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My IBS Story

April is Irritable Bowel Syndrome (IBS) Awareness Month. I’m supporting Kate Scarlata’s #IBelieveinyourStory campaign to increase IBS awareness, fund research, and improve patient care. Many of you have already heard my story, but for those who haven’t, here it is…

You can appreciate the mid-80’s feathered bangs and purple cable knit sweater, but can you guess how old I am in this picture? This is me in 7th grade! I was a gymnast at the time, small for my age, and clearly a late bloomer. Just a month before this picture was taken I went to my pediatrician for my sports physical.

During the physical, my mom and I mentioned I was having a lot of diarrhea. (Side note: My mom’s sister had ulcerative colitis, which tends to run in families.) He must have taken my symptoms seriously, because he referred me to a gastroenterologist who then ordered stool studies and a barium enema.  The stool studies involved pooping into a cup for three days in a row, then delivering my sample to the doctor’s office.

The barium enema procedure, which (thankfully) isn’t used very often anymore, was a traumatic experience etched in my thirteen-year-old memory. For two days before the test, I had to clean out my digestive tract, similar to a colonoscopy prep. Only back then, they didn’t have GoLytely or MiraLax. I had to drink castor oil mixed with orange juice. (I didn’t drink orange juice again for ten years!) I also had to follow a specific diet and give myself a fleet enema.

The barium enema test itself involved laying on a tilted x-ray table while someone inserted what felt like a ginormous rectal tube. For some reason there were about 15 people in the room to “help” or observe my procedure. As you can imagine, I was mortified– laying there awake, naked from the waist down, a rectal tube in place, and 15 people watching.

They alternated squirting the barium contrast and air into via the rectal tube into my colon while having me move into different positions while they took a series of  about 50 x-rays. At one point, the tube slipped out and the nurse patted me on the shoulder and said, “Don’t worry honey, we won’t have to put that back in.” My relief was short-lived. Someone returned a few minutes later and said, “Sorry, but we have to put the tube back in and get more x-rays.” I was so thankful when they finally had enough x-rays to get an accurate result and the test was over.

And, if that memory wasn’t enough, I had rock-hard white poop for the next 3 days, as the barium turned into concrete before it passed. I happened to be camping with my friend’s family that weekend, and we were using outdoor vaulted pit toilets, which made it interesting.

Needless to say, the results of the stool studies and barium enema were negative, which meant I did NOT have ulcerative colitis. Yay!

A view of the contrast during a SBFT.

But the gastroenterologist didn’t stop there. I also needed to be checked for Crohn’s disease, which, like ulcerative colitis, is in a family called Inflammatory Bowel Disease. This test was called a small bowel follow through (SBFT). Again, due to advancements in medical technology and imaging, this test is now used infrequently. In this test, I drank two cups of 48 oz of chalky thick contrast (my good friend barium again). I remember gagging and crying as they made me drink more than I typically drank in an entire day in just a few minutes. Then every 30 minutes they would take an x-ray to monitor the contrast was traveling through my stomach and small intestine.

Several days later I received more good news… I didn’t have Crohn’s disease either. Yay! But that didn’t answer why had so much diarrhea. There weren’t any more tests they could do, so I was one of the thousands (maybe millions) of people given what they called a “diagnosis of exclusion”… irritable bowel syndrome, aka IBS. We now know that IBS affects 25 to 45 million Americans, or 1 in 7 people. And 2 of of 3 IBS sufferers are female!

In the next few years I had more stool studies and a flexible sigmoidoscopy, similar to a colonoscopy only I was awake during the procedure. It was very painful and a part of my childhood memories. The tests were always negative, which was good. But there was no clear reason for my symptoms.

When I was about 16, I connected my symptoms with eating dairy, especially milk, ice cream, and certain cheeses. I avoided dairy over the next 5 years until they came out with Lactaid tablets. When Lactaid tablets were first available, they were a pretty low dose. I didn’t mind– when I ate a piece of pizza I knew I could take seven Lactaid tablets and not have diarrhea! About this same time, loperamide (Imodium) was available over-the-counter. It was effective at controlling my diarrhea if I ate too much dairy. (So while I was treating the symptoms, I wasn’t treating the root of the the problem.)

