Follow Up Care- Medical Care Post Celiac Diagnosis

Newly diagnosed with Celiac Disease? What are the next steps in your medical care? I want to cover some of these topics. However, an important disclaimer. I’m not a medical professional. I do however have plenty of contacts who are, and I’ll be sharing knowledge from trustworthy sources.

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 Dietitan

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.”

Houston Family Nutrition Dietitian vs Nutritionist Infographic

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 Chidlren’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!