Who is Shelley Case?

Recently, Shelley Case, the author of “Gluten Free: The Definitive Resource Guide” contacted me about the newest edition of her book. Shelley Case stands among some of the most trusted dietitians in the gluten-free realm. The quoted recommendations in the front of her book include names many of us know – Alice Bast of Beyond Celiac, Melinda Dennis [head dietitian for the National Celiac Association], Amy Jones RD, doctors, and more. Shelley Case lives in Canada. Because of this, her book offers a unique comparison between laws in the United States and Canada.

What Will I Find In This Book?

The amount of information in “Gluten Free: The Definitive Resource Guide” is, in a word, extensive. Even after personally living with Celiac Disease for almost two decades, I learned new things. For instance, I knew about Dermatitis Herpetiformis, but knew little of its prevalence or treatment. Dermatitis Herpetiformis is the skin manifestation of sores caused by eating gluten. I learned the following things by reading this book. 

Gluten Free Recipes and Meal Plans

Aside from medical information, “Gluten Free: The Definitive Resource Guide” also offers practical information. Author Shelley Case includes a complete list of gluten-free grains and their uses. Not sure how to use amaranth, buckwheat, sorghum or teff? This book includes ideas on how to use them all!

In addition, she offers tips on healthy eating on a gluten-free diet. Even better, she includes a rudimentary meal plan for the first week of eating gluten-free! Plus, you will find 36 filling and delicious recipes, including Teff Polenta, Sorghum Peanut Butter Cookies, Hoisin Lentil Wraps, and the Pumpkin Bread pictured below.

Guidance from a Fellow Celiac

So  if you’re looking for a no-nonsense book book that explains the medical side of Celiac Disease, the “Gluten Free: The Definitive Resource Guide” definitely should be on the top of your list. Shelley Case is not just a dietitian, but another fellow Celiac Disease patient who lives the same struggles we do every day. Through this book, she excels at explaining this disease to both the patient and the caregiver.

Other Books About Living with Celiac Disease

Looking for more books to help with your Celiac Disease journey? I recommend Beth Hillson’s Book, “The Complete Guide to Living Well Gluten Free,” as well as Erica Dermer’s book, “Celiac and the Beast.” Need help explaining Celiac Disease to children? Visit my list of Children’s Books. Looking for recipe books? Visit my article on Gluten Free Cookbooks. 

**This page contains affiliate links. A small portion of purchases made through these links goes towards helping to pay for the maintenance of this page. It does not increase the purchase of your item. Thanks for supporting my work!**

Originally Published May 2018

The post Gluten Free: The Definitive Resource Guide appeared first on MI Gluten Free Gal.

I’m a rule follower. I check off lists, I color inside the lines, and balance my checkbook to the penny.
I’m also not a doctor, a nutritionist, or a nurse. Therefore, there are certain doctors whose word is law to me. Therefore, I trust when they require a biopsy for an accurate Celiac Disease diagnosis.

Up until this date, an intestinal biopsy is the “gold standard” in diagnosis. With my family history, my gastroenterologist didn’t even bother with a blood test. Instead, he immediately scheduled me for biopsy to see the extent of the damage. (Which may not have been the best idea, based on this info from the University of Chicago Celiac Disease Center.)  Fast forward almost 20 years. I moved to Flint and chose to find a new gastroenterologist. He’s doing another endoscopy, and I’m okay with that. (Update- My villi returned to normal.)

I once belonged to an online group for those with Celiac Disease. The reasons people in that group chose to eat gluten-free run the gambit. Their methods of “diagnosis” vary as well. Some diagnosed themselves without a doctor. Other received their diagnosis after only by blood test, and some with blood test and biopsy. Others still suffer from Non-Celiac Gluten Sensitivity. (Keep in mind, to date, there is no test for NCGS. However research on zonulin is promising.) Opinions in that group vary widely. Some people are woefully uneducated.

I’ve been a staunch “all must get a biopsy” supporter since I was diagnosed over a decade ago. However, after listening to some stories, I softened my stance a bit. Some don’t have insurance or wrongly told to go on a gluten-free diet first. Others were pregnant at the time, and some simply don’t feel it’s necessary. I simply wish people to gain an accurate diagnosis. In addition, I want people to follow their diet accordingly.

ESPGHAN Biopsy Guidelines

If you’re going to forego a biopsy, you need to make sure that you’re doing so under proper guidelines. The new NASPGHAN Clinical Guide for Pediatric Care guidelines enlightened me. However keep in mind these guidelines are ONLY for children. In a Michigan study, only children with TTG antibody levels greater than 300 fit the criteria for diagnosis, without biopsy. In that study , only ten of 174 patients would have been diagnosed simply by serology alone.  (An abnormal TTG level starts at between 10-15.)  Since that Michigan study, NASPGHAN completed their own research and suggested a TTG level over 100 is sufficient to diagnose without a biopsy. Dr. Fasano, who was once a big supporter of this, has started to question if this is the best way to go. Other intestinal issues may be missed without a biopsy.

A day without biopsy may be coming soon.  However, there are a few things that will never change. DO NOT diagnose yourself. Do not let “Google” become your doctor! I’ve heard stories of people misdiagnosing themselves and instead discovering they have intestinal cancer. DO NOT stop eating gluten prior to diagnosis. While one can get the genetic test to rule it out while eating gluten-free, you MUST be eating gluten for blood and biopsy tests to come back accurately. If your doctor tells you to stop eating gluten before the test, FIND A DIFFERENT DOCTOR. Also make sure they can read read the biopsy and blood test results accurately. Your health is too important to trust to someone who is ignorant.

