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Our family recently returned from a six week adventure to Ecuador. I thought it would be simple to eat gluten-free (GF) in Ecuador, but it turned out to be more complicated than I expected!

One of the reasons we chose to go to Ecuador was that we thought it would be easier to eat gluten-free. (We originally considered traveling to Chile, but were told that wheat bread is a main staple of each meal.) I read a few websites here and here and thought I was ready to eat GF in Ecuador.

Packing

Since my son and I both have celiac disease, I packed a separate suitcase with a lot of GF “staples”, including: cereal, flour, pasta, crackers, pretzels, individual peanut butter packetspancake mix, bread crumbs, oatmeal, protein powder, individual soy sauce packets, tortillas and sandwich bread.

We were staying in multiple Airbnb rentals and I wasn’t sure what I would find in each kitchen. So I also packed parchment paper (cookie sheets size as well as rolls) and toaster bags, a large silicone spoon, spatula, and pancake spatula, as well as a wire whisk.

Week 1

We flew from Oregon to California and stayed for a few days before flying to Quito, Ecuador. We arrived to our rented 16th century loft in the Historic District at 1:30am. We were hungry when we woke up the next morning. I was thankful our host left bottled water and that we had packed instant traditional oatmeal packets for my husband and daughter, and GF oatmeal for my son and I. After a quick breakfast we headed straight to the grocery store. On the way we noticed street vendors on every corner… selling bags of fruit, ice cream in cones (sell fast before it melts!), potato chips, candy, and smoothies.

The grocery store was was hardly more than a corner market. It didn’t have much of what we needed, but we purchased some fruit, veggies, produce antibacterial wash, bottled water, chicken, rice, and a few snacks. Aside from the fresh produce and limited selection of meat and chicken, I didn’t see any gluten-free products. We did see some cool new fruits, and tiny quail eggs for sale on the shelf.

When we got back to the loft and put away the groceries, I noticed something missing: an oven. Apparently, ovens are uncommon in Ecuadorian kitchens. (Who knew?!) The kitchen did have cooktop burners and a toaster oven. However, all the numbers were worn off the temperature controls and timer of the toaster oven. With Thanksgiving only two days away, I knew cooking a traditional American holiday dinner was going to be a challenge.

We learned that the fruits and vegetables all need to be washed in a special antibacterial solution. We bought both brands “Vitalin” and “Star Bac” at the store because we weren’t sure if one was better. (They work the same.)

The directions were simple: mix a capful with 1 gallon of water. We had to use our precious bottled water just to wash our produce! 

 

 

 

 

 

 

 

 

 

A childhood friend of my husband lives in Ecuador and told us we needed to shop at the SUPERMAXI, a larger grocery store which has many American foods. Once we stopped laughing about the store’s name, we caught a taxi to the nearest location, right in the middle of a busy “American-type” shopping mall. They were even playing American Christmas music over the speakers. We were excited to see a ton of great gluten free options, labeled “Libre de Gluten” or “SIN GLUTEN” (a fitting name!).

In addition to our regular groceries, we bought GF pizza dough mix, pasta, brownie mix, and Pan de Yuca (yuca bread), which is similar to the Brazi Bites we buy at home from Costco. Interestingly, they had many types of drinkable yogurt available. But the only milk they sell is shelf-stable.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

After eating all our meals in the loft for a few days, we were ready to venture out for lunch, called almuerzo. Armed with my Spanish Gluten Free Restaurant Card, we “spoke” (I use that term loosely, as we spoke little Spanish and he spoke no English) to the manager of a quaint mom and pop diner in the same building as our loft. He read my restaurant card, assured us he would take care of us, and the food would be be gluten free. We sat down and he placed soup in front of us. It didn’t *appear* to have any obvious gluten, so we ate it. Then he brought plates of chicken, rice, and veggies (which we didn’t eat because we weren’t sure if they had been properly sanitized).

That evening, we made an untraditional American Thanksgiving dinner of pan-fried chicken and potatoes, steamed broccoli, raw cucumber, and apple cobbler prepared in the toaster oven. It was delicious!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The day after Thanksgiving it became apparent my son and I had inadvertently consumed gluten. It wasn’t our Thanksgiving feast, it was the restaurant we had eaten at the previous day. Not to go to into too much detail (this review is about food after all), but let’s just say it resulted in repeated trips to the bathroom. We decided to eat at the loft to be safe.

