Misinformation vs Disinformation on the Gluten Free Internet

There’s lots of misinformation and disinformation. Misinformation is false information that is shared, but usually without ill intent. Think about the game of telephone you played as a kid. Someone says something, and by the time it gets to the end, the message is different. 

Disinformation, however, is different. It is the dissemination of intentionally false statements. Sometimes accounts share disinformation to create fear or anger. Sometimes it’s simply for financial profit. as explained in this NPR article. Like THOUSANDS of dollars. Both misinformation and disinformation on the gluten free internet can negatively impact us physically and emotionally, as we strive to stick to our gluten free diet.

Where Do You Get Your Gluten Free Information From? 

When it comes to Celiac Disease, where we get our information from is as important as the info itself. For instance, I wouldn’t go to my podiatrist for heart surgery. Likewise, you need to get your gluten free information from someone who has spent considerable time studying (or living with) Celiac Disease. 

My husband is an 8th grade teacher. He teaches internet safety to his students. One of the guides on this topic that he finds helpful is this Guide on Evaluating Resources from Berkeley University.

Things to Consider When Reading Gluten Free Posts on the Internet

When you encounter any kind of source, consider the following:

Authority – Who is the author? What is their point of view? What are their credentials?
Purpose – Why was the source created? Who is the intended audience?
Publication & format – Where was it published? In what medium?
Relevance – How is it relevant to your research? What is its scope?
Date of publication – When was it written? Has it been updated?
Documentation – Did they cite their sources? Who did they cite?

Primary vs Secondary Sources

Consider the source while searching for information on the gluten free internet. Does someone’s summary of a study actually match the conclusions of the researchers? When someone shares something, can you find a primary resource to back up their statement? Be a conscientious sharer. 

Celiac Medical Professionals and Qualifications

Doctors

As Celiac Disease interactions happen in the intestine, gastroenterologists are the experts in this field. It’s true that some are more knowledgeable than others. However, this is who you should seek out for testing. These types of doctors will often have an M.D after their name (possibly a D.O.), showing their certification. 

However, there are plenty of people on the gluten free internet who may use the term “doctor,” that haven’t gone through medical school. Case in point- “Doctor” Peter Osborne of the “Gluten Free Society”. It isn’t until you get to the very bottom of his personal page, in fine print, that he states he’s not a medical doctor. His license is through the Pastoral Medical Association. As this NPR article on pastoral medical credentials points out, this is basically a credential that requires no medical school or internship.

Dietitian vs Nutritionist vs Health Coach

I fear that the gluten free internet has led to confusion on how these professions are different. Of the three, a Registered Dietitian (R.D.) has the most extensive training and licensure. Dietitians must have a bachelor’s degree from an accredited university, complete an internship, pass a national exam, and complete continuing education credits.

A Nutrition Specialist must also have a degree, possibly in nutrition and/or in Public Health. They usually work to promote public health programs, as their license doesn’t allow them to diagnose and treat medical conditions. Both of these roles are important parts of community health. 

What About Health Coaches?

What requirements are needed to be a health coach? VeryWell shares different Health Coach Certification Programs available. Some require college classes. However, a prominent program only required 6 months of training. No medical degree. No internship. 

While it is possible that some online health coaches have bachelor’s degrees in a health related field, not all do. I recently read Oona Hansons’s article about how seeing a health coach negatively impacted her health and her relationship with food. Those with Celiac Disease are already at a greater risk for eating disorders. Please be careful about who you take dietary advice from. 

Gluten Free Social Media

Influencers and Celiac Disease Advocates

Many people on gluten free social media realm, like myself, are people living with Celiac Disease, with no medical degree. We share our experience, products, and information from Celiac Disease non-profits and other resources. Some of us have been been living with the disease for a long time. Others have been recently diagnosed. One thing to remember- The higher number of followers does not necessarily mean more in depth knowledge or expertise.

What Kind of Person Does Social Media Inspire You to Be?

There are lots of great, caring people in the gluten free community. However, be aware of people who make divisive statements or use fearmongering to grow their social media and website reach. The more emotional a post is, the more likely you are to react and engage. I find Tobias Stockwell’s article How Your Fear and Outrage are Being Sold for Profit, to be very enlightening.

