Starting over, sort of

I met with my doctor this morning and talked about my inconsistent symptoms that now seem more correlated with constipation than anything else. When I'm taking Natural Calm (a magnesium supplement), I tend to feel a lot better than when I'm not, with a lag of a few days when I start or stop. In other words, it doesn't seem to correlate with any particular foods. He explained that the real reason for the low carb diet is to avoid feeding the bacteria, or encouraging them to come back, while the infection is healing. But we don't actually know whether the SIBO infection is actually gone. After taking the first round of Rifaximin, I've been doing the low carb diet for at least a month now without an obvious improvement. This means that my current symptoms might still be caused by SIBO (if I still have an infection) or else just from the constipation (the magnesium helps retain water in the bowels to relieve this). To get a definitive answer, I'm going to take the SIBO breath test again in about a week. Based on the results, we'll decide whether to proceed with the Rifaximin + Neomycin antibiotic combo or just treat it as constipation.

Here's the happy news. Until I go in for the breath test, I'm supposed to eat normally, in order to get an accurate reading of the levels of infection (or lack thereof). I finally ate a croissant today for the first time in two months! So yummy.

Too many questions, Too few answers

These past few weeks have proven frustrating. I was feeling great for 4+ days and thought I was healed -- I was planning to start on a probiotic and be on my way toward the 2-month mark when I could start experimenting with different foods. But then I felt bloated with constipation off and on for about 4 days, including one very bad day. Since then I've had another 4 mostly good days, although tonight I ate too much chocolate again and am feeling somewhat worse. During that timeframe I have also been experimenting with a magnesium supplement to help with the constipation, and have noticed that the constipation and bloating seem to happen in tandem. But it's not clear what that means, or if it was just a coincidence.

The diet is also making me crazy. I knew it would be hard, but I think I underestimated the absolute discouragement and desperation that comes from eating only large, meaty salads for about 70% of my meals. My sugar cravings continue in earnest. When I occasionally slip and eat something I'm not supposed to, I often eat a large portion because my willpower is so depleted. And at the end of the day, I don't really know whether it is making a difference. Do I still have SIBO? The fact that I don't feel completely better seems to indicate a "yes". But if that's the case, am I just wasting my time with the diet or could it actually be making a dent in the bacteria population?

At this point I would ideally want to take the breath test again to get some objective, quantitative data that would more clearly indicate progress (or lack thereof). The other option is to just assume that I still have SIBO and take a more toxic medication. This is what I had discussed with my doctor last time. But when I started reading about Neomycin Sulfate, the potential side effects sounded scary enough that I decided not to jump into that immediately:

Serious Reactions

• nephrotoxicity
• ototoxicity, auditory
• ototoxicity, vestibular
• neurotoxicity
• neuromuscular blockade
• malabsorption syndrome (prolonged use)
• superinfection (prolonged use)
• enterocolitis

Common Reactions

• nausea
• vomiting
• diarrhea

I want to feel better and I want to be off this diet, both as quickly as possible. But it looks like I probably have at least a few more months of this nonsense, and I fear that my courage may not last that long.

Must eat more chocolate

Good news. My body has been feeling great for almost a week now. I've been very faithful about the low-carb diet and haven't really felt bloated at all. No digestive pain or cramps either. Hooray!

But the diet is really hard. I wake up every morning thinking about fruit and yogurt, then by the time I get to work I have to convince myself to eat eggs and bacon. I still haven't really managed to eat vegetables for breakfast. At lunch I walk by all the yummy-looking trays of rice, beans, pasta, bread, cheese, fruit, and amazing desserts and end up with a heaping plate of salad and the meat of the day. Dinner is about the same.

I'm growing to appreciate blueberries, dark chocolate, and Diet Dr. Pepper (even though, as Ela rightly points out, "it's gross"). Those are the only sweet things in my day, which isn't much, but at least they help me deal with the sugar cravings and keep me from getting completely depressed about what I can't have. Maybe my body will eventually adjust to this diet and stop craving fruit, croissants, and cheese, but it hasn't happened yet. Each meal represents another exercise in willpower. My only consolation is that my body feels great. If I weren't for that, I don't think I could keep this up much longer. I don't know how people do this purely for weight loss! Evidently it works, but it requires so much motivation and willpower that I don't think I could do except as an antidote to chronic pain.

For those who are keeping track, this is basically the complete list of foods that I am allowed:

• meat
• eggs
• non-root vegetables (mostly leafy green things)
• nuts
• blueberries (1/2 c. per day)
• dark chocolate
• oil
• vinegar
• soy sauce
• spices
• zero-calorie sweetners (stevia, aspertame, etc)

Now I have a confession to make. I just stopped by Whole Foods on my way home and bought/ate a whole bar of dark chocolate.

The Plan

I had a great talk with my doctor this week, where he explained more about what's happening inside my intestines and answered a lot of questions that I'd been wondering about.

In fact, here's a quick plug for One Medical Group for people in SF, NY, or DC. It's a single clinic with a bunch of different offices, with primary care physicians and various specialists, including alternative medicine and nutrition. They charge $150 annual membership fee in addition to the normal office visit fees, and in exchange they try to really meet the needs of their patients, e.g. online appointment scheduling and email contact with doctors. I've seen 5 different practitioners so far and they have all been very knowledgeable, caring, and easy to work with.

