as the protein in the shake is from Whey and I don't do dairy on a regular basis. However, I don't have an allergy and despite any symptoms it would still be improving inflammation by reducing digestive work. (See the FAQs here about the soy and whey in the product, they calmed my fears.) This diet can also be used to effectively get rid of SIBO, but you have to take it for weeks at a time. I previously successfully treated my SIBO with anti-microbials, prescribed by Dr. Ruscio.

Things I noticed while doing the Absorb Plus semi-elemental diet:

  • I wasn't hungry but I would get very hungry if i didn't continually sip my shake. Dr. Ruscio's suggestion for me was to sip slowly throughout the day rather than DRINK a shake at mealtimes. This would help keep my blood sugar from spiking since I don't seem to do well with sugars or carbohydrates. This was a personal precaution but I think i could have probably taken it normally and be fine. I didn't have a problem with energy or anger the whole week (sometimes an issue with me and carbs!)
  • I did find some Casein Curds in my stool. I thought perhaps I'd swallowed a chunk of undissolved powder (that's what it looked like) but after a couple of these appearing and some intense internet research, I found that it's actually "casein coagula." I haven't been able to gather any information on why or how your body makes these little thumb-tip sized curds but it seems clear to me that my body was just trying to protect itself from the dairy and expel it. I noticed this happened again after having a raw milk latte at Mission Heirloom for my Birthday. I avoid dairy on a regular basis so this was a new experience and after I wasn't alarmed by it any more, I was more interested in the function. I can't wait to hear what Dr. Ruscio and Dr. Lalezar say about it. I'd never seen one before, and within this diet and one latte, I'd seen 3 over the course of a week.
  • I didn't weigh myself but I'm sure i lost a little weight. My pants felt less tight and the idea was to reduce bloating. I did feel like overall the diet was a good "break" for my intestines, to reduce inflammation and I was able to go back to AIP + Low Fodmap feeling like it was more tolerable and with less bloating.
  • I suspect that the treatment for chelation was very agitating for my system. I was symptomatic the entire time and was not strict about diet (more paleo than AIP or low FODMAP). This elemental diet was a good way for me to "reset" my system. Also, if my stool test comes back positive for SIBO again, it will also have been a good jump start to getting rid of it.

IBD info...

 My miracle anti inflammation drink. Homemade bone broth and juiced turmeric.

My miracle anti inflammation drink. Homemade bone broth and juiced turmeric.

My follow up with Dr. Lalezar for my SIBO and Array 2 results are in later this month. In the meantime, I had the fortune of coming across this podcast that Dr. Ruscio did on IBD! In it he speaks with Dr. Steven Sandberg-Lewis about his approach for IBD: supplements and diet etc. They discussed that the most useful diet for IBD, in their opinions, is the Specific Carbohydrate Diet (which I've mentioned here) combined with a Low FODMAP diet. They also talked about some supplements/nutrients that I take occasionally but not regularly, like curcumin (the anti-inflammatory component found in  turmeric root).

I've been doing AIP (cross referenced with SCD, GAPS, low FODMAP) for the past 2.5 years. So scaling back to just SCD and Low FODMAP would mean re-introducing some foods that I had an instinct weren't causing an issue for me but I wasn't quite sure and was too nervous to truly re-introduce them. I did not do what would have been the most thorough method, which would have been to try one food for 3 days to see how I react. I just jumped in. 

It's important to mention that during Chelation I was not super strict. Since i was so symptomatic from the treatment and chemicals floating around, I ate more liberally, fodmaps and some non-AIP friendly foods that I thought "were fine". I also think, that my wishful thinking about eventually being paleo in the future (which is so much easier than any of these diets, in my opinion) that I wasn't seriously considering FODMAPS my main issue. I think now, that I was wrong.

Last week, I converted over to SCD combined with Low FODMAP, the IBD specific diet. The symptoms of IBD really resonate with my experience and it seems like if that is the real underlying issue (now that mercury/lead are removed as toxins) then this should be the right track. I also had experiential evidence that tomatoes and spices had never really caused a reaction that I'd been aware of. So this was worth a shot.

Within two days, I wasn't completely not bloated but I definitely felt a difference. My pants felt lighter/less restricted, even after eating. My exhaustion didn't disappear but it receded (by about 2hrs less sleep). It seems like, FODMAPS and really focusing on fermentation in my gut could be the key to healing my leaky gut and also figuring out the "right for me" lifestyle and diet. I also noticed a new symptom that I hadn't before, either because it was lumped in with general un-wellness or I was confusing it with my monthly cycle. Intestinal cramping is happening to me if i have FODMAPS, like onions in my Chipotle Guacamole for instance (which, if you know me, is a TRAGIC symptom to discover). It feels like period cramps, despite not being on my period.

Over the past week I've been able to hone in on some things that are true for me, right now:

  • I cannot have any FODMAPs, even Avocado
  • I must stay strict on SCD (no starches of any kind that aren't "legal")
  • I can tolerate tomatoes
  • I can have (approved) drinks ONE night a week, two is pushing it, three is fully symptomatic.
  • I can only have dry farm wines right now, if at all.
  • I can have tequila or potato/corn vodka ONLY as liquour
  • Eggs, on occasion may be fine. Not pushing it.
  • I can have ONE glass of Kombucha a day
  • I can have coffee if I dilute it but 1 or 2 a day max
  • I definitely still have parasites. Doing another cleanse in april. Organic Olivia's is out now!

I do think I mentally blocked fermentation and FODMAPS as being the true possible culprit. For me, it's way easier to just eat tons of vegetables and proteins rather than a Low FODMAP diet. SCD already doesn't allow starches: grain is out, potatoes are out, sweet potatoes are out. Low FODMAP cuts out a ton of fruits and vegetables. This diet is very similar to what I'd already been doing but I can add back in things like: Eggs! Seed Spices! Some Nightshades! In hindsight, my GI doc, prior to my colonoscopy, mentioned they tried to get patients with Crohn's to go on a low FODMAP diet but it's hard for people to stick to. The podcast I linked to above also talks a lot about the science behind the digestive system, IBDs and FODMAPS/fermentable prone foods. Like AIP, this doesn't have to be forever! It can be a tool to help heal up the inflammation/ulcers and then you can re-test (by careful introduction), if over time you can tolerate more FODMAPS.

 AIP, SCD, Low FODMAP, GAPS and Paleo friendly dinner: Kabocha Squash, Duck, Wilted Chard.

AIP, SCD, Low FODMAP, GAPS and Paleo friendly dinner: Kabocha Squash, Duck, Wilted Chard.

So, with renewed vigor (and a little bit of disappointment about avocados and Chipotle). I am committing to SCD and low FODMAP. It's my way of doing field research before paying someone to tell me what to try next. Beyond that, I'll circle back with my Docs (and possibly may even re visit my GI doc to check in) to see about how to move forward with treatment. 

UPDATE 3/30/16

I spoke with Dr. Ruscio today and followed up with Dr. Lalezar this past Monday. The plan going forward is to focus on IBD therapy. That will include a specific probiotic therapy protocol, changing up the digestive enzymes that I take with each meal, experimenting with a semi-elemental diet from time to time (see Absorb Plus, above) and some other Crohn's/ IBD support supplements. In a month we'll check in to see how it's going. I'm also to experiment with a low fiber diet and see how I fare. Some people with IBDs have a hard time with insoluble fiber (see the podcast mentioned earlier for more info). We talked about FMT being a sort of "last resort" but it exists as an option and has been proven to help many people with Inflammatory Bowel Diseases. That's a little further down the road at this point.