If you’re not getting a biopsy due to fear, please know that it’s not that bad. I encountered worse pain at the dentist’s office. There is no “prep” with an endoscopy. If you doctor refuses to do it, FIND A DIFFERENT DOCTOR! If your insurance doesn’t cover it, I can only apologize. The ridiculousness of our health insurance system makes me want to punch someone in the throat sometimes.

It all comes down to this. Celiac Disease is a serious disease. Like Erica Dermer from Celiac and the Beast explains, there’s a huge difference between an intolerance and an autoimmune disease. It’s not a fad, it’s not a diet you can cheat on. (Sadly, statistics show those who do not undergo biopsy more often cheat on their gluten-free diet.)  If you can’t undergo a biopsy, live your life as one diagnosed with a serious disease. Don’t pick croutons off a salad. Don’t eat pie filling and leave the crust. If we don’t take our disease (and our need to follow a strict gluten-free diet) seriously, no one else will either.

What’s your story? Did your diagnosis involve a biopsy? If not, what were your TTG levels? How do you feel about the ESPGHAN guidelines?

The post Is a Biopsy Necessary for Celiac Diagnosis? appeared first on MI Gluten Free Gal.

Dr. Alessio Fasano, Author of Gluten Freedom

If you don’t know of Dr. Fasano, he is a pediatric gastroenterologist. Dr. Fasano has been on the forefront of Celiac Disease for decades. He founded the Center for Celiac Research in Boston, MA. Originally from Italy, Dr Fasano came to the United States in the 1990’s. The knowledge of Celiac Disease is where it is today because of his research.

In 2014, Turner Publishing provided me a free advance copy reading of Dr. Alessio Fasano’s book “Gluten Freedom.” It was waiting for me when I returned from the Chicagoland Gluten & Allergen Free Expo. (Now called Nourished Festival.) I started reading it as soon as I was unpacked.

The History of Celiac Disease

Gluten Freedom opened my eyes about the history of Celiac Disease. The first recorded observations about Celiac Disease were known 2,000 years ago. However, Samuel Gee didn’t recognize it as malnutrition disease until the 1880’s.

Even more shocking is that doctors didn’t discover gluten as the trigger until the 1950’s. The treatment for Celiac Disease, a gluten free diet, has been around less than 100 years. It wasn’t even until the 1970’s that a “diagnostic tool” was created and doctors actually began to study it. We’ve come a LONG way!

My Personal Revelation

We know that it is a genetic disorder that we can pass it on to our children. My grandmother had Celiac Disease, and my dad has Celiac Disease. In all honesty, I felt upset for years that my dad didn’t think to have me tested. Didn’t he know that it was genetic, didn’t he know the damage could do to me?

Honestly, based on what I’ve read in this book, I would say no. So dad, please accept my apology. And even if he did know, there’s no guarantee that a doctor would take him seriously in a request to get me tested. When Dr. Fasano came here in the 1990’s, doctors in the US told him Celiac Disease didn’t exist here. Thank God that Dr. Fasano didn’t believe them.

1 in 133 Live with Celiac Disease

Know the study that people always cite, stating that Celiac Disease affects 1 in 133 people? Yeah, that is the result of Dr. Fasano being curious. After sampling blood from donations at the Red Cross, he published his research in 2003. That’s right, 22 YEARS AGO. So this disease has been around almost 2,000 years and doctors here in the U.S. started taking it seriously 22 YEARS AGO. Let that sink in.

So what does 1 in 133 look like in population numbers? 2.5 to 3 MILLION people have Celiac Disease, but at the time of his study in 2003, only 2 PERCENT were diagnosed. Dr. Fasano believes with those numbers, it makes Celiac Disease “humankind’s most prevalent genetically linked disease. It occurs much more frequently than type 1 Diabetes, Cystic Fibrosis, or Chron’s Disease.” (Page 19) Wow!

Other Information in Gluten Freedom

Not only does Dr Fasano discuss Celiac Disease in his book Gluten Freedom, he also elaborates about Non-Celiac Gluten Sensitivity. He actually goes as far to say, based on research, that NO ONE can fully process gluten. HOWEVER, and hear me on this, he does NOT feel that everyone has to stay away from gluten.

Other topics in this book include autoimmune disease, and methods for achieving a proper Celiac Disease diagnosis. Gluten Freedom also discusses what you can and can’t eat on a gluten free diet, including recipes by Jules Shepard. Also, he gives a breakdown on how Celiac Disease affects you in each stage of your life. He finishes the book with current research and the future of Celiac Disease.

Promoting Celiac Disease Awareness

There is so much here to read and digest and disseminate. I suggest getting a copy for yourself. (Your primary doctor too, if you think s/he will read it!)  Even though E-books are popular, I suggest getting this book in hard copy. I have underlined so many parts of this book and written in the margins, it’s ridiculous.

While Dr. Fasano obviously did not work alone, imagine how much more can be done when we ALL work together. So this May, get this book, educate yourself and someone else. Do whatever you can to bring about Celiac Disease Awareness!

**While I was given this book for free, all thoughts and opinions are my own. Looking for other Celiac Disease related books to read? Check you these other books for adults about Celiac Disease.

The post Gluten Freedom Book Review appeared first on MI Gluten Free Gal.