Also evaluate how their posts make you feel and interact with the world. I love the above quote and Instagram post from Carlos Whittaker. In it he asks “Do the accounts you follow cause you to pursue love & understanding of others, or anger and despising of others?” I see SO many social media posts that are basically “clap backs” at people who don’t understand the gluten free diet. But making us angry without giving us ideas for solutions, doesn’t help either.

Financial Disclosures Required by the Federal Trade Commission

Did you know that the Federal Trade Commission has rules on how social media accounts must disclose product and profits they receive? Those that fail to do so could be fined by the FTC. More than that, gluten free social media accounts should always be transparent & honest about free products they receive or sponsored posts they share. Make sure you’re following accounts who are being honest in all they do on social media. 

How to Wisely (and Kindly) Use Facebook and Instagram

Part of using the gluten free internet is knowing how to use various platforms wisely. For example, Facebook groups can be very helpful. One of the benefits is that anyone can post their thoughts, opinions, or product finds there. However, that’s also their downfall.

If you see something in a group that doesn’t seem legit, first alert the group administrator. Then try to see if you can find a primary source to confirm or disprove their statement. If you can provide a reputable link, that’s great. However, this does not mean to start a heated dispute in the comments. What you say reveals your integrity more than theirs.

The Connection Between Social Media, Fear and Mental Health

Last week, I chatted with a friend about her concerns about the gluten free internet. The amount of fear (and fearmongering) she sees in Facebook groups is troubling. She brought up a great point. If we constantly live in fear, what coping mechanisms are we passing on to our children? Especially if the child is the one with Celiac Disease? 

While Celiac Disease is serious, and we do need to be aware of what we’re eating, hypervigilance can dramatically lower our quality of life. Sometimes, participating in online gluten free chats, full of misinformation, can exacerbate that. Facebook and online groups CAN be helpful. Just be wise in what kind of internet “diet” you’re consuming. 

Learning to Be a Critical Thinker, Online

Now more than ever, we need to learn to think critically about what we read on the gluten free internet. This includes both questioning what we see, but also being willing to unlearn mistruths we’ve held on to. For our gluten free community to flourish, we need to learn how to interact with those whom we disagree. If the rest of the world think gluten free is “weak” or “whiny,” we need to prove them wrong by being strong, together. 

I offer a few recommendations for books on critical thinking. Adam Grant’s book “Think Again” offers great insights on being willing to listen and reevaluate ideas. I read great reviews about the book, “Raising Critical Thinkers: A Parent’s Guide to Growing Wise Kids in the Digital Age.” This might be a good read for adults, too, parent or not. (Book links are Amazon Affiliate links. I earn a small commission. It does not impact your cost.) 

Final Thoughts on the Gluten Free Internet

There are many great benefits to the online Celiac Disease community. While I’m technically the advocate, I learn so much from my followers. New restaurants, new products, and sides of living with Celiac Disease I may not have thought of before. Please know this post is not meant for you to kick the internet and social media to the curb. 

I just want us to digest what we read on the internet, wisely. Think about why someone may have written something. Does the tone they use make you feel enlightened and more confident, or despondent? In the end, my goal is to help you feel more informed and capable to live with Celiac Disease. And to live it abundantly. 

Looking for sites with trusted information? Check out my list of Celiac Disease Resources, including support groups that meet face-to-face in Michigan. In addition, I share Facebook groups I belong to, and trust. 

Originally Published in 2022

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What is “Michigan Medicine?”

This title encompasses medical care thru University of Michigan. They offer services thru many locations. This includes the main hospital in downtown Ann Arbor. However it also includes offices and clinics in Ypsilanti, Chelsea, and even Flint. Michigan Medicine provides medical care for just about any health need.

Where is the Michigan Medicine Celiac Disease Program?

This unique collaborative program doesn’t rely on a central location. Instead, the program functions at various locations in the greater Detroit area. These include the Brighton Center for Specialty Care, Northville, and Dexter. Sites also include U of M’s main hospital and Mott Children’s hospital, both located in An Arbor. Doctors in this program also have privileges in other locations. See a complete list of the Celiac Disease Treatment Locations, here.

Why not have the program completely under one roof? When the program started in 2015, the doctors associated with the program felt multiple locations allowed their patients more accessability. For instance, those from Lansing or Flint can drive into Brighton, versus downtown Ann Arbor. Those who live in Ann Arbor or farther south may find the main campus easier to get to.

What Kind of Doctors Work in the Celiac Disease Program?

