What You Need to Know About Celiac Disease Monitoring

This post about celiac disease monitoring is sponsored by imaware™ and contains affiliate links. This article is not a substitute for medical advice or diagnosis from your doctor or health care provider. Please view my disclosures.

After my doctor diagnosed me with celiac disease more than seven years ago, I hate to admit that I was clueless on what to do next.

“Follow a strict gluten-free diet,” and “Seek out the help of a nutrition professional,” are the only two “prescriptions” my primary care and GI doctor gave me.

This left me alone to face a scary disease and life-changing diet.

I fumbled through everything. I devoured books and blogs about living with celiac disease, and I eventually came up with a formula for healing my body. I’m still learning new things every day, and I still make mistakes all the time. To err is human … and I am as human as they come.

I recently learned that imaware makes scientifically validated at-home celiac disease tests. What an empowering tool for anyone who suspects they might have celiac disease.

YOU can test yourself for celiac disease, at-home, no doctor required. I previously wrote about how to get tested for celiac disease in this article, and detailed a bit about how the imaware at-home celiac disease test works.

Today, however, I want to focus on the “what’s next” part of your celiac disease diagnosis. If your test came back positive for celiac disease, chances are your doctor told you to implement a gluten-free diet (and, if you’re lucky, he or she also told you to seek out a bit of nutrition support). It’s pretty much cut and dry for them, but it’s not so cut and dry for you.

According to a study by Beyond Celiac, 27 percent of nearly 1,500 adults with celiac disease did not see a healthcare provider post celiac disease diagnosis. Why? Most said they “were doing fine on their own,” while others said they did not visit a doctor or dietitian because “they did not need to, their provider was not knowledgeable, or previous visits were not helpful.”

This study highlights how many people with celiac disease feel: Our doctors don’t know what to do with us post diagnosis. Some do nothing; others give poor or unclear advice. Few prescribe a path forward to monitor our condition beyond the initial diagnosis.

In this article, I’ll talk about the “What’s Next” part of a celiac disease diagnosis. After reading this article, you’ll know your path forward, and how you can know, for sure, if your body is responding to the gluten-free diet (and what to do if it isn’t).

Celiac Disease Tests

Chances are your celiac disease test came back with an alphabet soup of letters – all which are confusing to decode. Let’s review.

If you have celiac disease (and you’re consuming gluten), your immune system produces antibodies that attack the transglutaminase (tTG) antibodies. There are two types of tTG antibodies that are used to screen for celiac disease – tTG-IgA and tTG-IgG.

tTG-IgA antibodies are found in the GI tract and are positive in 95 percent of people with celiac disease. However, about 1-3 percent of the U.S. population is IgA deficient and cannot make IgA antibodies. That’s why celiac disease screening also tests for IgG antibodies, which are antibodies found throughout the body, not just in the GI tract.

Take a look at your celiac disease test results. If your tTG-IgA and tTG-IgG levels are elevated, it signals the likely presence of celiac disease.

Additionally, celiac disease testing (and the imaware at-home celiac disease test) may include DGP-IgA and DGP-IgG biomarker testing as well. DGP stands for deamidated gliadin peptide and is used to test for celiac disease in people who test negative for tTG antibodies (perhaps for early detection of celiac disease). It also can be used to monitor how your body is responding to the gluten-free diet (more on that in a bit). Remember, gliadin is a protein found in gluten and is found in the body before tTG antibodies are present.

Regardless of the elevated biomarker, many doctors will want to follow up with an endoscopy procedure to examine and biopsy your small intestine for damage. Your doctor is looking for total villous atrophy, or flattened microvilli, which are the finger-like follicles surrounding your small intestine responsible for absorbing and distributing nutrients from the food you eat. In people with celiac disease, the villi are flat and lifeless.

Monitoring the Effectiveness of the Gluten-Free Diet

To ensure your antibody levels return to normal, you’ll want to monitor your tTG-IgA, tTG-IgG, DGP-IgA and DGP-IgG biomarkers after six months and again after one year on the gluten-free diet according to the Celiac Disease Center at the University of Chicago Medicine.

