Slow: Curves Ahead

I am in a strange no man’s land. For the first time in a long time, I *think* I hit zero on the pain scale recently.

During the summer of 2015, I was battling ever-increasing headaches and migraine attacks. I haven’t had a pain-free, symptom-free day since July 2016. My baseline has hovered between a dull ache and moderate pain for about two years. There have been days that I was functional, but if I stopped to think about it, migraine was there. Then, I had a seemingly random good stretch back in November. For five glorious days, my symptoms stayed at an ignorable level and I didn’t need to play the medication shuffling game. Unfortunately, it was short lived. I was at the tail end of Botox cycle and my December round was a complete dud. My attacks came back per usual.

So that is what has made these last few weeks so hard to figure out. I started another new preventive medication about six weeks ago. It wasn’t expected to be a powerhouse addition to my regimen of three (!) other medications, though. We’d just run out of things to try and after working through a list of what was left, this was one of the last viable options. I also had another round of Botox in late February. A different doctor did it and varied the injection site locations ever so slightly. Does that matter? It seems to depend who you ask. So I’m left wondering if I just got an unusually effective round of Botox, better than any I have had in the past year(+). Or whether a preventive that was really not expected to help *that* much, might be making a difference. The only way to know will be to wait and see. If it is Botox, it will wear off any minute and I will have an answer. That sure helps my anxiety.

In the meantime, my mind is doing other things I don’t appreciate. It’s making plans. It’s thinking ahead. I was talking with a friend who also has chronic migraine and other chronic illnesses, and she agreed that this “in-between” is a hard place to be. Even if it is brief, it is a glimmer of our old life, we’re not as disabled as we once were. In those bed-bound times, it was easy to miss our old lives, but we didn’t tend to make any new plans. These last few weeks have me starting to think, “what if?” That’s potentially dangerous.

I was recently reminded that healing isn’t linear. I have to prepare myself for the inevitable collapse of this fragile healing. It will come. I haven’t quite figured out how to handle these inevitable slips. The best I can do is keep in mind that I have had these good days. They are possible. Each stretch seems to get a little longer. New treatments are coming. These are the matras that cycle through my head as twinges of pain return, triggering anxiety and fear that the streak is coming to an end. I consider this more preparation than pessimism.

What do you do to maintain your resolve on this not-so-straight road we have to travel toward healing?

 

Let Me Tell You About FODMAPs… and IBS

A LITTLE BACKGROUND

I have talked a lot about having migraine, but I also have irritable bowel syndrome (IBS). A few weeks ago, a magazine that focuses on living well with pain conditions posted a question on Facebook seeking people who follow the low FODMAP diet for a story they were writing. I commented that I had been following the diet for four years as a way to manage my IBS. The writer sent me some questions and, as any good blogger would do (or, maybe, just me), I wrote way more than she needed for her article. The article has a lot of great background information on the diet, but she seemed to pull out a few of the stranger details I provided in response to her question. (Oh well!) I figured that since I wrote so much, I might as well polish it up as a blog post in case it helped someone with similar gastrointestinal issues.

In case you don’t want to hop over to the Pain Pathways article, I’ll share just a little background on IBS and the low-FODMAP diet. Overall, it is estimated that about 15% of the world’s population – or 1 in 7 people – have IBS. Like migraine, it tends to affect women more often. The low-FODMAP diet is the primary way I manage my IBS symptoms. The acronym “FODMAP” stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. What are these? Simply, they are sugars. More specifically, they are short-chain carbohydrates that can be hard to digest because they are poorly absorbed in the small intestine. By poorly absorbed, I mean their digestion can produce gas and contribute to constipation, diarrhea, cramps, and bloating. All the fun hallmarks of IBS! The tricky thing about FODMAPs is that they are in a variety of foods and products: fruits, vegetables, additives, and sweeteners, for example.