As the years went on, my IBS didn’t go away, I just became better at managing it through diet and stress management. My fascination with digestive health eventually led me to a career as a dietitian.

The next part of the story is a little crazy, so bear with me. During my mid-20’s, I developed plantar fasciitis in my feet which prevented me from doing two of my favorite things: running and playing soccer. I tried every treatment available at the time, including physical therapy, ice, massage, stretching, ibuprofen, special shoes, iontophoresis, orthotics, and rest.

I also worked at the hospital on my feet all day; by this time the plantar fasciitis was affecting my ability to walk at work. I had recently married and my new hubby encouraged me to try natural medicine. At the Northwest College of Natural Medicine, I met with the doctors and explained my story. They prescribed strange treatments like spreading castor oil on my feet and wearing wet socks to bed. They also said they thought I had “too much yeast in my system.” Looooong story short, in addition to foot treatments, the naturopath prescribed some powerful herbal capsules called “candimycin” and a dairy-free diet for 6 weeks. After the 6-week treatment was complete, I was amazed to discover although I still had plantar fasciitis, the treatment had cured my lactose intolerance! (In retrospect, I wonder if I actually had small intestinal bacterial overgrowth– SIBO. The prevalence of SIBO in IBS ranges from 30-85%.)

Flash forward eleven years, to 2009. I learned about the Low FODMAP diet from Patsy Catsos and began using teaching it to my IBS patients. It was revolutionary! I was able to help even more people suffering from IBS, including myself. Balancing FODMAP carbs during the day kept my symptoms in check. Until last year, when I just couldn’t quite get symptom relief from diet alone. After blood testing and an endoscopy, I was diagnosed with celiac disease.

Now I have both IBS and celiac disease. Preparing healthy food for myself and my family is still a huge challenge. But I have hope and confidence that one day, science will unravel the mystery of IBS, and we will have established standards of care and treatment for IBS, SIBO, celiac disease, and other conditions. Maybe then we will be able to identify a person’s gut problems and have a precise treatment regimen created just for them… using a variety of tools, including a specific diet, stress management, genetic testing, herbal and/or prescription antimicrobials, probiotics, and possibly fecal microbiota transplants.

That’s my story, for now. There will be more to tell. I am thankful for:

  • supportive family and friends who let me talk about poop!
  • a network of dietitians who passionately work together to help their patients
  • gastroenterologists, naturopaths, primary care doctors, and functional medicine practitioners, for working as a team to help their patients with IBS
  • the media, who are getting the word out about IBS and SIBO
  • ongoing research by scientists who want answers as badly as the patients
  • my patients– I learn something each time you share your story with me

What’s your story? Whatever it is, #IBelieveinyourStory. You can share your story with me– niki@diarrheadietitian.com

Want to donate to IBS research? Go here.

Or, go here to share your story. We are in this together.

 

 

I’ve been following the gluten-free diet for celiac disease for 7 months now. Ive been fascinated with the question, “What makes a food gluten-free?” As of August 5, 2014, foods labeled “gluten-free” must comply with the following FDA regulations:

  • the food either is inherently gluten free or
  • does not contain an ingredient that is:
    • a gluten-containing grain (e.g., spelt wheat) or
    • derived from a gluten-containing grain that has not been processed to remove gluten (e.g., wheat flour) or
    • derived from a gluten-containing grain that has been processed to remove gluten (e.g., wheat starch), if the use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food.
    • also, any unavoidable presence of gluten in the food must be less than 20 ppm.

Gluten Free Watchdog does a great job of testing food products on the market to ensure they are compliant with FDA regulations. Some foods test at less than 5ppm, while others are over the limit of 20ppm.

I kept thinking about it… what does 20ppm look like in practical terms? I found some great examples:

  • One penny in $10,000
  • One minute in two years
  • One dime in a one-mile-high stack of pennies
  • A slice of bread cut into one million pieces. (You can have 20!)

