Archive | Gluten Free RSS feed for this section

The Conundrum

2 Mar

Since my last update things have been reeeeeal up and down. But I guess that’s the nature of life. The SCD diet provides you with little guidance after the 3-4 day intro, so from my own experience here are some things I’ve noticed:

1) Nut flour = hard to digest so soon. I’m thinking they are something to introduce after a month or two on the diet.

Be weary. Be very weary.

2) dairy = no good for me. SCD yogurt = no go, aged cheddar didn’t work either. I am bummed to say the least.

3) cooked apples and peaches = delicious but far too easy to eat too many. I have yet to try making applesauce, maybe that’s where I should have started.

5) Sliced bananna with honey is a nice dessert, but I’m weary of bananas being so high in sugar, so I haven’t been foxing around with them too much.

6) Bolthouse Farms smoothies – strawberry banan in particular – seem to be ok, though who knows what “natural flavors” consist of.

7) Orange juice needs to be seriously diluted. I need that Vit C as a co-factor for the iron I take 2 x a day, but damn is it hard on the stomach.

8) I love hamburgers, partially because I have to. That is a fact.

Minus, you know, all the fixins.

9) Homemade mayonnaise is hard to make. I’m currently 2 for 4. I have a recipe I will share, I think I finally know what the determinate factor of success is.

10) Still up in the air on eggs. SCD says not to eat if you have D, but I’m not sure if they trigger my symptoms or not.

I will say that I found an SCD legal brand of olive oil mayo from Spectrum, and it is the bomb. Far better than any other mayo’s, let alone one I make myself. As a child of the midwest in the 80’s, you can imagine I was all about the Tangy Zip of Miracle Whip. This spectrum mayo has all of that deliciousness with none of the Monsanto-injected poisons.

Condiment Queen

I’ve also been all about the honey + brown mustard combination since that too is SCD-legal.

As of late,
the biggest challeng has been dealing with prednisone-induced acid reflux which is compounded by all the protein I’m eating. I wonder if increased acid production causes D? For the past three days, here’s the cycle:
1) I get bad heartburn at night, followed by cramping and D the next morning.
2) I feel super rotten until 10a, at which point I feel great.
3) Reflux resumes after dinner.

I feel like this recent diabolical trend is not typical for my UC, but a result of the heartburn. Who knows. Avocado and banana seem to be good buffers to heartburn, I’m going to try pureed cooked carrots as well. I also take protonix twice a day. Last night I took baking soda with water per the instructions on the box as a SCD-legal remedy for heartburn. Worked pretty well but I woke up with chipmunk cheeks – when you’re on prednisone, Sodium intake is what causes moon face… so cut your salt and you get your cheekbones back.

In terms of my long term healing plan, I got a 2 stage approach figured:

Step 1: Go on SCD to get symptoms under control.
Achieve a realistic remission (no cramping, no urgency, normal relief patterns, etc) for a certain amount of time.

Step 2: Undergo 5-10 Human Probiotic Infusions (HPI) per the at-home instructions from Dr. Borody, one per day.

It seems that Step 1 is going to take some time. I’m gearing up for a trip to Germany at the end of April. In an ideal world I’ll do the HPI’s before then so I can hopefully tolerate a wider variety of foods. But we’ll see. In the meantime look out for SCD recipes!


Three weeks later

19 Feb

Per usual I am late on updates.

To summarize, the practitioner who agreed to take on my case for fecal transplantation backed out (no pun intended) on the morning of the procedure. She had only done transplants on two other patients with UC (both of whom she was treating for C diff) and it triggered flares in both of them. For her it was a comfort issue, I also didn’t keep her in the loop with my other providers, so she wasn’t sure where I was with my care, etc. Lesson to be learned: communication is key, all around…

Yet no matter what, I had done all of the prep (64 ml of Gatorade + 55g of Miralax) and reaped none of the rewards! However, a good cleanse can make you feel quite right from time to time. For the first time in a little while, I had no abdominal pain. Nothing in your belly equals nothing to screw up your day. No complaints on that end.

I decided to use the bowel prep as an opportunity to start on the SCD diet. Something I had been meaning to try, but it’s just so damn strict you can’t really casually kick into it without some sort of sudden change. Unfortunately despite what I was eating, my symptoms were coming back rather strong. I was in the middle of tapering off cyclosporin to 1/3 of the full strength dose, and I don’t think I was ready.

I did the SCD intro diet as prescribed for the first three days. On day 3 I made homemade yoghurt which did not sit well with me after 12 hours. I also noticed I couldn’t do tea or anything sweetened with too much honey. I was chatting with Traci over at thepowerofpoo who has undergone HPI (human probiotic infusion, aka fecal transplantation) for IBS and she referred me to SCD lifestyle – a website/podcast/life manual made by Jordan and Steve, two fellows who’ve got the SCD diet down to perfection. Their version of the intro diet cuts out all dairy, which for me worked far better.

I also found a cool app for my iphone that’s a more realistic for me to use than a physical food/symptom journal. The app is called AllergyDetect, and though I’m not looking for any allergies, it shows you any correlation between food and symptoms over a range of time.