Researchers at Monash University are leading research efforts on FODMAPs. They’ve found that up to 75% of people with IBS can successfully treat their symptoms with the low FODMAP diet. The diet is done in three phases: an elimination phase, a reintroduction phase, and then an adapted phase. If you are really interested, I recommend going to the Monash website or checking out the Pain Pathways article. As you read through my experience, you’ll also see why I highly recommend that you work with a dietician at first. If you have questions, please don’t hesitate to ask me. I am happy to help, but this post is long enough as it is, so I won’t bore you with more. [Here’s a link to a shorter version about my IBS story more generally.]

**Edit: A few more words about working with a dietician: I’ve offered some of what I consider to be the best resources available, but there are many more. As you start down the rabbit hole of any elimination diet, you will quickly find dozens of lists of foods to eat and foods to avoid. Just as quickly, you will see these lists contradict each other. You can try to do it alone, but I really feel that you will see the best results if, at first, you work with a professional who can help you navigate the lists and guide to you the right foods to eat so you’re not being overly restrictive. It’s not a perfect science, but they often can point you to the best science!

THE INTERVIEW QUESTIONS

What is your specific health condition that led you to try a low FODMAP diet?

My gastrointestinal problems initially started after I got sick on a trip to Costa Rica and was treated with months of harsh antibiotics. They wrecked my GI tract – stripping it of all my gut microbes, good and bad. In the end, with the exception of ending up lactose intolerant, I eventually recovered and managed to live relatively normally for years. Unfortunately, my symptoms worsened dramatically about four years ago after a very stressful period in graduate school. After eliminating other conditions like celiac and inflammatory bowel disease, I was diagnosed with irritable bowel syndrome (IBS).

What else had you tried to do prior to changing your diet so dramatically?

Initially, my doctor prescribed a medication that was supposed to ease some of my IBS symptoms, but it had little effect. I also was given a course of rifaximin even though I tested negative for SIBO (small intestinal bacterial overgrowth). Unsurprisingly, that only seemed to help for a short time. Over the course of months, I tried to regulate my IBS symptoms by increasing my water intake and with various probiotics, fiber supplements, and laxatives. It was a constant balancing act, so to speak.

 

What were your biggest challenges in moving to this kind of diet?

Initially, my biggest challenges were figuring out what I could eat and keeping weight on.

Bathroom Scale Eat Horizontal Control Weight

I think I lost about 10 or 15 pounds at first, which was a lot for me. However, my gastroenterologist was the one who suggested the low FODMAP diet as a way to manage my IBS symptoms and, luckily, he also suggested a dietician who was part of the same hospital system. She was really helpful in providing grocery shopping lists and meal-planning resources. In passing, I also happened to tell a friend at work about my health challenges and she shared that she was going through a similar situation. She was pointed me to Kate Scarlata’s website and the Monash University resources. Kate might be one of the best known low FODMAP dieticians in the US. Monash University is basically the center of low FODMAP research. They carry out tests on foods and rate the FODMAP content. They even have an app you can use to track FODMAP levels of foods.

Still, looking at the resources, it was easy to see all the foods I had to stop eating, but harder to think about what I could eat and what I could substitute to keep my meals interesting. These resources included some low FODMAP foods, but often I’d wonder about a food that hadn’t been tested yet. It was overwhelming at first. I remember the first few weeks I ate the same few foods.

Are there any foods that are complete no-nos, like: wine, beer, coffee, bread?

This is a little complicated to answer because, currently, my IBS story is complicated by migraine. I have had migraine since high school, but about two and half years ago, my migraine attacks transitioned to chronic. I have chronic, daily migraine attacks. On top of the low FODMAP diet, I’ve further limited my diet to try to remove migraine triggers.

As far as the low FODMAP diet, I usually start by telling people I eat gluten free, lactose free, and cannot have onion or garlic. Those are the easiest to explain. Harder to explain is the concept that FODMAPs are actually hard to digest carbohydrates found in most categories of the food pyramid. Proteins are generally safe, but when it comes to fruits and vegetables, I can have some, but not others. People find this hard to understand sometimes. For example, how can I eat blueberries, but not apples? Why are green beans safe, but not green peas? Similarly, it can be hard to convey the idea that it depends on the serving size whether something is safe or not.