Week 2

The following week, we moved to a different house, closer to the Parque de Carolina, a beautiful park in the center of town, and the SUPERMAXI. The Airbnb host is from the US and also follows a gluten-free diet. When we told her we had gotten “glutened” she knew the likely culprit: Maggi.

She told us that “Maggi” is the brand name of a type of chicken broth many of the small restaurants use in their cooking. Unfortunately, it contains gluten. (Interestingly, when I looked for gluten-free chicken broth at the grocery store later, I found only one that was gluten-free. It was made from quinoa.)

 

 

 

 

 

 

There was a tiny produce-only market only a block from our house. We would stop by every day to purchase fresh, inexpensive fruit. 

Week 3

 

 

 

 

 

 

 

 

 

We visited Mercado Iñaquito near the center of Quito and bought yuca flour from a vendor. Yuca flour is a great substitute for tapioca flour. The vendors had beautiful displays of perfectly-ripened fruits and veggies. They also sold whole-roasted pig and raw chicken, beef, and fish.

Our Airbnb host also recommended a Peruvian restaurant that serves gluten-free food. We did not get a chance to visit, but it’s called Segundo Muelle and there are two locations.

 

Week 4

Our oldest son and my father-in-law arrived from the US. (My son didn’t want to miss as much school, so he came later in the trip.) He brought us another loaf of GF bread and some GF tortillas, since we had run out.

Just about the time we figured out how to eat in Quito, we flew to the Galápagos Island, about 600 miles (1000km) off the coast of Ecuador. Thankfully, they speak more English on the Galápagos Islands since tourism is the major source of income. We flew into Isla Baltra and stayed in Puerto Ayora, on the island of Santa Cruz. We stayed in a small apartment with another tiny kitchen and even fewer food choices at the small market in town. We were able to purchase fresh fish, chicken, produce, eggs, peanut butter ($8 for a small jar), and preserves.

We took a North Seymour tour and saw some amazing creatures, such as land and sea iguanas, pelicans, frigate birds, and the rare blue-footed booby. The tour provided a hot lunch on board the ship. We were about to dig into the delicious feast of fresh tuna when we asked, “Does this have Maggi?” Sure enough, it did. We were able to eat the plain rice and (washed) salad, but luckily had brought peanut butter and jelly sandwiches just in case.

Several evenings, we ate out at local restaurants. We chose restaurants based on what we could read on the menu (if it was in both Spanish and English), if we could see they used mainly fresh ingredients, and if we were able to communicate properly with the server.

We ate at: Lemon & Coffee. The server spoke some English so I could tell her the food had to be gluten free. I had Arroz con mariscos (seafood rice), a traditional coastal Ecuadorian dish. (I found this recipe after we got home. I’m going to modify it and make it for the family now that we are home.)

After three days, we took a ferry over to Puerto Baquerizo Moreno on the island of San Cristobal. We stayed at Hostel Casa de Laura. The rooms were simple and had only a few dishes and a microwave, so we had cold cereal for breakfast, pb&j sandwiches for lunch, and ate out at dinner. The staff at our hotel were able to give us recommendations. We ate a delicious and safe dinner at Bambu.

Week 5

We traveled back from the Galapagos to Quito, and my father-in-law left to return to the states. We spent four more days in Quito in an Airbnb apartment with a kitchen that wasn’t very well furnished. We managed to cook our meals in a combination of the microwave and toaster oven.

We went back to the SUPERMAXI for one more trip before heading to the coast for 8 days on the last leg of our trip. We were out of gluten free oats, so I looked for them in the store. Side note: In the US, oats are highly contaminated with wheat because both grains are grown in the same fields, transported in the same trucks, stored in the same facilities, and processed with the same equipment. Since much of Ecuador is at high elevation, I wasn’t sure if they would have oats and wheat grown in the same location. The bag of oats I found at the store were clearly labeled as containing gluten. 

