Tag Archives: inflammatory bowel disease

Before You Give Up On Your Diet

By NMajik at en.wikipedia (Own work (Original caption: “Source: Self”)) [Public domain], via Wikimedia Commons

By NMajik at en.wikipedia (Own work (Original caption: “Source: Self”)) [Public domain], via Wikimedia Commons

This is the last post in my little Specific Carbohydrate Diet series. The Specific Carbohydrate Diet (SCD) is just a real food diet, with some added food tweaks that good observers throughout history have discovered reverse disease and promote healing. It is not the holy grail of diets, although for some patients, it is the cure they were looking for. (You may prefer the word “control” instead of the word “cure,” since these patients will probably never be able to go back to DiGiorno pizza.) I definitely suggest the SCD for Crohn’s and ulcerative colitis as a starting point diet because there is research behind it. (See here for a short summary of the evolution of the SCD diet with references.)

When I used a form of SCD for my gastrointestinal issues (not inflammatory bowel disease), I ran into a few issues and the diet stalled for me, even regressed. I don’t give up easily when I think there’s a way to accomplish something, and so I played around with the diet and I read what other people trying the diet were saying. I’ve compiled a little list of things to try if SCD is not working for you.

Remember, nothing here on my site is medical advice and should always be investigated and explored. Talk with your doctor and maybe get a referral to a dietitian for help. This is the internet. Believe nothing. Question everything.

Eliminate “pesky” foods that are allowed on the diet: nuts, peanut butter, eggs, dairy. Foods that we know cause life-threatening allergies can also cause other immune reactions in the body that aren’t nearly so serious. Even though they aren’t life threatening like true allergy, they still can cause bad, uncomfortable immune reactions, especially at the interface of the gut lining (but not limited to the gut lining).

Common food allergens like nuts, peanuts, dairy, and eggs are notorious for more than just anaphylaxis and hives! If you read research studies, you’ll see them coming up again and again for things like migraines, eosinophilic esophagitis, and eczema! I feel like medical doctors only communicate the life-threatening aspect of these foods (which is super important, of course), and ignore their involvement in so many other disease states. So people walk around treating their problems with creams, puffers, and pills, when they could be investigating their diet.

The Specific Carbohydrate Diet allows eggs, almonds, nuts, peanut butter, homemade yogurt, cheeses and butter. All good foods! But also all known top allergens that can perpetuate illness in susceptible people.

(Coconut is not necessarily a top 8 common allergen, but I’ve read of many SCD’ers having trouble with it, particularly the flour. I’d add it to the “pesky” list.)

How do you know which “pesky” to take out? Well, you can start with the one you have a sneaky suspicion about. Or you can see if your doctor will order you an IgG blood panel (which has such variable results for people), although you need to know up front that many conventional medical doctors disapprove of them. Or you can eliminate them all, and slowly bring them back in one at a time.

Whatever you do, be smart and make sure you’re getting any nutritional deficits accounted for!

Cut down on baked goods. When people switch to the SCD, they often, understandably, try to recreate the diet they had been eating: muffins, breads, pancakes, and cookies. ALL of these things can be made on the SCD and are super tasty! However, the ingredients for them come from the “pesky” category (almond flour, eggs, butter, and so on), so they really shouldn’t be routine food fare. They also come with a big whop of sugar; yes, I know it’s honey, but fructose in excess has its own negative effects. Baked goods are great as a transition to ease families into eating more real, wholesome foods. If my kids hadn’t had a baked good, I would  have had some runaways.

In any area of the diet you may be lapsing and skimping in, get strict again. Get back to eating only the legal foods with “no exceptions.” It’s so easy to let products back into our kitchens. A little guar gum here. A little BHT there. Some maltodextrin there. Some modified food starch. And then you’ve walked down the slippery slope and fallen. Crash and burn for a few little ingredients that really weren’t even that important to you!

Studies indicate that emulsifiers may cause problems for inflammatory bowel disease, so if you’re struggling, get the “small stuff” back out!

Alternatively, perhaps the idea of “being strict” is sabotaging adhering to the diet well, and adding in a few select real, whole, foods, like rice and/or potato may be helpful in overall adherence to the diet.