A celiac patient should have a negative tTg-IgA celiac disease test after two months on the gluten-free diet, and the DGP-IgA and DGP-IgG should be as close to zero as possible, which would indicate minimal antibody response to gluten. (If your body isn’t producing antibodies to gluten, it isn’t finding gluten in the first place.)

imaware makes a Celiac Disease Monitoring test that will check your tTG-IgA, tTG-IgG, DGP-IgA and DGP-IgG biomarkers.

The imaware Home Collection Kit is the same whether you’re testing for celiac disease for the first time, or monitoring month after month. However, if you’re monitoring your levels, the imaware dashboard will chart your progress so you can see how your biomarkers change over time.

Here is what my results report looked like from imaware (please keep in mind that I took this test SEVEN years after my first diagnosis):

As you can see from the above tables, all my biomarkers are “Normal.” In the “Detailed Patient Results Table,” for example, you also can see that my tTG-IgA was less than 1.2 (therefore “negative”) as the cutoff for “normal” is 5.4.

These results give me confidence in the fact that my body is responding well to the gluten-free diet; oh how I wish I had this information along the way. I would have loved to have watched my body respond positively to the hard work I was putting into managing my disease.

However, as I was writing this article, one of my clients (I’ll call her Shari – not her real name) shared with me a letter she received from her doctor. I worked with Shari last year, and at the time she had been gluten-free for four years (upon a celiac disease diagnosis) but she says she didn’t take her diet as seriously as she should have.

Fast forward one year, Shari has cleaned up her diet, a lot, and she told me she was feeling better. She went to her doctor and requested a monitoring test to see how her body was responding to the gluten-free diet.

Good and bad news… while the majority of Shari’s celiac disease tests were “normal,” she still had an elevated deamidated gliadin. Her DGP-IgA level was 57.5 (normal would be less than 14.7). This means there is still gluten in her body as the test is detecting antibodies to gluten.

I told Shari to closely examine if she might be getting accidental gluten exposure from medications, lip balms, cross contamination, etc. She is doing an audit as I write this.

It is very difficult for me to know how to coach Shari going forward beyond helping her figure out where she is still getting exposed to gluten. It also could be that she simply needs more time to heal.

Some people with celiac disease feel better immediately, and their celiac disease biomarkers normalize within months of eating gluten-free. For others, unfortunately, it can take a year or more to normalize. Everybody is different.

I also recommended to Shari that she test herself again in six months to see if her DGP-IgA biomarkers decreases. If it’s decreasing it will at least show progress. In fact, the Celiac Disease Center at the University of Chicago Medicine says everything is okay if the number is declining consistently over time. If your body isn’t responding to the gluten-free diet, and the number isn’t declining, she may need to talk to her doctor about additional testing for refractory celiac disease (see below).

Recommended Celiac Disease Monitoring Schedule

Understanding how (and how fast) your body responds to the gluten-free diet, if at all, isn’t as black and white for everyone. You have options in how you approach monitoring your progress.

Of course, you can go to your doctor and see if he or she will put you on a monitoring schedule. If you have great insurance and a low co-pay — along with extra time on your hands — do this.

However, if you want to take matters into your own hands, and you have limited time for multiple doctor’s visits, go ahead and set up a recurring shipment with imaware. imaware’s Celiac Disease Monitoring Tests can be shipped to you every two, four or six months until you decide you don’t need them anymore. You can then take the results of these tests to your doctor to discuss them in-depth, if needed.

While there is no gold-standard celiac disease monitoring schedule, you should assess the best course of action for you.

If after two or four months your biomarkers are normal, then you can start to monitor your levels annually. But if your biomarkers aren’t budging, or are slowly going down (or worse, going up!), then you may want to monitor every two or four months to stay on top of things.

When your biomarkers aren’t going in the right direction, take a hard look at if you might be unknowingly ingesting gluten. Gluten is found in many hidden foods and medications, and if you eat out a lot, you might be getting glutened by an uneducated restaurant purporting it can do gluten-free right but is actually getting it all wrong, as is the case of the Cheesecake Factory.

Studies have shown that it can take between 15-20 months of a strict gluten-free diet before complete intestinal healing occurs.