Traveling to the Coast

We were ready to complete the last leg of our journey. We took a bus to a small  town named Mindo, known for bird watching, zip lines, and chocolate shop. The boys in our family took a tour to learn how cacao is grown and made into chocolate.

We stayed in a quaint hostel called Hostel Henrry’s. We didn’t have access to a kitchen, so that night we ate at The Beehive. The menu was in both Spanish and English and we could tell the ingredients were simple and fresh. My son and I were able to communicate our needs with the staff; the food was delicious and we didn’t have any issues with gluten contamination.

The next morning, our family went ziplining before hiring a driver to take us 5 hours to the coast. We stayed in a condominium community near a tiny fishing town called Tonchigue, about an hour south of Esmeraldas, the largest coastal city in Northern Ecuador. The coastal towns in Ecuador speak a different dialect of Spanish, where they cut off the ends of their words. It made translating from English to Spanish more difficult, and our son had difficulty understanding what they were saying. We decided it was too challenging to eat out at one of the few local restaurants. Instead, we purchased our groceries from a local outdoor market. 

We bought fresh fish, local chicken eggs and all kinds of locally-grown fresh veggies and fruit.

Our apartment had a nice blender, so we made fruit smoothies every evening after dinner. Our favorite new fruits were babaco and guanabana (aka soursop).

We spent Christmas in Tonchigue. I had saved just enough GF flour to make homemade sugar cookies like we do at home. They were so good we ate them before we could get them frosted!

Week 6

After nearly six weeks and two holidays in Ecuador, we were ready to head home. We flew a red-eye back to the US on Delta Airlines. I had ordered GF meals for my son and I on the flight from Quito to Atlanta. At about 3am, the flight attendants came through with our meal service. The “gluten free meal” they served: 4 slices of orange, 4 slices of kiwi, and *GASP* a regular muffin. Luckily, even in my groggy state I knew not to eat the muffin. Luckily I was able to warn my son in time. The standard meal my husband, daughter and other son received? A turkey breakfast sandwich, cheese, fruit, and a small drinkable yogurt. I was frustrated and hungry. Then on our flight from Atlanta to Oregon, they had GF Kind bars, almonds, and GF pretzels for snacks. Delta redeemed themselves!

Advice for Eating Gluten Free in Ecuador

  • Decide before you go if you will be eating mainly in restaurants or if you will be preparing your own meals.
  • If possible, I recommend staying in Airbnbs, condos, or apartments which have at least a small kitchen to prepare simple meals.
  • If you speak Spanish, you may be able to communicate your needs with restaurant servers and chefs. Our sons speak Spanish pretty well, but still found it hard to explain what we COULD and COULDN’T eat.
  • Restaurants are trying to please you. They may tell you what you want to hear rather than make sure the food is SAFE for you to eat.
  • Avoid fried foods. They do not have dedicated fryers. They serve a lot of french fries since potatoes are an Ecuadorian staple. They often cook empanadas in the same fryer.
  • Food that is plentiful in Ecuador: rice, potatoes, fresh fruits and veggies, chicken, fish, seafood and eggs.
  • A lot of food availability depends on if you are in a city or a small town. Small towns do not carry GF foods. The small towns we visited only had large unrefrigerated cuts of beef for purchase.
  • GF Groceries we were unable to find in Ecuador: sandwich bread, crackers, soy sauce, oats, flour mix that doesn’t contain quinoa. You might want to pack these in your suitcase and bring with you, depending on how long you are gone, and how much you are preparing your own food.

All in all, a fantastic trip. I highly recommend you visit Ecuador!

 

Note: this post contains Amazon affiliate links

 

 

 

 

 

It’s been 17 months since a biopsy confirmed my celiac disease (CD) in June 2016. Shortly after, my son was diagnosed in August, then my niece in November. As with any chronic illness, I’ve had some ups and downs.

Intro to IgA-tTG

When people are first diagnosed with celiac disease, they often ask, “When will I feel better?” and “When will my labs come back into normal range?” I had those same questions. I think my CD was diagnosed fairly early… When I went gluten free, my symptoms improved gradually.