When you imagine how tiny 20ppm is, it’s easier to see how “cheating” on the gluten-free diet results in intestinal changes and uncomfortable digestive symptoms. And cross contamination is a real issue, both at home and while eating out. Crumbs really do make a difference.

I’m excited to captain a team of super fun 12 runners at the 2016 HooRunnersTrotsBannerFinal copyd to Coast relay this Friday and Saturday. I blogged about HTC when I ran back in 2012. It’s one of my favorite experiences. Look for team #691 Rocking the Runs… and this banner on my minivan! #htc2016

It will be an interesting experience now that I’m gluten free and need to pack all my own food rather than relying on eating at the van exchange points or a local restaurant.

Unfortunately, many people struggle with diarrhea while running, also known as Runner’s Trots, so I have been writing a book on the subject. Now my book needs a good title. Make your suggestions on my Facebook page…  you might win a prize!

 

 

I Am Not My Disease

While completing my dietetic internship twenty years ago (wow!!), I had a rotation through the diabetes treatment center. My preceptor told us, “We do not call people diabetics, they are people with diabetes.” That resonated with me. Over the years as a dietitian, I have been careful not to label people by their medical issues.

Two weeks ago today, I had an endoscopy and colonoscopy. The next day, our family welcomed two new foster kids into our home. Two days after that, I received the pathology report: it was positive for celiac disease. 

Our family is in chaos right now… balancing 5 kids (3 biological, 2 foster) and two busy working parents. In the midst of it all, I’m embarking on a gluten free diet, all the while attempting to prevent kitchen cross-contamination. For now, I’m going to:

  • Take it a day at a time.
  • Get my primary and secondary relatives tested for celiac disease.
  • Replace my favorite gluten-containing foods with gluten-free alternatives. (Tip: I highly recommend GlutenFreeWatchdog.org, an organization that tests foods to ensure they meet the FDA legal definition of “gluten-free” at <20 parts per million.)
  • Educate my family on what a gluten-free diet looks like in real life.
  • Stay positive.GF kitchen goodie bag

A dear friend who has a child with celiac disease recently asked, “How are you going to arrange your kitchen?” I answered, “I’m just trying to survive right now. I haven’t had a chance to clean out my kitchen yet.” Last night, that same friend dropped off a goodie bag filled with new kitchen utensils, cutting boards, a pan, and two favorite gluten-free food items. What a thoughtful gift!

Training for the September Tunnel Light Marathon has begun. One of the reasons for getting tested for celiac disease was the incredible fatigue I felt when training for my last marathon. Today I didn’t feel exhausted during my run. I had more energy, and ran almost 30 seconds per mile faster than last week. Maybe it’s placebo effect, or maybe my body is starting to heal after removing gluten. I’m looking forward to having a healthier body, and maybe even a faster marathon time!

I am not a “celiac”, I am a person with celiac disease.  

Great resources for celiac disease:

  • celiacdiseasecenter.columbia.edu
  • celiaccenter.org The University of Maryland Center for Celiac Research
  • CeliacNow.org Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School. This website is for people who may not have access to specialized nutrition care for Celiac Disease.
  • http://americanceliac.org/celiac-disease/ The American Celiac Disease Alliance (ACDA) is a national non-profit advocacy organization representing the celiac community and those dedicated to improving the lives of those with celiac disease.
  • celiac.org Celiac Disease Foundation (CDF) provides support, information and assistance to people affected by CD & DH.
  • celiaccentral.org National Foundation for Celiac Awareness (NFCA), a non-profit organization dedicated to raising awareness and funding for celiac disease that will advance research, education and screening amongst medical professionals, children and adults.
  • celiac.com Offers key GF and wheat-free online resources that are helpful to anyone with special dietary needs.
  • beyondceliac.org/ Advances widespread understanding of celiac disease as a serious genetic autoimmune condition and works to secure early diagnosis and effective management.

 

May is Celiac Disease Awareness Month. Ironically, I’m getting tested for celiac on May 31st.

Running… Out of Energy

Here’s the back story, it’s a long one. A month or two ago, I blogged about feeling pretty tired and run down.