Even though certain foods are not allowed on the diet, that doesn’t mean that a person’s body and disease will not tolerate them. Yes, it’s best to adhere to the diet as it is written, but it is VERY likely that adjustments will have to be made. Remember, the diet is not magic. It can’t prophesy exactly what your body will and will not tolerate. If adding in a food that may not be problematic anyhow is the price to pay for keeping on the diet instead of giving up completely, it’s worth a trial! Make sense? (But do talk with your healthcare provider who is overseeing your diet. They might have some other tips they’d like you to try first.)

Elaine Gottschall, the author of the diet, did not intend for The Specific Carbohydrate Diet to be a forever diet. She advocated moving off the diet once symptoms were well-controlled.

Read about FODMAP foods. Foods have natural sugars and molecules that we don’t absorb and that feed our gut bacteria. It’s actually a good thing. But sometimes, guts that are compromised need a break from these too, or else they’ll have painful bloating, gas, diarrhea, and/or constipation.  FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. FODMAP foods can cause pain outside of actual inflammatory disease and would be worth exploring. I have noticed that many people suggest cutting down on fruit if the SCD isn’t working well for you, and I can see where certain fruits will exacerbate a FODMAP condition. Here’s a good site with FODMAP information. Just click on the symbol, and it brings up a nice handout.

Take away the power struggle. When it comes to kids, they MUST understand the diet and their bodies. Kids usually make good decisions when they’re given good information and see the impact of certain foods on their bodies. Make it a point to understand the diet and read the book, then paraphrase it and explain it to your child. Kids need empowered, not controlled. Sometimes our fears lead to a strong need to control, but kids will buck this. Well, at least mine do!

The mind-body idea. We KNOW that there is a BIDIRECTIONAL process between the brain and the gut and conversely, the gut and the brain. It works from the bottom up. And the top down. If you’re ready to take it beyond diet and supplements, maybe it’s time to move inward. Google things like mindfulness and IBD. Or hypnotherapy and IBD. See what you think. This area has definitely piqued my interest. It takes me months and years to write, so you’ll definitely want to read in this area before I get any posts up on it!

Well, that’s it for today. I’m sure there are other tweaks. I think the best tweak is to know you’re going to be okay. Know that nothing can get you, because you’re bigger inside than anything you can comprehend. If you’re on the religious side, know that you’re a spiritual being forever with a human body but fleetingly.

Feel welcome to post any tweaks you’ve found beneficial.

Over.

Terri

 

A Stay-At-Home Mom’s Diet Enters Medical Research

gottschall

 

 

 

When I used to work as a physician, I wondered what it’d be like to stay home with the kids full-time. Some moms would say, “I HAVE to work. My kids drive me crazy.” I always thought to myself that I’d still like to try it and see. Maybe crazy is a state of bliss that I’d like quite a lot.

I did get to stay home, and to my chagrin, I did fall into crazy. Crazy nutrition. At first, I honestly did wonder if I had taken neurotic to its pinnacle, but I kept reading and reading. And over the short four years since I began having any interest in nutrition at all, other than having the best chocolate chip cookie recipe, there have been some major upheavals in medicine regarding nutrition, particularly regarding fat and cholesterol. But I know there will be more.

One upheaval that intrigues me, because I swear real food is pixie dust, is doctors using a real food diet to throw inflammatory bowel disease into remission without medicine. At Seattle Children’s Hospital, researchers are reversing serious cases of ulcerative colitis and Crohn’s disease using the exact same voodoo, or pixie dust (if you prefer), diet that Elaine Gottschall, a stay-at-home mother of two, used in the 1950s to save her 8 year-old daughter’s life from near-terminal ulcerative colitis. The diet, called the Specific Carbohydrate Diet (SCD), was the last hope that Elaine had for possibly saving her child’s colon, maybe even the child’s life itself. Permanent poop collection bag? Death? How about we try this weird diet.

Dr. Sidney Valentine Haas’s Stodgy, Misinformed Diet

The SCD is not a new diet. It has been around in some form since approximately the 1920s, when Sidney Valentine Haas, MD was using it on his celiac and severely afflicted gastrointestinal patients.  At this time, there was no known celiac disease and gluten connection. Dr. Haas, using close observation skills and taking good patient histories (all things falling into disfavor in today’s medical climate), felt that starchy carbohydrates and table sugar were bad for his patients. So he developed a diet which removed starchy foods and sugar, making it inherently gluten-free and grain free. He found that his patients did fine with fruit, and he strongly encouraged bananas, and he even thought there was something special about the banana.