IgA-tTG (we can just call it tTG for short) is used as a screening tool. If it’s above normal, an endoscopy with small bowel biopsy (the “gold standard”) is needed to diagnose celiac disease. That’s what happened in my case because my tTG was just above the normal range.

In some cases, tTG alone is used to make a diagnosis. In our son’s case, they did not perform an endoscopy because:

  1. His IgA-tTG was very high.
  2. His genetic testing indicated he had a high risk DQ2 genetic profile.
  3. He was having gastrointestinal symptoms (diarrhea).
  4. A primary relative (me) was also diagnosed with CD.

The gastroenterologist noted that an additional confirmation of diagnosis would be if my son’s symptoms improved on the gluten free (GF) diet. In this interesting study, “Decrease by 50% of plasma IgA tissue transglutaminase antibody concentrations within 2 months after start of gluten-free diet in children with celiac disease used as a confirming diagnostic test.”

In another study in kids, the authors noted that “nearly 1 in 5 children with celiac disease in our population had persistent enteropathy despite maintaining a gluten-free diet and immunoglobulin A tTG was not an accurate marker of mucosal recovery.”

At this point, particularly in children, the IgA-tTG may be helpful at diagnosing CD, but may not be the best marker of gut healing.

Here’s a look at what happened to our labs after CD diagnosis and the first few months on the GF diet.

Results of Testing

Niki’s Labs

Date

6/10

1/12 4/15 3/16 12/16 4/17

8/17

IgA Tissue Transglutaminase (IgA-tTG)

(0-19 units negative

20-30 weak positive

>31 positive)

8

24 19

5

Vitamin D

(30-100ng/mL)

39.9 31.0 36.3 43.4 30.6

*GF diet started 6/1/16

Son’s Labs:

Date

3/10

6/16 11/16

6/17

IgA-tTG

1.2

>100 (the lab didn’t specify a number over 100) 74

16

Vitamin D

28.3

*GF diet started 8/15/16

Niece’s labs:

Date

10/16

5/17 8/17

10/17

IgA-tTG

91

51 34

23

Vitamin D 11.8

25

*GF diet started 12/1/16

You might notice that all of us had low Vitamin D, which is common in new-onset celiac disease due to intestinal malabsorption.

It is also recommended that close relatives are also tested for celiac disease. Here are the results of my family’s IgA-tTG:

  • oldest son and daughter: <1
  • my mom: 4
  • my sister: 5
  • my dad: 19– Since he already had a colonoscopy scheduled, he went ahead and had an endoscopy with biopsies which turned out negative for celiac. (Yay!)

Right After Diagnosis

The day after my endoscopy, we welcomed two foster children into our home. When you add new family members, it’s always a little chaotic. My biopsy results returned two days later, confirming my diagnosis of celiac disease.

It was overwhelming. I was implementing the gluten free diet (only for myself, because our son hadn’t been diagnosed yet) and preparing separate meals for our family and myself. Our foster daughter caught on quickly, and would watch reading every label. She would ask, “Does that have gluten in it? Can you eat that?” I realized quickly that I wouldn’t be able to continue making separate meals for everyone. Our dinners became pretty much gluten free (except for the occasional two pots for regular and GF pasta), which made life much easier.

Three Months 

I had a DEXA bone scan which revealed that I have osteopenia, a condition where my bone mineral density is lower than it should be. Osteopenia and osteoporosis are both common in celiac disease.

I ran my fastest marathon ever, besting my previous time by over five minutes. (Since that was the third time running the same marathon, I could compare times straight across.) I felt stronger in the second half of the race, whereas in previous races I had felt exhausted and weak. I was able to use this time to again qualify for the Boston Marathon, which I will be running in April 2018.

One night I accidentally glutened myself when I ran out of white sauce and substituted a brand in a jar. The next morning I felt nauseous and had diarrhea. I looked at the  label on the white sauce (ooops, I didn’t look the night before) and it contained barley malt. Tough lesson learned: check every ingredient list. Every time. 

Six Months 

When I reached the 6 month mark I started feeling so much better. My energy levels were higher, and I was having less diarrhea. I also gained a few pounds as my body’s absorption of nutrients improved.