Since my IBS flared up about four years ago, I’ve been on the low FODMAP diet. It isn’t intended to be a diet you stay on long-term. You are meant to re-challenge foods. When I had to start eliminating migraine food triggers and my diet became even more restricted, it was important to start testing whether my body could tolerate certain higher FODMAP – but migraine safe – foods. I’ve been able to reintroduce a lot of high FODMAP fruits in moderation – apples, peaches, pears, and cherries. I’ve also continued to work with a dietician to make sure I’m managing all my dietary restrictions well.

Is it hard to eat out?

Eating out can be hard, yes. However, a lot depends on the restaurant. Now that I have to accommodate both my modified low FODMAP restrictions and my migraine food triggers, many foods on the menu are off limits.

menu

When I was only following the low FODMAP diet, I would often ask friends and family to pick a restaurant with an accommodating menu. As long as I could get an unseasoned piece of meat or fish with a salad, potato, plain rice, or French fries, I was usually safe. More and more restaurants offer gluten-free/low-fodmap breads, so sometimes sandwiches and hamburgers were also options. Many sushi options were safe, so that was a popular go-to for takeout.

I know one hot topic is food sensitivities. Restaurants are generally good about gluten restrictions because of the number of people with celiac disease. But because things like garlic and onion are in so many dishes, I would often tell the server I had an allergy to ingredients like these. I didn’t feel good about doing this and I know admitting this opens me up to possible criticism from people with real food allergies. On one hand, eating onion wasn’t going to send me into anaphylactic shock. On the other hand, I wasn’t telling this little white lie because I simply didn’t like onions. Eating hidden FODMAPs while out to eat in a public place has had real consequences for me in the past, but explaining why I couldn’t eat so many things got complicated. There’s a perception that people with food sensitivities are just picky and that food sensitivities can’t be serious. That isn’t true, so I think that’s something that needs to shift. I admit, lying about being allergic is probably not the best way to handle it, though.

Give me an idea of your grocery list. What have you found that are good substitutes for things you used to eat?

Thinking back to before I had to worry about migraine food triggers, I now don’t think of the low FODMAP diet as all that restrictive. I feel like I could adapt almost any recipe. I guess that was a big difference, though: it became a lot more home cooking and a lot less restaurants, take-out, and processed foods. To satisfy my take-out cravings, I would make

cookbook.jpg

stir frys out of safe low FODMAP vegetables, gluten free soy sauce or sesame oil, and rice or rice noodles. Cabot brand cheddar cheese is lactose free, so a favorite comfort food was homemade mac ‘n cheese using Trader Joe’s gluten free pasta. More and more companies are making low FODMAP products like sauces, salsas, and seasoning, but they can be pricey. I made my own salsa, and batches of my own pasta sauce and chicken soup. The tricks were subbing chives for onions and garlic infused olive oil for garlic.

What is the challenge with keeping food flavorful? Any other cooking challenges?

I don’t really think lack of flavor is ever an issue in my low FODMAP recipes. The biggest challenge really is how much “from scratch” cooking I feel like I need to do.

How effective has the low FODMAP diet been in relieving your condition?

The low FODMAP diet has helped keep my GI symptoms in relative balance better than the preventive medication I was prescribed.

Do you think you’ll continue eating this way indefinitely? Why or why not?

There is no cure for IBS, so diet will continue to be the primary way I manage my symptoms. That said, now that I’m challenged by two chronic conditions that require dietary restrictions, I think I’ll need to continue trying to reintroduce some higher FODMAP foods. Between IBS and chronic migraine, I’ll be honest, my IBS symptoms are currently milder and if I have to be strict about one diet, it will probably be managing my migraine food triggers. If I can tolerate some gas and bloating in order to add in a new food that is migraine safe, but higher in FODMAPs, then I’ll take it. Of course, any high FODMAP foods that have more serious GI consequences will stay off the menu! I still have flares and swings, and medication changes can wreak havoc on my GI balance, so diet plays an important role in managing my IBS.

I also know there’s emerging evidence of a strong brain-gut connection. So although some foods that are good for my gut, can trigger my migraine attacks, I’ll try to find ways to slowly add them back in as my body allows.