His “banana” diet was pretty popular and was used to manage celiac disease until the gluten connection was verified. Then, Haas and banana diets fell into disfavor, ridicule even. However, Dr. Haas, a reportedly kindly man who lived into his 90s, never acquiesced that gluten elimination should be the sole treatment of celiac disease. He remained adamantly suspicious that most starchy carbohydrates were problematic and needed removed for a time (not a lifetime). He genuinely believed in his diet, and if you read closely, he is scorned for never succumbing completely to the hypotheses that gluten is the sole problem for celiac patients.

(Now, I don’t know whether he was right or wrong about gluten. I DO KNOW that there are celiacs who follow a STRICT gluten-free diet, never eating away from home, and I know they still have abdominal issues. So, perhaps his intuition is not as laughable as it seems. Perhaps, as time passes and we learn more, we will find facts that make him more right than wrong. I don’t know. History repeatedly shows genius in ridicule, and maybe there’s more to treating celiac than just taking away gluten.)

A Doctor -Shopping, Stay-at-Home Mom
elaine_04

This photo of Elaine Gottschall came from http://www.breakingtheviciouscycle.com, the official Breaking the Vicious Cycle and SCD website.

 

The SCD would  have probably stopped right there if it hadn’t been for Big Magic (you really should read the book by this title, very good). Elaine Gottschall (now deceased, 1921-2005) called herself an ordinary, happy, stay-at-home, 1950s’ mom. She had two young daughters. One of her daughters, Judy, began experiencing incapacitating gut issues and was diagnosed with ulcerative colitis at the tender age of four years old. Little Judy was so sick and malnourished by the time she was 8, she had stunted growth and even her neurological system was shutting down. Elaine and Herb were told their daughter had two options: colon removal or death. Elaine wouldn’t hear it and refused to take death or colectomy (colon removal) as an answer for her daughter if she could do anything about it.

So she did what all desperate patients do (or parents of patients), she doctor shopped. After much doctor shopping and no hope in sight except surgery, an acquaintance of a friend pointed her to an outdated, nearly ancient physician. She finally landed in the arms (figuratively) of our now 92-year-old Dr. Sydney Valentine Haas. He started her daughter Judy on his version of what is now the Specific Carbohydrate Diet. Her daughter improved dramatically within days and even more in the months that followed, living a full life, even being able to eat a very diverse diet eventually.

Humiliating Success

Dr. Haas died within two years of meeting the Gottschall family. Would his diet die with him? No. Elaine Gottschall made it her mission to understand that man’s diet, even going back to school and earning degrees in biology, nutritional biochemistry, and cellular biology. If this diet helped Judy live and get her life back, she wanted to know why and share it with the others who were sick. Many times she wanted to give up, but her husband was convicted that the world needed this information that would be lost without Dr. Haas, and he knew Elaine was just the woman to do it.

Herb encouraged Elaine to write a book eventually called Breaking the Vicious Cycle, do health consults, and speak. She functioned at a grassroots level, and she touched thousands of lives, helping people turn their health around with the SCD. But, sadly, she could never break through to medical circles. Her daughter said: “She also wanted the acceptance from–if not approval of–the medical mainstream, which she never got. She was told stories by mothers who said their doctors would refuse to treat their children if they followed her diet…”

Doctors refusing to treat patients if they tried this diet? A diet that has now entered the halls of medical research with initial success? Elaine’s diet brought success to many suffering patients, but the patients’ doctors wouldn’t have it. How could a simple diet help? How could a stay-at-home mom know what she’s talking about? Who was she to challenge medical management?

Because of Elaine’s tenacity and courage (and ability to persist despite medical contempt), people today may have an opportunity to try diet over drugs. Some doctors are listening to patients and trying the SCD in clinical research. (See my last post.)

Elaine, Herb, and Judy (their daughter), thank you.

Closing

The SCD studies are small and sparse, but they’re pretty remarkable, especially in kids, whose healing capacities are always amazing. IF diet makes a difference, then I think Elaine Gottschall is right, the only way it’s going to get to medical doctors is if patients keep showing them. Dr. Suskind’s studies from Seattle are shedding some light, but they’re so small. With just a snap or a new successful medical discovery, his work will be trampled over forever, as Dr. Haas’s almost was.