Nine Months

At this point, I felt like my energy levels were declining. I got my Vitamin D levels back and they had tanked again. I was frustrated with what felt like a lack of forward progress.

One day in May, I  casually looked at my bottle of vitamins and I couldn’t believe what I saw. In tiny bold letters, it said: Contains soy ingredients. Milk and wheat ingredients are used in fermentation process of enzymes. Product may contain traces of milk and wheat. produced in a facility that processes tree nuts, eggs, shellfish, and fish. My heart sunk. I was on my second bottle of vitamins. I had taken these vitamins daily for about 180 days in a row. I had unwittingly been glutening myself. I have no idea how I missed it both times I bought these vitamins. Tough lesson learned again: check every ingredient list. Every time. 

Twelve Months

After getting off the vitamins, my energy levels returned. It was also summer, so I was able to get plenty of Vitamin D while running outdoors.

Recent Months

I have been more comfortable eating out at restaurants. I use the Find Me Gluten Free app to choose restaurants that offer a gluten free menu and cater to people with celiac disease (when possible).

My intestinal symptoms are improved, but not entirely gone. I still have diarrhea sometimes. I have to remind myself that while I have been treating celiac disease with a gluten free diet, I still have IBS.

Remember learning about the five stages of grief? I’m pretty sure I went through them after my celiac diagnosis. I’m getting closer to the last stage of “acceptance”, but I still get frustrated or angry sometimes when I just want to eat a food that doesn’t have a gluten free substitute (red licorice anyone?!).

Recommendations

I’ve tried a lot of gluten free products. Some taste great, others leave my taste buds disappointed. Here are some of my favorites. Note: I do not have an affiliation with any of these brands, companies, or organizations. I simply promote them because I like them.

My shelf is still filled with several dozen kinds of gluten free flours, but I’ve finally narrowed it down to my favorites:

Here are some of my other GF favorites:

Favorite recipe links:

Two Must-Haves:

Websites I use the most:

 

Disclosure Statement: I received free samples and compensation in exchange for this review.

Case 1

Claire M* is a 43 year old mom of four with an 11 year history of Crohn’s disease. Four years ago, she had surgery to remove her inflamed ileum and create an end ileostomy. Since she suffers from chronic dehydration, she usually sips sports drinks like Gatorade® throughout the day. Claire also has a permanent port which can be used for supplemental intravenous (IV) fluids or nutrition at home. She has been admitted to the hospital countless times with dehydration.

Case 2

Gwyn L* is a 33 year old pediatric critical care nurse with a long history of Crohn’s disease. She had her colon removed and a jejunal-ileal pouch formed over ten years ago. She, too, struggles with ongoing dehydration.

In the past several weeks, Claire and Gwen have been using a new generation of Oral Rehydration Solution. It’s been working very well for both of them. Could it represent a promising advancement to improve the quality of life for those with gastrointestinal failure?

The Cost and Risk of Dehydration

In simple terms, dehydration is an abnormal depletion of body fluids1. It remains one of the most common and preventable reasons for hospital admissions. In 2004, approximately 518,000 hospitalizations in the U.S. were due to dehydration, costing nearly 5.5 billion dollars in hospital charges2. There is no indication costs have reduced since that time.

There are many vulnerable populations for dehydration, including: young children, elderly, pregnant or breastfeeding women, athletes, alcoholics, those living in hot conditions, taking multiple medications, or having underlying co-morbid illnesses such as diabetes, psychiatric diseases, heart, lung, and kidney disease. In addition, individuals with inflammatory bowel disease (IBD), primarily Crohn’s disease or ulcerative colitis, can be at high risk for dehydration due to decreased absorption in the intestine as well as excessive fluid losses from diarrhea3.

What causes dehydration?

Dehydration occurs when our body does not have adequate water to complete normal functions. And, if not treated correctly and quickly, dehydration can be life-threatening.

We normally lose water by sweating, breathing, urinating, defecating, and through tears and saliva. We replace it by drinking and eating. A fever, diarrhea, vomiting, or extreme sweating may lead to excessive losses of fluid, including critical electrolytes sodium and potassium. In addition, underlying diseases such as IBD can cause malabsorption of fluid and electrolytes from the intestinal tract, further contributing to a negative fluid balance.

