Interview with Crystal Saltrelli on Living and Eating Well with Gastroparesis


Crystal Saltrelli’s world was turned upside down at age 23 when she was diagnosed with a complicated gastrointestinal disease called Gastroparesis. Gastroparesis is a condition that reduces the ability of the stomach to empty its contents. Few strategies and diet plans are available for patients, who often present with multiple chronic or rare diseases.

After learning the ropes through her own experience as well as returning to school to become a certified health coach, Saltrelli authored two books on both eating and living well with the often confusing disease.

Global Genes was able to sit down with Saltrelli to discuss the condition and her advice for living well and eating well.

THE GLOBAL GENES PROJECT: How prevalent is gastroparesis? Do we know how many people in America have the disease? And do we know who it affects most often (men, women, children, teens, the elderly?)

CRYSTAL SALTRELLI: I should start out, as I always do, by saying I am not a doctor. I am certified Health Coach who has worked with hundreds of people with gastroparesis, as well as having had the disorder myself for nine years. My answers and recommendations are the result of my education and experience, both personal and professional.

The true number of people affected by gastroparesis is unknown. Estimates vary from 500,000 to 5 million. Most people seem to agree that at least 1 million Americans have some form of gastroparesis. While the condition seems to primarily affect women in their childbearing years, there are many children, men, and older women who have gastroparesis, as well.

GGP: What are the most common symptoms of gastroparesis?

CS: Common symptoms of gastroparesis include: fullness after eating small amounts, nausea, vomiting, reflux, regurgitation, stomach pain, bloating, and distention. Not everyone with gastroparesis experiences all of these symptoms, and the symptoms can wax and wane from day to day.

GGP: How does the disease progress over time?

CS: For some people, gastroparesis improves or resolves over time. For some, symptoms remain relatively constant. For others, symptoms may get worse over time. The condition itself is not necessarily progressive. In my experience, both personally and in working with clients, what often seems to be a progression of the condition may actually be a result of the extreme physical and mental stress that this diagnosis can create, combined with malnutrition from following a strict low-fat, low-fiber diet.

GGP: You created a cookbook of recipes for gastroparesis. What are some foods that people with the disease should stay clear of and what are some that would be good to add to their diet?

CS: There’s no one-size-fits-all diet for gastroparesis management, but most people with gastroparesis feel best eating between 10 and 15 grams of fiber per day and between 20 and 50 grams of fat per day, divided evenly between five or six small meals. In general, it’s best to avoid raw vegetables and most raw fruits, especially the skins/peels; whole nuts and seeds (nut/seed butter is usually well tolerated); fatty meats; fried  foods; high-fiber foods, especially products “fortified” with fiber like cereals and breads. While many people with gastroparesis come to rely heavily on low-fat dairy products, that can actually exacerbate symptoms of bloating, distention, gas, and pain. The GP-friendly diet is low in fat, however, any kind of fat is usually well tolerated in small amounts. This includes nut butter, seed butters, olive oil, coconut oil, and butter. Well-cooked fruits and vegetables without skins, seeds, or peels also tend to be well-tolerated and can be an important source of nutrition. Lean proteins like chicken breast, turkey, lean ground beef, white fish, and eggs are good choices for most people with gastroparesis. Some will find that they have trouble with large amounts of protein at one time, however. I’m also a big fan of fresh juices and smoothies as part of a healthy GP-friendly diet. I actually wrote another “cookbook” about that!

GGP: What are some complications that can occur with this conditions that newly  diagnosed patients should be aware of?

CS: I would say the most common complication is under-nutrition or malnutrition due to a severely restricted diet. Not necessarily in terms of amount, as much as nutrient-quality. Many people are simply told to follow a low-fat, low-fiber diet consisting of things like white bread, sugary cereals, non-fat dairy products, and sugary beverages. This diet provides very little nourishment and may actually contribute to blood sugar problems (even in non-diabetics), and vitamin/mineral deficiencies. I truly believe that a high-quality, nutrient-rich diet for gastroparesis can prevent some of these issues.

Additionally, some people with gastroparesis can form bezoars. Bezoars are hardened masses of undigested food. They can block the outlet of the stomach, causing a sudden and/or severe exacerbation of symptoms such as vomiting and fullness. Only about 20% of all GPers will ever get a bezoar. Once you’ve had one, however, you’re more prone to getting another. Bezoars are typically diagnosed via an upper endoscopy.

To prevent this complication, it’s best to avoid the foods specifically associated with bezoar formation: apples, berries, broccoli, Brussel sprouts, coconuts, corn, green beans, figs, oranges, persimmons, potato peels, sauerkraut, and fiber supplements, such as Metamucil, Perdiem, Benefiber, Fibercon and Citrucel. Some medications, like Carafate, can also cause them.

GGP: Besides adapting to a new diet, what sort of lifestyle changes can newly diagnosed patients make to improve their condition?

CS: Supportive lifestyle practices are a huge part of managing gastroparesis. Mild to moderate physical activity, such as walking, helps to encourage gastric emptying. Taking a walk after meals can help to reduce symptoms like fullness and bloating. Adequate, high-quality sleep (7-9 hours per night for most people) is important because digestion and absorption of our food requires a great deal of physical energy. When you’re sleep deprived, the GI tract is already operating at a deficit before we even factor in the gastroparesis.