Did Dr. Haas have it ALL right? No. Did Elaine Gottschall? No. Does the doctor named Natasha Campbell-McBride (who has taken Elaine Gottschall’s work further in her clinical practice, renaming her diet GAPS)? No. Does Dr. Suskind, a researcher using SCD in his studies? No. But continuing to cut out colons and continuing to prescribe immunosuppressants without ever trying significant dietary modification such as the SCD is irresponsible and, to me, unethical. Medical doctors maliciously, scornfully, and condescendingly name-call and ridicule diet theories they don’t agree with like pompous elitists. And guess what! When we do that, nurses, dietitians, pharmacists, and the public follow along. Then, we end up in a big mess. Like Days of Our Lives. Please stop the division.

You are never too small. You are never too insignificant. You are always enough. Your experience is for you. Your experience is for others. Live boldly with love and compassion.

Even your cooking can change someone’s life.

Ciao.

Terri

Sites and links I followed for information, which should always be verified before you even think about trusting anything…

Frontiers in Celiac Disease, pages 5-7: https://books.google.com/books?id=gqaDD3jkcfYC&pg=PA6&lpg=PA6&dq=haas%27s+banana+diet+celiac+disease&source=bl&ots=pPA2rdAt9_&sig=tgEgHivZWbdeSKX5j1Dajx243Iw&hl=en&sa=X&ved=0ahUKEwi1xNTukc_RAhVG4IMKHdtmBKo4ChDoAQglMAI#v=onepage&q=haas’s%20banana%20diet%20celiac%20disease&f=false

http://www.breakingtheviciouscycle.info/p/about-the-author/

Recipes for the Specific Carbohydrate Diet by Raman Prasad

Explaining That Diet Does Help Severe “Stomach” Problems

baadsgaard-alfrida-ludovica-vi-opstilling-med-ananas-druer-ogImagine having diarrhea 15 times a day, every day. Add some blood to that. While you try to walk across a university campus. Or coach basketball.  Or serve on a Navy ship in the middle of the vast ocean. Or learn to add, subtract, and multiply.

This is life with Crohn’s disease or ulcerative colitis, collectively called inflammatory bowel disease (IBD). And when I was a medical student on general surgery, I swear it seems like we were digging around every day in some poor patient’s intestines due to his or her inflammatory bowel disease. Many emerged from surgery with bags to collect their liquid bowel movements.

I feel like I’ve heard it a thousand times. “My doctor says it doesn’t matter what I eat for my Crohn’s disease.” Have you heard that? Do you believe that? That’s 100% false. Research since the 1970s shows that patients can go into remission with special “nutritional shakes.” 

Patients are often convinced that food impacts their disease, but they can’t always pinpoint how or which foods. Medical studies weren’t very helpful in the past; they looked at things like fats, amino acids, and vitamin D, finding some correlations, but nothing to hang their hats on. So hard-working doctors just shrugged their shoulders and said, “It doesn’t really matter, dear patient. Just eat.” [Scram. I’ve got 8 patients waiting to see me. I don’t have time to listen to you speculate about whether or not milk gives you diarrhea.]

But fascinatingly, studies have shown for forty years now, plus or minus, that IBD can be controlled with nutrition! Well, more accurately put, researchers and patients controlled IBD with exclusive enteral nutrition. Exclusive enteral nutrition, EEN for short, is basically just a “nutrition” shake kind of like Ensure or PediaSure, only it tastes much worse. The ingredients in the shake have been pre-digested so they can be absorbed completely in the small intestine.

Studies have repeatedly and reproducibly shown great results for IBD patients and EEN, particularly Crohn’s disease. How great? Well how does upward of 100% sound to you for a remission rate? Would you even settle for a 70% rate? Yeah. That good. I’m cherry picking a little; some studies didn’t have such high success rates, but most did. And some studies that didn’t look all that good to begin with looked better after the study results were adjusted for patients who just couldn’t tolerate the special liquids (often quite a few). Also, results were consistently better for pediatric patients [who often heal more quickly and have to be compliant whether they like it or not—and sometimes choose to be compliant because they feel so much better!]. (Kansal, 2013)

But patients and doctors, I guess, weren’t having that. Too yucky. Too restrictive. (Just for interest, I notice that Nestle seems to make many of these nutritional EENs.)

What’s in that shake?

Great minds pontificated about what it was in the EEN drink which could cause these patients to do so well. They played around with the liquid formulas with good success, trying to make them less repulsive and less expensive. Then they pondered, “Well, can we let our patients eat [cake] and take some of this EEN stuff?”