Okay, back to my update.

It turns out I had some misconceptions about SIBO based on our earlier conversations. As he explained to me this week, SIBO is not just about having a bunch of bacteria in the wrong place, eating sugar, and releasing hydrogen/methane. Those bacteria really represent an infection in the small intestine, causing irritation/swelling/damage that will take time to repair. This was in answer to my question about "why do I need to be on the low carb diet for 2-3 months before experimenting with carbs again?" The answer is that my body needs time to heal in order to provide a stable platform for doing the food tests. If I started doing those experiments now, it would be hard to get conclusive results. Also, sending lots of sugars through my digestive tract might encourage the wrong bacteria to return and make the infection worse, since they love carbs. Eating low carb for a while will allow my body to heal while reducing the chance of a relapse. This makes a lot of sense to me logically, and in order to stay motivated about this restrictive diet over an extended period of time, it makes a huge difference to understand what's happening behind the scenes.

On the dietary front, I found out that I really shouldn't be eating beans or root vegetables at all (including carrots...see previous post). But there are a few bright spots when it comes to food. I can eat a few blueberries! I can also have alternative sweeteners like stevia and aspertame, so when I get a crazy craving for sugar I can drink Diet Dr. Pepper. Yay! I've never been a fan of diet soda before, but I found some stevia-based root beer at Whole Foods and compared to vegetables and chicken it's not bad at all.

For the majority of people, Rifaximin is very effective at eliminating their bloated/painful abdomen. It seems like it helped a little bit for me, but not definitively. So I will probably end up trying a different (somewhat more risky) antibiotic if I don't feel a consistent improvement in the next week.

In the longer term, after finishing the next round of antibiotics (or deciding not to do it) I'll start taking probiotics and maintaining the low-carb diet for a few months. After that my intestines should be healthy again so I can start introducing specific foods one at a time and seeing how my body reacts. When I get to the food experiments stage, he expected that I would be able to detect a food intolerance with symptoms that are a bit different from my current ones, most likely diarrhea and pain (swelling) in my abdomen after eating. I'm excited about that part -- debugging is one of my better skills!

But for now I will continue drinking lots of tea and trying to eat enough to stay alive and happy. I think I've lost about 10 lbs so far and I really wasn't trying to. It's just hard to overeat when your diet primarily consists of eggs, chicken and lettuce. A person can only eat so much leafy green stuff in a day.

I should have another update next week after we decide what to do about the antibiotics. In the meantime I'll be experimenting with new recipes and indulging in bacon and sausage.

Bad Days

My follow-up doctor's appointment on Thursday can't come soon enough. I was doing pretty well last week, despite eating some things that weren't on the approved list (mostly fruit, and occasional sweets). In fact, I even had a few days where I didn't feel bloated at all -- I could hardly believe how happy and attractive it made me feel. My idea over the holidays was to try one experimental food per day, while still avoiding most grains and milk products. In essence, this meant that I allowed myself to eat some fruit, mostly oranges. That didn't seem to be causing any problems, so on New Years Eve I splurged and had several large bowls of fruit salad, then added on some chocolate and cookies, and topped it off with some sparkling cider to ring in the new year.

Eating a large meal with lots of carbs for dessert probably wasn't a great idea, I grant you. But for three days now I have felt like there is a large balloon in my gut that refuses to deflate, even though I'm eating strictly low-carb and in small quantities. It's lasted so long that I begin to wonder if it could really all have been caused by that one meal. Perhaps there's more to the story. I had been taking Rifaximin to (hopefully) kill off the excess bacteria in my small intestine, but the 2-week dose ended just one day earlier, on Dec 30th. Today I ate two salads and some peanuts, and drank a lot of tea. Now my belly hurts worse than ever, and I think I'm probably starving, but my stomach recoils at the thought of putting anything else into the digestive path. Nothing sounds appetizing anyway -- nothing on the low-carb list, anyway. This diet has really taken away all of my comfort foods. And it requires extensive willpower for elusive benefits. I find myself getting irritable earlier and earlier in the day, as my resolve turns to depression and desperation. A person can only drink so much tea.

It's hard to believe that I've only been doing this for under 3 weeks. It feels like forever. I knew the holidays would be a hard time to start such a restrictive diet, especially when staying with family and celebrating special occasions. And it was, even though I still ended up having at least one high-carb item on about half the days. It's amazingly difficult and depressing to avoid eating any of my favorite things: fruit, pasta, ice cream, french bread, chips, chocolate, cheese, potatoes, rice, Dr. Pepper, and chai lattes. The only snack food I have left is carrots. The only liquid I have left is water/tea. I know that in the end this is all for my benefit, so it's really not fair to complain, but it's miserable to still have all the bad symptoms despite such a dramatic dietary change. Even thought I haven't maintained the low-carb diet perfectly, it's still a huge shift compared to what I would normally eat, that it seems inconceivable that I could be right back where I started after only a few days of happiness in the middle.

Hopefully I will have a more cheery update to post later this week. The world looks pretty gray right now.