Stress management is another vital component of a healthy lifestyle, especially when it comes to managing gastroparesis. When we are stressed, our bodies go into fight or flight mode. This shuts down all unnecessary processes in the body, including digestion! Blood flow is diverted away from the digestive organs and enzyme production is drastically decreased. What’s more, the body is unable to heal or repair anything that is not working properly when it’s in this state. The average person is said to have 50 of these stress responses a day. My belief is that most of us with gastroparesis have many more than that — when we worry about what to eat, how we’ll feel after eating, what to do about our symptoms, or when we feel pain or other symptoms. That’s a LOT of disruption to digestion, as well as repair, every single day. Because it’s impossible to eliminate stress, I recommend actively practicing relaxation to put the body back into a state where it can function properly. Anything from deep breathing to prayer to yoga to Tai Chi can be used to do this. It’s just important to do it regularly.

These lifestyle modifications can be very effective, especially in conjunction with dietary changes and medical/complementary treatment.

GGP: Is gastroparesis something that can be caused by your diet, lifestyle or medication use–or is this something that’s inherited or that you’re born with?

CS: There are many different classifications of this condition, so the answer varies. Most people don’t seem to be born with gastroparesis. It’s something develops over time. Of course, there are small children with the condition, so that’s not an absolute.

The most common known cause of gastroparesis is diabetes. In those gastroparesis typically develops over many years as a complication caused by erratic blood sugar.

Other known causes include abdominal surgery, viral infections, acute eating disorders, thyroid disorders, Parkinson’s disease, mitochondrial disease, and autonomic dysfunction.

In many cases, the cause of the gastroparesis is unknown (called idiopathic gastroparesis). My thought is that this may be the result of a “perfect storm” of environmental and physiological factors. (i.e. gut bacteria imbalance, viral infections, extreme stress, a naturally “sluggish” gut, etc)

 

GGP: When were you first diagnosed with gastroparesis? What was the emotional impact on you? 

CS: I was diagnosed with idiopathic gastroparesis in 2004 at the age of 23.  I was really thrown for a loop. I had gone to the doctor for what I was thought drug-resistant acid reflux. He came in, told me that I had gastroparesis, handed me a one-page handout on the diet, and said see you in three months. I immediately started researching the condition on the internet and what I found was really depressing. I became frantic, searching for answers and trying everything I came across in an effort to alleviate the symptoms. Unfortunately I continued to feel worse physically and mentally. This went on for several years, until I finally decided to become the expert I was seeking. I went back to school to study nutrition and holistic health, and that’s when things started to turn around for me.

GGP: How did your family and friends react to your diagnosis–what advice do you have for other patients on dealing with reactions, concerns, or even judgment about their disease from others?

CS: The reaction from family and friends has varied quite a bit over the years.  My immediate family has been incredibly supportive. My extended family and my in-laws, as well as many of my friends seemed to have a hard time understanding the condition and the impact that it had on my life. Part of that is because I never really took the time to educate them and I tended not to be honest about how I was feeling, always just saying “I’m fine.”

My advice to others is that if you want something to understand what gastroparesis is and how it’s affecting you, you have to educate them. Most people don’t have a clue about this condition. I suggest sharing a basic definition and relating it to something they’re familiar with: “it feels like I have the stomach flu every day,” or “it feels like I just ate Thanksgiving dinner… all the time,” or “it’s like having constant morning sickness.” This will resonate more with most people than hearing that you have a digestive disorder. I also think it’s important to model the kind of response you want. If you don’t want people to pity you, don’t use language like “suffering.” If you want help, ask for it and be specific. If you don’t really want to talk about the condition, be honest and say what you really need is a good laugh. We can’t expect others to understand what we’re dealing with or what we need unless we tell them.

GGP: What “mistakes” have you made in your treatment so far? What would you advise other patients NOT to do/try?

CS: I’ve made many, many mistakes over the last 9 years… but when we know better, we do better! I think something that kept me “stuck” for a long time was putting all of my effort into finding the “right” doctor or drug that would cure me, while ignoring the importance and potential impact of self-care techniques like exercise, sleep, and stress management. When I started really prioritizing those things, I started to feel significantly better. (That’s not to say that appropriate medical treatment isn’t important, but in the absence of good self-care it did not provide adequate relief for me.)

Another mistake was stripping my diet down to almost nothing but applesauce and Saltines. For a long time I mistakenly believed that if I continued to whittle my diet down eventually I’d become symptom-free. I only ended up under-weight, exhausted, and deficient in lots of nutrients. I actually think that the poor diet I had the first four years after my diagnosis is still contributing to subsequent health issues today, such as anemia. As a Health Coach, I now know how important nutrition is and I focus on a nutrient-rich GP-friendly diet.

Yet another mistake was spending a lot of time on message boards that, for me, were depressing and scary. The more horror stories I read, the worse I felt myself and the more hopeless and depressed I became. There are now some great support groups out there, both online and in person, but it’s important to make sure you’re in a group that is lifting you up and not dragging you down.

I could probably go on, but those are the major ones that come to mind.

 

GGP: Why did you decide to write your book, what has the response been from the patient community?

CS: I wrote Eating for Gastroparesis because I was receiving the same questions over and over about what it meant to eat “GP-friendly,” so I thought I should put the answers all in one place and make it accessible for those who were being newly diagnosed. At the time, there was very little information available for people with gastroparesis.

About a year later, I wrote Living (Well!) with Gastroparesis because the clients that I was working with one-on-one were getting really good results with what I call a comprehensive gastroparesis management plan, and I wanted to share that with as many people as possible. I also wanted to offer hope, encouragement, and inspiration to those who were struggling like I had been several years ago. I know what it’s like to feel hopeless, helpless, and sick as a dog, and I also know what it’s like to feel empowered, proactive, and pretty darn good most of the time. I want more people to experience the latter!!

The response to both books, as well as my group coaching program, has been extraordinary. I’ve received so many thank you notes and emails, and I feel blessed to have the opportunity to help others navigate this confusing and often overwhelming disorder

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