Because Celiac Disease primarily affects the intestinal tract, most doctors in this program hold a specialty in gastroenterology. However, this program also includes almost a dozen dietitians who specialize in patients with gastrointestinal disorders. In addition, there is are 2 psychologists in their program, to help people cope with the psycho – social side of living with Celiac Disease.

Pediatric Gastroenterologists that Specialize in Celiac Disease

The Michigan Medicine Celiac Disease Program sees patients young and old. Their pediatric gastroenterologist, Dr. Grace Jennifer Lee, sees patients at Mott Children’s Hospital, but also at other locations, such as Brighton. She also has privliges at Sparrow Hospital in Lansing. Dr. Lee also helps children transition to other doctors in the program once they become adults.

Adult Gastroenterologists that Specialize in Celiac Disease

For adults, there are many gastroenterologists who see patients. However, there are two I recommend, who specialize in Celiac Disease. First is Dr Shanti Lynne Eswaran, who gets wonderful reviews from many of my followers. Dr. Ryan Fauble and Dr. Michael Rice also list Celiac Disease as their area of practice. Others have also mentioned Dr. John Del Valle. You can schedule appointments with them at the main campus in Ann Arbor, or at one of their satellite campuses, such as Brighton or Northville. 

Why Should I See a Michigan Medicine Celiac Disease Program Dietitian?

For starters, not all dietitians are knowledgeable about Celiac Disease. Dietitians in this GI Program not only help you after your immediate diagnosis, but can also help trouble shoot other persistent symptoms. Amanda Lynett comes highly recommended. Here’s how she offers guidance to her patients.

We are now 100% virtual so no need to drive to a center. I teach a group class to introduce Gluten Free Living to all new Celiac patients. Then we meet 1-on-1 with patients roughly 2-4 weeks later.. From there we decide how frequent we meet. If they have other non-celiac symptoms we can address things like FODMAP, EPI, etc.

Amanda Lynett

We must remember that Celiac Disease does not prevent us from other health issues, and gluten may not always be the culprit of our malaise. Staying in touch with a dietitian is helpful as our life changes.

What are the Benefits of Seeing A Gastro Psychologist?

Does your Celiac Disease leave you feeling anxious? Do you find difficulty communicating your needs with friends and family? (Don’t we all?) Dr Megan Riehl explains in her post about the GI Behavioral Therapy department who would benefit from this therapy, and what techniques they use.

What About Those with Non Celiac Gluten Sensitivity?

Doctors in the Michigan Medicine Celiac Disease Program also see patients with non celiac gluten sensitivity. When talking to the main scheduling center, all cases involving Celiac Disease and gluten sensitivity are referred to these doctors. Dr William Chey is highly knowledgeable about the FODMAP diet and IBS/IBD.

How Can I Make an Appointment for Any of these Services?

Right now, all appointments with Celic Disease program medical professionals go through the Michigan Medicine central system. That phone number is 888-229-7408. They will find appointment times that will fit your schedule, and location. However, remember that an appointment location closest to you may not always be the earliest appointment. Make sure to specify that you want an appointment with a gastroenterologist that specializes in Celiac Disease. 

Gluten Free Dining in Ann Arbor and Brighton

Looking at traveling to the main hospital in Ann Arbor? Check out my list of Ann Arbor gluten free dining options. Also, University of Michigan dining halls offer fantastic options for students. Visit Tasty Bakery for gluten free baked goods.

If you head to Brighton, you can visit The Village at the Oxford Center for a dedicated gluten free lunch and baked goods. Also make sure to visit No More Belly Aching, just one of many dedicated gluten free bakers in Michigan.

Originally Published May 2020

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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

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Follow Up Medical Tests

Your Celiac Disease care doesn’t stop after your initial diagnosis. While methods for diagnosing Celiac are standard, follow up care is no. Doctors from ESPGHAN published guidelines on follow up testing in the Journal of Pediatric Gastroenterology and Nutrition. Suggestions for proper follow-up care include:

Visit the Celiac Disease Foundation for printable pediatric and adult follow up care checklists.

Meet with a Registered Dietitian

In addition to lab work, it is highly suggested that you meet with a certified registered dietitian. Specifically one who is knowledgeable about Celiac Disease. (In Michigan, I would suggest the many dietitians connected with the Michigan Medicine Celiac Disease Program.) This is especially necessary if you have other health issues such as diabetes, kidney problems, or other health issues that are impacted by diet.

