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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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?

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