So researchers let patients drink the liquid EEN formula and have free access to table food at the same time. Yum! With free access to table food, despite the nutritional “shake,” the remission rates weren’t as good as when a patient ate only EEN liquid—but they were better than the patients who received no EEN at all. Aha! So it’s starting to look like something in table food perpetuates increased inflammation in inflammatory bowel disease patients. (Triantafillidis, 2015)

Okay. All Mama’s good table food really threw a wrench in the great effects of the EEN shakes. What next?

Well, allowing table food was a step backward, and researchers thought, “We need another twist. What can we do? This is fun.”

So researchers gave patients nutritional “shakes” and they let them eat only certain allowed foods. (NO CAKE this time. Sorry.) Bingo. Success rates held at about 70% of patients showing improvement and or sustained remission. (I know a lot of doctors who made just 70% in class and are successfully practicing. Pass equals MD, baby. Seventy percent is pretty good.) That’s awesome. How happy would you be to be symptom-free and able to eat some real food?  (Sigall-Boneh, 2014)

It’s 2017. Can we ditch the EEN altogether and just eat real food?

Now, we have to cap it off. Could patients get off of the disgusting “shakes” altogether? (Good-bye, Nestle…) Well, the Journal of Clinical Gastroenterology is about to publish a study done by a Dr. Suskind (and his team, of course!) from Seattle Children’s Hospital. Ten pediatric patients followed a diet called the Specific Carbohydrate Diet for three months, and 80% of them had symptoms improve significantly and even resolve and lab markers normalize. Eighty-stinking-percent! Let me repeat: eighty percent success. WITH FOOD.

Way to go Dr. Suskind and team. Way to take medicine back to truly patient-centered, do-no-harm care! And most importantly: WAY TO GO PATIENTS AND PARENTS WHO PARTICIPATED IN THIS STUDY! Changing how you eat is hard work, and most people balk, standing in the corner cowering with too much fear to leave their pizza and bread behind. Not you. Not you. (Suskind, 2017)

[Click here for a readable summary of Suskind’s report and here for an abstract of it.]

Meh. Study needs to be bigger.

Now, I showed someone Suskind’s research summary, and she replied, “But there’s only ten patients. I wish it was bigger.”

Sigh. So do I. But it’s what we’ve got. And it’s so promising. I’m ebullient. Diet alone! Eighty percent remission! With real food. No diarrhea! No bleeding! No stomach cramps! Virtually 100% safe. No injections! No risk of white blood cell counts crashing. Why won’t people try this?

Reminds me of a verse I learned from a big book, although I’ve adapted it. “The fiddle plays and you won’t dance. The singer wails a mournful tune, and you will not cry.” We are hard to please. Impossible nearly. What do we want? A magic bullet pill with no side effects?

I must close now. But you will not want to miss my next post about the amazing stay-at-home mom who made it her life mission to show the world that inflammatory bowel disease can be controlled most of the times with real, whole food. And I’ll explain a little about the diet that saved her 8-year-old daughter’s life and which she spent her life studying and evangelizing.

Terri

Citations:

Kansal, S., et al. “Enteral nutrition in Crohn’s disease: an underused therapy.” Gastroenterology research and practice 2013 (2013).  https://www.hindawi.com/journals/grp/2013/482108/

Triantafillidis, John K., Costas Vagianos, and Apostolos E. Papalois. “The role of enteral nutrition in patients with inflammatory bowel disease: current aspects.” BioMed research international 2015 (2015). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4352452/

Sigall-Boneh, Rotem, et al. “Partial enteral nutrition with a Crohn’s disease exclusion diet is effective for induction of remission in children and young adults with Crohn’s disease.” Inflammatory bowel diseases 20.8 (2014): 1353-1360. https://www.researchgate.net/publication/263548102_Partial_Enteral_Nutrition_with_a_Crohn’s_Disease_Exclusion_Diet_Is_Effective_for_Induction_of_Remission_in_Children_and_Young_Adults_with_Crohn’s_Disease

Suskind, D. L., Cohen, S. A., Brittnacher, M. J., Wahbeh, G., Lee, D., Shaffer, M. L., … & Giefer, M. (2017). Clinical and Fecal Microbial Changes With Diet Therapy in Active Inflammatory Bowel Disease. Journal of Clinical Gastroenterology. Abstract only: http://journals.lww.com/jcge/Abstract/publishahead/Clinical_and_Fecal_Microbial_Changes_With_Diet.98120.aspx