Also, please make sure you see a registered dietitian. Not a nutritionist. Not a health coach. As Houston Family Nutrition points out, there is a big difference between and RD and a “nutritionist.”

Nutrients, Flour and Fortification

Many people, at diagnosis, tend to exhibit vitamin deficiencies. such as zinc, iron and folate. As Celiac Disease affects our ability to absorb vitamins and minerals, it’s important that we eat mindfully to incorporate a diet that meets our body’s needs. While multivitamins are good, your body will process and absorb nutrients better from whole foods than it will from supplements.

Whole grains contain B vitamins regulate many aspects of our health, including our metabolism and sleep cycles. Good examples are whole grain teff, quinoa and even whole grain corn. Eating these are key as many gluten-free packaged items are not fortified with vitamins and minerals like non-gf items counterparts.

A Word on Fiber

Fiber and water are other important factors to our health. Both help in digestion and intestinal health. I personally suggest having a 1/2 cup of beans (pinto, kidney, chickpea. etc) per day. They’re great on salads and in soups. Because most gluten free goods are made from highly refined flour, many with celiac disease do not consume the amount of fiber suggested. We should be consuming 25 to 30 grams of fiber per day.

Probiotics

A word about probiotics. Probiotics help establish healthy levels of the good bacteria in your gut. It’s frequently referred to as the microbiome. Research is still being done on the effectiveness of supplemental probiotics in treating gastrointestinal issues. The body utilizes probiotics from foods better than from pills, as well.

My gastroenterologist suggests drinking kefir daily and/or eating yogurt. These both naturally contain probiotics, as do other fermented foods such as kimchi and sauerkraut. Kombucha, miso and tempeh also contain natural probiotics. How often should you be eating probiotic foods? No one knows that yet.

Recovering from Gluten Ingestion

What do you do if you accidentally ingest gluten? How do you take care of that not-so-fun situation? In most cases, it does not require a trip to the doctor or emergency room. As I explained earlier, Celiac Disease is tied to over 200 symptoms, and we can all experience them with different degrees of severity.

Usually the most pressing issue is the gastrointestinal symptoms, because none of us want to be in the bathroom all day. Taking Miralax or Colace for constipation helps, as well as Gas-X for painful bloating. Sometimes the best thing is simply plenty of rest, lots of fluids and a bland diet until you feel better.

Mental and Emotional Care

Celiac Disease impacts more than just our body. It places a toll on our mental health as well. Beyond Celiac states that those with Celiac Disease are 1.8x more likely to develop depression.  I’ve personally experienced panic attacks, and it’s not fun. These issues should be addressed by a mental health professional. Michigan Medicine’s Celiac Disease Program keeps two psychologists on staff to help patients with these issues.

A big issue with Celiac Disease the is psycho-social component. Dating can be an issue when we have to explain why we can only eat at certain restaurants. What do you do when the person you want to kiss has just eaten a big piece of crusty French bread? Do you ask them to brush their teeth before kissing you? (You actually should. I will admit that I don’t always remember to make my husband do so.)

Finding Local Support

I also recommend joining a local support group, if you can find one. Meeting with other people who have walked the same path you are now in is vital. You can ask questions, learn new recipes, and often learn from speakers who are experts on Celiac Disease and related issues. Visit this list of local and national resources for more info.

The Ohio group organizes a yearly Celiac Disease Conference at Nationwide Children’s hospital. There are lots of ways we can help “pay things forward.”

Conclusion: You Deserve Excellent Follow Up Care

Celiac Disease is a serious condition, with many associated health issues. You deserve to find doctors and medical support staff that listen to your concerns and stay on top of your health. This includes your primary care physician, gastroenterologist, dietitians and more.

We are always our own best advocate. Don’t be afraid to speak up for proper follow up testing, such as tTg antibody testing, Vitamin D levels and thyroid – related labs. And if they won’t listen, keep searching until you find one who does. The Celiac Disease Foundation has a “find a healthcare practioner” portal that may help.

Learn More About Celiac Disease

This post is third in a series for those newly diagnosed with Celiac Disease. My first, Why Celiac Disease Makes Food Your Enemy, explains what Celiac Disease is and isn’t. The second, “Gluten Free Defined,” explains what foods do and do not contain gluten. The fourth installment, Eating outside of the home and other resources, helps you step through your diagnosis and into living the rest of your life with this disease. I hope you find them helpful!

