Tuesday, August 19, 2014


I haven't felt well for a long time. So long now that I don't remember what living without pain feels like. After months of increasingly frequent episodes of acute pain, along with a lot of free time on my hands, I finally decided to do something. What I mean is, against my natural instincts, I went to the doctor.

And that's how I ended up with an unclear diagnosis: probable fructose malabsorption, lactose intolerance, gluten intolerance (Celiac), and irritable bowel syndrome. The all encompassing term to describe my digestive system ailments is that I have a "functional gastrointestinal disorder" or FGID for short.

What I mean by unclear diagnosis is that, despite pretty definitive testing methodology, my food intolerances are each on their own continuum. I am somewhere on the spectrum for what I can tolerate (for example, I'm very low on the Celiac spectrum). According to my team of GI doctors, the understanding, and subsequent diagnosis, of digestive disorders is relatively new in the gastrointestinal world and these doctors (specialists) are still learning what it all means.

What it means to me is the difference between living life to its fullest, and not being able to leave my home or even sleep most nights. My intolerances have become debilitating, to say the least. And I still don't really understand them quite yet. At the beginning of this journey I had a feeling I'd be working with a GI for the long haul. And, true to form, I am. I'm working with three amazing GIs, have taken five tests (more to come), and, of course, spend every day reading about every possible condition on the internet. WebMD is a good, if not insanely dangerous, companion, since my medical training consists of being the daughter of a doctor (meaning not very solid).

My lactulose hydrogen breath test.
Used to diagnose small intestinal bacteria overgrowth (SIBO)

Unless you've been living under a rock, you know that there are a million stories going around the internet about how humans should avoid gluten, stay away from dairy, and eat like cavemen. Despite being an avid learner, reader, and internet browser, I am not a food fad subscriber. 
The thought that I may have to cut out entire portions of a certain type of food I love to eat is scary for me. I don't typically discriminate against food.

But I am now on a diet. Or at least I will be shortly. Once we know where the pain is coming from. First up, my small intestine. I'm finishing round one of a high dose antibiotic treatment. Xifaxan, the antibiotic of choice, targets my gut specifically. Whatever bad bacteria has infiltrated itself into my small intestine, its days are numbered. Xifaxan will kill the bad bacteria, keep the good. Pretty powerful stuff. 

Except that I can't get Xifaxan. After weeks of back and forth with doctors, pharmacies, and insurance companies (in at least two countries) Xifaxan is out of my price range (approx. $2K for the 42 pills I need to complete a two week regimen). Instead, I'm on a much harsher all encompassing antibiotic; Cipro. A travelers go-to miracle drug, its job is easy; kill all the bad bacteria in my gut.

But, it doesn't end there. I'm currently also using elimination diets to find out which specific foods I can and cannot tolerate. Almost everyone I meet has a suggestion for what I should eliminate from my diet. I hear a lot of, "you can't eat dairy, right?" and "if you tested positive for Celiac (which I did), then you can't have any gluten." But only I know what exactly I can and cannot eat. Because my gut is also not a food fad subscriber.

Once the bad bacteria is gone from my small intestine, it will be time to rebuild the good bacteria and manage the stomach pain (by watching what I eat). So, fad or no fad, I will be living a low FODMAP diet. 

FODMAP stands for "Fermentable, Oligo-, Di-, Mono-saccharides and Polyols." I realize that's a lot of vocabulary, but it really means that simply restricting FODMAPs from a diet has been found to have a beneficial effect for sufferers of irritable bowel syndrome, SIBO (small intestinal bacterial overgrowth), and FGID. That's me in a nutshell.

FODMAPS are a group of short-chain carbohydrates that are not very well absorbed in the gut (small intestine). These carbohydrates are easily fermented and cause fluid to enter the large bowel. Reducing the total amount of these fermentable sugars may improve IBS symptoms.


The low FODMAP diet list was provided to my by my doctor. It doesn't look like any fad diet I've ever seen. But that's because it isn't a fad. It's a lifestyle prescribed for me by a team of specialists.

What am I supposed to eat for the rest of my life? According to the low FODMAP plan, I can eat spinach, plain chicken, white bread, white rice, and potatoes. Ugh. Fortunately, over time I can introduce new foods into my diet to see if I can tolerate them or not. It's like learning to eat all over again.

I will admit that when I started to look into this diet plan I had no idea where to start. I needed a list of foods to eat. And a list of foods not to eat. And I needed it to be all encompassing. Should I eat any sugar at all? How will I know if what I'm eating is made from glucose, fructose, lactose, galactose, or sucrose? It has been overwhelming, to say the least. At least there's an app out specifically explaining the diet plan. 

I've also been thinking a lot. For example, if I choose not to go on a low FODMAP diet plan, will the bad bacteria come back? What about even if I do stick to the plan? And am I doing myself long-term harm by having eaten off the charts before?

To help answer some of my questions I have armed myself with books, websites, and of course my incredible team of doctors. My goal is simple: to live pain free. I think I'm on the road to learning how its done. But I'm a long way from having any clear diagnosis. 

In my immediate future are more tests; more watching and waiting and elimination diets. And possibly antibiotics. And when its finally time to get down to diagnosis, I'll have to undergo a small intestinal biopsy performed with an esophagogastroduodenoscopy (EGD). I'll spare you the details, but tissue samples will to be taken from the cell wall of my duodenum and varying parts of my small and large intestines and colon.

All I have to say is bring it on. I know it may sound a little backward to say I have to limit my fruit, vegetable, and wheat intake, but trust me that I do. I just want to get through the day without being in constant pain. And I also suspect that keeping my stomach healthy will contribute to my overall health and longevity. I'm in this for the long haul.

For more up to date research, including Xifaxan (Rifaximin) for treating SIBO and IBS, as well as more information about a low FODMAP diet, check out this article recently published in Health. http://news.health.com/2014/08/11/experts-issue-guidelines-for-treating-irritable-bowel-syndrome/


  1. Anonymous8/19/2014

    Tip if you decide you want to give Xifaxan a go (I need it every few months):

    If my doctor prescribes it the way it would be written for its intended, FDA-approved purpose (for hepatic encephalopathy), the insurance company seems to not notice as quickly that it's being used for what I'm using it for. With this, I get about a dose and a half (3 weeks worth) for less than half the price of what I was originally getting for one round. My doctor doesn't SAY that's what it's for, he just writes the prescription for the dosage/amount typically used for that. Worth a shot.

    1. Thanks! I received an official letter from the insurance company telling me the three reasons they denited my claims (twice). 1. the prescribed amount of 42 pills was too many for SIBO. 2. They requested a copy of my breath test and didn't receive it. 3. I needed to try 3 antibiotics unsuccessfully before they'd okay Xifaxan. At least they offered me an "explanation."