In December I began training for my 7th marathon in early April. As the months went on, I began feeling more and more fatigued. Running friends commented how they were getting stronger and faster. I wasn’t seeing the same results. In fact, sometimes during long runs, I began wishing I could stop and take a nap. I even ran a half-marathon in February… no PR (personal record), and felt very tired during the race.

Trying the Gluten-Free Diet

About a month before the marathon, I checked out a book from the library called The Gluten-Free Edge: A Nutrition and Training Guide for Peak Athletic Performance and an Active Gluten-Free Life. To be honest, I didn’t love the book, and it wasn’t written by a dietitian. But, I wondered if going gluten-free would restore energy during training.

It wasn’t just about my energy levels, there were other symptoms: diarrhea every day 2-3+ times for the past year and a half, seasonal allergies that seem to come earlier every year, watery eyes, daily joint pain (I blamed it on years of gymnastics), and chronic low Vitamin D despite vigorous supplementation.

I need to point out that I ADORE GLUTEN, any type of bread, pasta, cereal, crackers, or tortillas. I even make my own bread– my pizza dough is legendary! I knew it would be a real challenge to go gluten free. The first week I cut gluten by about half by swapping regular tortillas, cereal, and sandwich bread for gluten-free alternatives. By the second week I was 100% gluten free, albeit a little grouchy. Gluten-free products don’t taste the same!

How did I feel? It’s hard to tell. I felt a little stronger during training runs, and didn’t need to nap every afternoon. I had the first solid bowel movement I’ve had in a long time.

The Epiphany

After a few weeks on the diet, I had an epiphany:

I need to practice what I have been preaching to my patients for years… “Don’t go gluten-free without being tested for celiac disease first.”

Prior to my annual physical, scheduled for the week before my marathon, my primary care doctor drew labs and I asked her to “throw in” a celiac panel.

Side note: six years ago we learned from a Prometheus Celiac Plus lab test that our son was at high risk for celiac cisease. Earlier this year, I had some genetic testing through Nutrigenomix, which indicated I am also at high risk for celiac.

In 2010 my doctor ran a celiac panel which was negative. I think that’s why I was surprised when my labs came back “mildly positive.” UGH. What does that mean? I contacted a colleague of mine who works in a large celiac center in Boston. She consulted with a gastroenterologist specializing in celiac disease and he recommended that I be given both an endoscopy AND colonoscopy.

Why Is It Important to Get Tested Before Going Gluten-Free?

Several years ago I wrote about the difference between celiac disease and non-celiac gluten sensitivity, and the importance of getting tested before going gluten-free. I love this article titled: Six Reasons to Test for Celiac Disease Before Starting a Gluten-Free Diet by the Celiac MD, Amy Burkhart, MD, RD (a doctor and a dietitian, what a great combo!).

In essence, there is a huge difference between a diagnosis of celiac disease and non-celiac gluten sensitivity. Celiac disease is an autoimmune disease that requires 100% life-long adherence to a gluten-free diet with routine medical monitoring. Even gluten crumbs can cause intestinal changes and keep the immune system activated. Those with celiac disease who eat gluten increase their risk of other autoimmune disorders and certain cancers as well.

The “gold standard” for celiac disease is an endoscopy with a biopsy. After you are put to sleep, the gastroenterologist puts a small camera through your mouth into your esophagus, stomach, and into the first portion of your small intestine, where they take tiny samples of the tissue to send for pathology.

Why am I also getting a colonoscopy? It’s actually not connected to celiac disease. I have a family history of early colon cancer on one side of the family, and ulcerative colitis on the other. This test is just to be sure I don’t have either of those problems either.

When following a gluten-free diet for celiac disease, you MUST be fastidious about accidental gluten exposures, particularly through cross-contamination. As I have explained to patients and my own family, it’s the difference between scouring the restaurant for possible sources of cross-contamination, and just asking the waitress for a gluten-free bun for your burger.