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I’ve heard stories of people who felt like they were close to death because doctors wouldn’t run tests. Or stories of uneducated dietitians who told their patients to eat more wheat,. Furthermore, stories of doctors who told their client that they just needed to take an anti-depressant enrage me. My Facebook followers have shared similar stories. 

There are many ways that medical personnel can increase their Celiac Disease education and awareness. Some webinars require no cost, while others charge. Please consider sharing these links and information with your health professionals. I am listing them in the order of easiest to most involved.

Online Webinars & Classes

Free Training

This  online webinar from NASPGHAN is created by knowledgeable health professionals that I trust. Dr. Alessio Fasano is one of these health professionals, and his book “Gluten Freedom” is a must read for everyone IMO.  If I could afford it, I would give a copy of this book to every doctor in Genesee County.

“This [webinar] is designed for pediatric and adult gastroenterologists, primary care physicians, physician assistants, nurse practitioners, trainees, dietitians, and other health professionals who are involved in the care of patients with gluten related disorders.” This will take just over an hour and they also get continuing education credits.”

Biggest Investment Level –

The University of Chicago Celiac Disease Center offers an extensive online Celiac Disease education online program for medical staff. Previously offered in person in Chicago, their preceptorship program is now completely available online. This center in Chicago is one of my most trusted hospitals doing research in the field today.

The online course costs $250 and can be accessed and completed at any time. As I update this post (5/2022),  the website states they offer this until April 2023.

Specifically for Dietitians

BRAND NEW – The Academy of Nutrition and Dietetics just released a new series titled Treating Gluten Related Disorders, for dietitians. Created with the help of dietitians like Tricia Thompson and Amy Keller, this series helps dietitians treat those with Celiac Disease in all life stages. **Get Reimbursed thru Schar and the Celiac Disease Foundation.

A free webinar on Today’s Dietitian discusses non – responsive Celiac Disease and difference between Celiac Disease, Wheat Allergy, and Non Celiac Wheat Sensitivity. It also explains how to advise patients to implement a gluten free diet after diagnosis.

Dietitians in Gastrointestinal Disorders – This group is a subset of the the Academy of Nutrition and Dietetics. Dietitians who join the DIGID listserv have access to webinars and many more online resources.

Looking for a dietitian knowledgeable about Celiac Disease? Gluten Free Watchdog is willing to help you find one! 

Specifically for Dentists

The Dental Academy of Continuing Education offers an online course to dentists and hygienists. The course, “Oral Complications of Celiac Disease, costs $39, and offers 3 CEU’s. As those with undiagnosed Celiac Disease often have dental defects, dentists sometimes help diagnose Celiac Disease as well. This webinar helps them spot the signs and hopefully refer them to a gastroenterologist. NO LONGER AVAILABLE

The Canadian Dental Association also offers a free webinar titled, Managing Patients with Celiac Disease.

Specifically for Pharmacists

Stat Pearls offers an online course, for $58 for pharmacists. Click this link to participate. This course expires on December 31, 2023.

Training for Mental Health Professionals

As many of us know, there are often neurological manifestations of Celiac Disease. In addition, living with Celiac Disease can impact our mood, due to societal pressures. Children’s National Hospital offers a free Continuing Education training entitled, Celiac Disease Psychosocial Health Program.  

Training for Dermatologists

Some patients with Celiac Disease present with a rash, called Dermatitis Herpetiformis. This is diagnosed via skin biopsy. While Dapsone can help treat the rash, patients must still maintain a gluten free diet. The University of Chicago Celiac Disease Center offers a training specifically on Skin Manifestations for Celiac Disease. Stat Pearls offers a CE course for Nurse Practitioners, as well as an article about DH. 

Other Resources

Beth Israel Deaconess Medical Center offers a website called “Celiac Now.” While it answers many questions for those with Celiac Disease, the material is fantastic for educating doctors as well.

Dr. Schar Institute (yes, the same company that makes those delicious HoneyGrams) is a portal exclusively for medical professionals. Doctors can download informational material for themselves and patients, as well as learn about latest research.

Help Me Help Others

How? I’m asking you to share and ENCOURAGE your doctors and health professionals to review this information. We need our health care providers to know the FACTS about Celiac Disease.  Too many are treating patients based on assumptions or shared opinions. Or even worse, outdated information.

Do you visit a highly celiac disease educated doctor, dietitian or gastroenterologist? Please feel free to sing their praises below! 

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