Symptoms of dehydration include:

  • dry mouth
  • headache
  • dizziness
  • decreased urine output
  • fatigue
  • mental confusion
  • heart irregularities

It is important to note that in dehydration the symptoms are often delayed. Meaning, the body is actually dehydrated before symptoms begin. If it is not treated early, dehydration can also cause nausea, which prevents the person from being able to drink. This cycle can quickly lead to the need for hospitalization and intravenous (IV) fluids.

Preventing Dehydration

Dehydration can be prevented by increased surveillance of patients at risk in the outpatient setting along with early identification and intervention4. After identifying those at risk, treating people with mild to moderate dehydration at home with oral rehydration therapy (ORT) is a key component in reducing hospital admissions due to dehydration.

Oral Rehydration Therapy

Intravenous fluid replacement remains the mainstay treatment for severe dehydration, and has been for almost two hundred years. An important advancement was made in the 1960’s, when scientists discovered oral sodium and potassium absorption could be enhanced when glucose was included5. This discovery facilitated the boom of oral rehydration solutions (ORS) to the market. Gatorade® and Pedialyte® are the most representative icons of this development.

Gatorade® was originally formulated to replace electrolytes lost from sweat during exercise. Many began using it as an ORS because it was inexpensive and readily available. It also tasted better due to a high sugar and significantly lower sodium (salt) content. However, not only are the electrolytes in sport drinks inadequate to treat diarrhea or vomiting, the type of sugar used in these beverages can actually worsen dehydration.

Concurrently, medical grade oral rehydration solutions such as Pedialyte® were developed; they included higher levels of electrolytes with glucose for better absorption. The last decade has seen an influx of similar products and brands such as: DripDrop®, Ceralyte®, Normalyte®, Hydralyte®, Nuun®, and even coconut water, just to name a few. Several websites even provide recipes for homemade ORS.

All of these products use a similar formula of sodium + potassium + glucose + water = rehydration.

Limits of Current Oral Rehydration Solutions

Medical grade ORS are effective for short-term treatment of mild to moderate dehydration, but they have limitations. In individuals with gastrointestinal failures (short bowel syndrome) or malabsorption (IBD and chronic diarrhea) the intestinal capacity for electrolyte absorption is highly impaired. With no electrolytes, there is no water retention and no rehydration.

In addition, traditional oral rehydration solutions continue to rely on the glucose/electrolyte transport mechanism that was discovered many years ago. This imposes several drawbacks:

  1. Poor taste—High sodium content leads to excessive use of flavorings. Yet, the drinking compliance is still compromised, as patients dislike the flavor.
  2. Low sodium bioavailability— More sodium does not solve the equation, as there is a cap to the body’s absorption ability.
  3. Need for high volume consumption— Gastric juices can compromise the integrity, strength, and structure of the electrolytes, requiring large quantities of ORS for small levels of absorption.

Speedlyte®: Bringing New Technology to an Old Problem

Dehydration is not a new problem. Yet, the methods of treatment have not changed much since the 1960’s.

A new company, Einsof Biohealth, has recently introduced a new product to the market called Speedlyte®. What makes it unique is the patented Encapsulated Nano-Electrolyte technology®.

While traditional ORS use glucose to move sodium and potassium across the intestinal wall into circulation, Speedlyte® uses a unique system where the electrolytes are encapsulated inside a liposome. When consumed, these liposomes merge with the intestinal cells so the sodium and potassium can get directly absorbed. Not only does rehydration begin more quickly, recent studies6 have shown that Speedlyte® rehydrates faster than traditional ORS, even with lower total sodium content and less volume of intake. Rehydration can be achieved more rapidly because it is not dependent upon the functioning of the traditional electrolyte absorption pathways, and less glucose and sodium is required. One bottle of Speedlyte may rehydrate faster than three to five bottles of Gatorade®!

Another benefit in encapsulating the electrolytes in liposomes is that the formulation is much less salty, making it more palatable and lessening the need to add so much sugar, sweetener, or flavoring. This is a huge benefit for those who are unable to consume large quantities of ORS, particularly children, older adults, and those with IBD or intestinal failure.

