I’ve been diagnosed with Celiac disease or NCGI. Where the heck do I start?

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First, take a deep breath. Everything will be okay. Do not forget that.

I have a post with tips on how to make your home gluten-free – check it out here.

Talk to family and friends about how you’re feeling. Find the support you need to help get you through these first few weeks.

Below are some great resources for Celiac disease and NCGI:

It’s best practice to continue follow-up appointments with your GI doctor. Typically, the first appointment will be six months after diagnosis and then yearly. Before each appointment, your doctor will order blood work to monitor antibodies, making sure they’re coming down into a normal range.

Meeting with a dietitian after diagnosis and then yearly is also recommended. A dietitian can help create meal plans and give you ideas on products to avoid or to incorporate into your diet.

I don’t feel that bad after eating gluten. Maybe I can eat it on occasion?

This thought might run through your head from time to time. The idea that you can have “cheat days” might sound appealing.

Unfortunately, this isn’t just a diet change, it’s a lifestyle change. Truth is, any time you eat foods with gluten, it causes damage. If Celiac disease is left untreated, or you don’t follow a strict gluten-free diet after being diagnosed, long term health effects can result. This includes…

  • Anemia
  • Osteoporosis
  • Increased risk for certain stomach cancers
  • Miscarriage
  • Infertility
  • Increased risk for other autoimmune diseases
  • Nerve damage

Label Reading

Learning how to read labels will empower you to take charge of your life and well-being. While phone apps are helpful, they’re not always completely accurate. The best way to know what to avoid is to learn exactly which ingredients have gluten hiding in them.

That’s right, I said hiding.

Be careful because wheat isn’t the only ingredient that contains gluten. (Frustrating, right?!) Food manufacturers are required by law to state if their product contains wheat. They are not, however, required to disclose if it has gluten.

Remember: Wheat free does not mean gluten-free

Here’s a list of gluten containing ingredients to look out for:

  • Barley
  • Rye
  • Artificial color
  • Baking powder
  • Caramel color/flavoring
  • Citric acid (can be fermented from wheat, corn, molasses or beets)
  •  Coloring
  •  Dextrins
  •  Diglycerides
  • Emulsifiers
  • Enzymes
  • Fat replacers
  • Food starch
  • Glucose syrup
  • Glycerides
  • Modified food starch
  • Natural juices
  • Natural Flavors
  • Stabilizers
  • Starch
  • Wheat starch

You may see disclaimers such as “Processed in a facility that also processes wheat” or “Made on shared equipment with wheat-containing food” on items that are labeled gluten-free. This is the food company’s way of telling you that there is possible cross-contamination. Many people with Celiac disease react to even the smallest trace of gluten – however – according to the FDA, food that is labeled “Gluten-Free” must contain less than 20 parts per million (ppm) of gluten.

I have a post dedicated to explaining the difference between Gluten-Free and Certified Gluten-Free. You can find it here.

Wow! We just covered a ton of info. Thanks for sticking around. Any questions? Comments? Complete the form below to reach me.