Despite all that, I was still having bad frequency/urgency and the like. Around day 5 or 6 things weren’t getting better, then BOOM came the fatigue. I went back to the hospital on day 7.

I will talk more about my latest internment in my next post, but I want to say that now that I’m out with my meds ramped back up, the SCD diet is definitely helping. If anyone is interested there are tons of resources in the world wide, just ask questions! Buy the book, read up on the science; the concept is sound. I will say it’s very difficult being on such a limited diet, a lot of which includes high fiber foods which you need to add in one at a time very SLOWLY… but I’ve been having my fair share of fruit smoothies and I feel like a kid again. Yeah it’s 7p, and I’ll be having some grape juice with my dinner.

The Reckoning – Taste and Smell

4 Dec

So that first week in ye olde hospital was interesting to say the least. Something about being sick or being on prednisone made me super sensitive to smell during that time. Before being admitted, when I was trying to recover on my own at home, Andreas had bought me a monstrous bouquet of flowers. I think it was two or three bouquets combined and he made sure to put a few lillies in them because they are my favorite. At least to look at. I won’t lie, the sickly sweet smell of those flowers made me ill. One evening I turned in a little early and went to lay in bed. Like a sweetheart, he went to grab the bouquet so I’d have something pretty to look at in my periphery. I didn’t want to be a bitch – “your flowers smell disgusting, get them out of my sight”, but I had to finally tell him I couldn’t handle the smell anymore.

The first bouquet from Andreas that sparked a 2 year lilly affair.

When I was first admitted, everyone was being nice and asking me “where to send things”. I was very upfront – here is the address, ” please do NOT send me things that smell.” So my grandparents, being the beautiful caring people they are, sent me a couple of foil balloons, a teddy bear and a box of chocolates. Chocolates, for someone like me who was on a heavily restricted diet at the time, were also a no no. But I won’t lie – I nibbled the hell out of those things. And by nibbled I really mean nibbled; I took a tiny microbite of almost each one. Definitely regretted it later but HEY, you gotta live sometimes.

Living Large, week 1. I deserved to nibble on those chocolates.

On that tip, I don’t consider myself a really disciplined person when it comes to food. Based on what I’ve just written regarding my chocolate nibbling, I don’t expect this to be a shock. I think of my ulcerative colitis as a lesson in psychology – namely self control. According to the Ainslie-Rachlin Model of Self-Control (Ainslie, 1975; Rachlin, 1974), the value of a reward changes in relation to how much time is left before you receive it. The closer one gets to receiving a reward, the more valuable it is, the less self control you have. I read somewhere about a study where young kids, say, 4 year olds were offered either one candy bar today or two candy bars tomorrow, and most often these children chose to receive one candy bar today as it had higher perceivable value; they could just taste it! When six year olds were asked the same question, they most often chose the greater payoff at the expense of waiting a day. So theoretically we build more self control with age.

UC has pretty much screwed that up for me though. Though it’s forced me to cut things out cold turkey – which some might say takes a lot of discipline – but I’m not consistent enough; the lack of normality impedes having well-maintained levels of self-control overall. All my dietary restrictions have increased the value of the reward – the immediate satisfaction of taste. Add to that the fact that it takes 6 – 12 hours to know if a food I eat has actually triggered symptoms, and we have a picture perfect case of chocolate deliciousness now vs. abdominal discomfort later. If I feel pretty good one day and let *something* slip with my diet, chances are that same day I made multiple exceptions. As of late I am predictably hurting the following day, at which point I return to my usual foods. It becomes this pendulum of lenience and strictness, giving in one day and being a hard-ass the next. I can’t help but wonder if this mental aspect of my eating complicates or even worsens the disease itself. Maybe all this internal debate causes me stress, too. Why oh why can’t we all just eat pepperoni bread 24-7 in harmony?

Side note: Fabulous gluten free pepperoni bread recipe. Make sure to sub in white cheeses though, I found swiss and mozzarella together worked well. I don’t know what that crazy lady was thinking fooling around with cheddar.

ANYWAY, back to the flowers. They stunk. Coming away from the hospital experience there are three scents that really make me sick just thinking about them. One is the smell of lillies – pretty much done-zo for me. The second is the smell of the hospital soap in the bathroom. I can’t even show up as an outpatient for labs without smelling that stuff and being immediately transported back to the 7th floor inpatient suite. Third smell is in my bathroom at home – it’s a linden flower soap I had recently purchased on my yoga retreat trip just prior to this epic. It really has a nice smell, but I can’t help but associate it with the feeling of fragility and sickness. I remember one time specifically where I mustered up the strength to stand long enough to shower, then afterward I basically stumbled upstairs to my bedroom and collapsed on the bed, without moving, for a good 20 minutes. I was just lying on one side, staring at my red plastic laundry basket, breathing. It’s crazy how smells can immediately take you back to those places. In the forefront of your cortex is the conscious effort to move on, yet at one whiff your subconscious yanks the leash to pull you back. No, you remember this. This was pivotal in your development and you are not allowed to let it go.