While Speedlyte® is a tool for short-term treatment of dehydration, it is also poised to be an integral component of a long-term hydration maintenance program, particularly for at-risk populations. Maintaining adequate fluid balance at home can potentially prevent hospital admissions and decrease costs.

Ready to Try Speedlyte®?

A few months ago, the creators of Speedlyte®, approached me about participating in their feedback program. They sent me samples to taste and give to my patients. I was surprised at the mild and pleasant orange flavor with a hint of lemon—it was significantly less salty than other ORS I have tried.

When we provided Claire M*, the patient with Crohn’s disease, with a sample of Speedlyte®, this was her response:

“I noticed that Speedlyte works faster than regular Gatorade. I would drink it all at once, and within 30-40 min, I could notice an improvement in my hydration. My body did not seem to “dump” it out my ileostomy as quickly as the Gatorade, which helps with absorption.”

Gwen L* had this to say:

“In the medical field, I wear a few too many hats- Pediatric acute care and Pediatric Intensive Care Unit nurse and leader for the past 9 years, Pediatric Nurse Practitioner (PNP) student, as well as a patient myself with Crohn’s Disease and a history of bowel resections. So, when my dietitian offered me a sample of a new rehydration solution, Speedlyte, I jumped at the opportunity to try it. As a nurse and future PNP, I’m always interested in the palatability of both over-the-counter and prescription supplements and medications. I don’t want families to go out and buy something their children will refuse to drink. As a patient myself, let’s just say I’ve had to drink my fair share of nasty stuff. I gave Speedlyte a try and was pleasantly surprised with not only the taste, but also the small amount needed to help me feel and look rehydrated again. Even better, Speedlyte tastes great at both room temperature and cold.”

Are you ready to give Speedlyte® a try? Go to www.speedlyte.com/feedback.

Niki Strealy, RDN, LD is a registered dietitian nutritionist and the author of The Diarrhea Dietitian: Expert Advice, Practical Solutions, and Strategic Nutrition. She has specialized in digestive health for over 20 years, and has a private practice in Portland, Oregon. 

 

References

  1. “Dehydration.” Merriam-Webster. Merriam-Webster, n.d. Web. Accessed June 1, 2017.
  2. Kim, S. “Preventable Hospitalizations of Dehydration: Implications of Inadequate Primary Health Care in the United States.” Annals of Epidemiology9 (2007): 736.
  3. Barkas, Fotis. “Electrolyte and acid-base disorders in inflammatory bowel disease.” Annals of Gastroenterology26, no. 1 (April 2013): 23-28. doi:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959504/pdf/AnnGastroenterol-26-23.pdf. Accessed June 1, 2017.
  4. “Dehydration admission: percentage of admissions with a principal diagnosis of dehydration per 100,000 population, ages 18 years and older.” Dehydration admission: percentage of admissions with a principal diagnosis of dehydration per 100,000 population, ages 18 years and older. National Quality Measures Clearinghouse. March 2015. Accessed May 31, 2017. https://www.qualitymeasures.ahrq.gov/summaries/summary/49501.
  5. Bhattacharya, S. K. “History of development of oral rehydration therapy.” Indian Journal of Public Health. April-June 1994. Accessed May 31, 2017. https://www.ncbi.nlm.nih.gov/pubmed/7530695.
  6. Faruqui, Rifat. “Perfusion Study on Rat Small Intestine Exposed to Cholera Toxin to Observe Absorption of Water and Electrolytes from a Liposome Based ORS.” Journal of Parasitic Diseases: Diagnosis and Therapy1 (2016). Accessed June 20, 2017. http://www.alliedacademies.org/articles/perfusion-study-on-rat-small-intestine-exposed-to-cholera-toxin-to-observe-absorption-of-water-andelectrolytes-from-a-liposome-bas.pdf
  7. Perry, Ann F., Evan S. Dellon, and Jennifer Lund. “Burden of Gastrointestinal Disease in the United States: 2012 Update.” Gastroenterology5 (2012): 1179-1187.  http://www.gastrojournal.org/article/S0016-5085(12)01157-2/pdf. Accessed June 1, 2017.

 

*All names have been changed

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!