Also, be kind to yourself. It’s easy to become fearful of food or throw in the towel – neither are productive behaviors. Some individual’s biomarkers will go down and normalize within a few months while others may take more time — perhaps even years. As long as the biomarkers are going down, you are healing. Your body is different than everyone else’s body – so no comparing – ok? Just stay in your lane and do what you need to do to heal your body.

Strategies for Post Celiac Disease Management

Here are some things to do post-celiac disease diagnosis to encourage your body to heal from celiac disease:

(1) Implement a Strict Gluten-Free Diet

Eating a strict gluten-free diet is the first step, and boy is it an overwhelming step. Please read my Beginner’s Guide to Being Gluten-Free. Tackle everything bit by bit. You can do this. If you need help, contact me.

Remember, even a little gluten can undo all of your hard work. You cannot have even a little gluten – the rule is all or nothing. No cheating. Please read my article, Don’t Cheat On Your Gluten Free Diet for more information on what happens to your body when you eat just a little wheat.

(2) Get Your Vitamin Levels Checked

Chances are you are nutrient deprived, and the nutrient deprivation is worse the longer you’ve gone without a proper diagnosis. Most people with celiac disease are Vitamin D and B12 deficient. Lack of proper nutrition can take its toll on your body, making it harder for you to heal and build immunity.

Talk to your doctor about getting your vitamin levels checked. Take a multivitamin and extra Vitamin B12 and Vitamin D3. Your body will begin properly absorbing these nutrients as it heals.

(3) Begin Celiac Disease Monitoring Process

If you’re going to monitor your biomarkers yourself (empowering, right?), go ahead and set up your recurring order on the imaware website. The company will send you a monitoring test at either two, four or six month increments.

You can also discuss celiac disease monitoring with your doctor. If your doctor doesn’t understand or know what is involved in monitoring, tell him or her everything you learned in this article. Your doctor cares about you, but he or she just may not know what to do.

(4) Consider Doing More

Going gluten-free is a lot of work and stress and the overwhelm can become, well, overwhelming. After years of not feeling myself despite being on a strict gluten-free diet, I realized I need to do more.

I needed to clean up my diet, take some strategic supplements, rest my broken digestive system, and rid my life of stress. Read my article, How I Healed Myself from Celiac Disease to see how I put my celiac disease symptoms into remission.

Celiac disease is a lifelong affliction. Even if you heal, and have completely normal biomarkers (like me), you must always eat gluten-free. The minute you reintroduce gluten into your diet is the minute you’ll undo all the progress you’ve made.

What is Refractory Celiac Disease?

Unfortunately, there is a very small percentage of the diagnosed celiac disease population that do not heal – nor find relief – following the gluten-free dietary recommendations.

Many continue to suffer from malabsorption, abdominal pain, diarrhea or weight loss, and many have persistent small intestine tissue damage despite following a strict gluten-free diet.

The main reason for this is typically due to the individual’s unintentional-but-continued exposure to gluten. Again, gluten can sneak into many sources that you might have otherwise thought to be safe.

A person’s nonresponsiveness to the gluten-free diet also may mean something more may be at play. The Mayo Clinic cites a lactose or fructose intolerance, small bowel bacterial overgrowth (SIBO), exocrine pancreatic insufficiency, microscopic colitis, or irritable bowel syndrome (IBS) as potential causes for refractory celiac disease.

Beyond Celiac says that refractory celiac disease also is marked by “an abnormal population of white blood cells in the gut.” The cells are called “abnormal intraepithelial lymphocytes,” and are immune cells found in the lining of the small intestine. “Their presence is the distinguishing and disturbing characteristic of refractory celiac disease because they can be the beginning of cancer,” says Beyond Celiac.

Patients with higher levels of abnormal lymphocytes are classified as having type II refractory celiac disease. The abnormal lymphocytes can spread outside of the gut, leading to lymphoma (cancer). Again, refractory celiac disease is rare.

Advocate for YOU

Remember, you are your best advocate. Discuss your celiac disease monitoring results with your doctor AND advocate for yourself at all times.

If something doesn’t feel right, say something to your doctor. I believe healing is possible, but you must be in tune with your body and always stay on top of your health.

Continue to monitor how your body is responding to the gluten-free diet over time (especially during the first year) and stay on top of your health – and diet – at all times.