Prep for Endoscopy/Colonoscopy

How have I been preparing? First of all, the day after my marathon, I started eating gluten again. This is called a gluten challenge. The idea is to eat gluten every day for the six weeks leading up to the procedure. If you avoid gluten before the endoscopy this can result in a “false negative”. The time and quantity of gluten consumed for a gluten challenge varies from doctor to doctor. There are many protocols: anywhere from two slices of bread for six weeks up to 3-4 slices of bread for 12 weeks.

In the meantime, I’ve been having my “last supper,” eating all forms of gluten, both at home and at my favorite restaurants. I’ve gone through many emotions over the past 5-6 weeks. I’m even grieving the potential loss of foods I never eat. (“What if I can’t eat an oreo again?”… even though I haven’t eaten acolonoscopyprepn oreo in years.)

This week I began seven days of the prep diet: no nuts, seeds, popcorn, whole grains, vitamins, or minerals. Monday, while everyone else is having a barbecue and enjoying the holiday, I will be only consuming clear liquids and I will begin the process of completely clearing my intestinal tract.

I already purchased Miralax, magnesium citrate, and Dulcolax. They are on my bathroom counter, reminding me of next week’s procedure.

What’s Next?caution change ahead-BEST

After my endoscopy and colonoscopy, I will await the pathology results. Regardless of the outcome, there will be a lot of changes to my diet. As my doctor pointed out, my body doesn’t really like gluten. In all likelihood, I will need to go gluten-free, or at least gluten-reduced. The main question is: how careful will I need to be? Stay tuned.

Marathon Results

How was the marathon? I ran my best, but did not get the time I was hoping for. Despite that, I placed 3rd in my age group and missed my Boston Qualifying time by a mere 59 seconds.Niki vernonia marathon 3rd place

 

The month of April is designated as National IBS Awareness Month. Here’s an interview I did this week on IBS for KXL radio in Portland, Oregon.

I liked this great article with 10 News Highlights to Mark IBS Awareness Month. I have had a close connection to irritable bowel syndrome since I was diagnosed with it at age 13. Science has come so far since then! At the time, IBS was a diagnosis of exclusion. Meaning, they ruled out Crohn’s disease and ulcerative colitis (which my aunt had, and tends to run in families). First they gave me a barium enema and analyzed my stool samples. When they couldn’t find anything wrong, they labeled my problem as “Irritable Bowel.”

I am amazed at how far we have come since my diagnosis 30 years ago. Last year, a blood test called IBSChek became available. This test came from studies conducted by Dr. Mark Pimentel and his team at Cedars-Sinai. Their research points to a new concept… that IBS may start after a bout of food poisoning.

A snapshot of what’s new in IBS:

  • An antibiotic called Xifaxan (generic: rifaximin) was also approved last year for use with IBS-D. You may have even seen the commercial for Xifaxan during the Super Bowl! The interesting thing is that Xifaxan is used to treat small intestinal bacterial overgrowth, also known as SIBO. The colon is typically where we find the greatest concentration of bacteria in the digestive system. Sometimes, microbes can migrate backwards up into the small intestine, where they “set up camp.” This overgrowth of bacteria in the small intestine causes symptoms of gas, bloating, diarrhea, and even constipation… the symptoms commonly associated with IBS! In my experience, insurance has been only covering Xifaxan for those diagnosed with IBS-D. If you have IBC-C, Xifaxan may be effective, but you will likely have to pay out of pocket for the medication (around $2000).
  • There’s also another promising new medication in the pipeline for IBS called Viberzi.
  • In a recent study, a Gluten Free diet (patients were educated by dietitians) in IBS patients significantly improved symptoms.

If you have IBS like I do, this is an exciting time. We may soon have not just medications, but treatment options that can possibly cure this disorder.

I apologize this isn’t my best written work, we are heading to LA today for a mini family vacation. : )

I contributed to an article this week on IBS-D and SIBO for Ingredient1.

A year and a half ago I met Taryn Fixel of the Ingredient1 app. She invented the app because when she went to family and friend gatherings, she didn’t know what type of food to bring because everyone was on a different diet. The Ingredient1 mission: Food isn’t one size fits all. Our mission is to remove the chaos from food, so you can just eat.ingredient1

How does Ingredient1 work? According to their website,

PERSONALIZE: Set your diet type, any allergies, industry certifications, manufacturer claims, and ingredient preferences.

SEARCH: Find food and trending products based on your personalized diet and desired flavors.

I love using this app for my patients who have multiple foods they are trying to avoid, either due to allergies (i.e. eggs), intolerances (i.e. fructose), or philosophies (vegan). After you set these preferences and allergens in your personal profile, you are ready to start selecting food. Let’s say you want a ready-to-eat cereal that is gluten-free, dairy-free, and soy-free. You type “cereal” into the search bar and up pops the cereals you CAN eat. That’s the beauty of Ingredient1. It doesn’t tell you what you CAN’T eat, only what you CAN.

By the way, Ingredient1 is a free app. Those who know me best know how much I love free. Happy eating!

It’s funny, this year I will celebrate 20 years of being a registered dietitian. Yet medicine, especially in the area of gut health, is changing so rapidly that I feel almost like I’m starting over. Every week, I pour over new journal articles, blogs, and updates, realizing how much more we all still have to learn!

In the past year:

What’s with all the crazy lab testing? I don’t feel as energetic as I used to. And and I’ve had more diarrhea in the past year than you want to hear about.

Last April I had the opportunity to run the Boston Marathon. It was an amazing bucket-list adventure with my family present to cheer me on. After marathon recovery, I reduced my running, and my energy levels pretty much returned to normal. In December I began training for a local marathon this April. It soon became apparent that my gut is more unhappy than it’s been in years, and my energy levels are not what they used to be. (I’m in denial about it just being the result of getting older!) So I’m digging for nutritional causes using functional and integrative nutrition. I will let you know as soon as I figure out what is the main issue.

The more I read, listen, and study, the more I truly believe that an imbalanced microbiome is the root cause of so many illnesses, conditions, and diseases. The internet is rife with inaccurate information, but also contains some fantastic gems. Here are a couple of my favorite blogs:

uBiome blog

Gut Microbiota for Health newsletter

I have also been working on my second book on Runner’s Trots. (It’s always easier to say you are writing a book than actually writing it. I should be writing right now, but instead I’m doing a blog post!) My goal is to be finished by late August 2016. We have a Hood To Coast running team and I intend to post very large posters of my book cover on our team vans. Team #rockintheruns here we come.

 

 

I receive quite a few requests to provide nutrition counseling to people all across the US. Each state has different requirements; some allow dietitians to practice only in their state, other states allow registered dietitians to practice across state lines. It’s VERY confusing!

Needless to say, the licensure requirements in Oregon do not allow me to practice outside my home state. So, I asked my colleagues if they would like to be part of a network of Digestive Health Dietitians. I added a new tab on my website so you can find a dietitian near you!

The Issue of Perfectionism

When I was in 6th grade, the adviser for the “TAG” program pulled me into her office. After some chit chat about what I would be doing in the summer, she looked me in the eye, and said something I will never forget. “Niki, I think you are a perfectionist. And I’m concerned that this will hurt you later on in life.” After I got over the shock of her comment, I got angry. Who is she to tell me I’m a perfectionist? She didn’t even know me! (She had spent very little time with me up to this point.)

I marched home and told my parents what the counselor had said. They weren’t happy about it either, but I don’t remember anything being done about it.Strive for excellence, not perfection

Flash forward. For my high school graduation, a friend gave me the book “Life’s Little Instruction Book” by H. Jackson Brown, Jr. One of the quotes resonated with me: “Strive for excellence, not perfection.” It became a mission for me.

Through the years, I have continued to fight the urge to be the perfect wife, mom, dietitian, daughter, and friend.

How much less would I have accomplished if I was striving for perfection instead of excellence? Would I have started my business or written a book? Would I have tried to qualify for the Boston Marathon? Would parenting have been too overwhelming if I felt the need to be perfect?

I have learned to give myself a break. Doing my best is enough.

Interestingly, the more pressure I put on myself, the worse my diarrhea flares up. Coincidence? Nope. What about you? Can you fight the urge to be perfect and settle for giving your best effort?