Has a family member  been diagnosed, and they’re urging you to get checked out? The idea of having an autoimmune disease is distressing enough. The thought of taking the steps to found out for sure may seem daunting. It’s not a surprise. There are a lot of competing voices out there.

Take a deep breath. I’ll share a bit of my own journey, facts from trustworthy organizations, and try to help you figure out how to best navigate your concerns on being tested for Celiac Disease.

1. Don’t Change Your Diet Before Antibody Testing

I’ve heard so many heart breaking stories of people who’ve stopped eating gluten prior to being tested for Celiac Disease. Maybe they did it on their own because they wanted to feel better. Maybe a doctor told them to stop prior to testing. DON’T DO IT! All of the accurate testing methods we have to date require the consumption of gluten.

Wheat Allergy vs. Celiac Disease. Vs. Gluten Sensitivity

Maybe you’re thinking, “If I feel better eating gluten-free, what’s the difference?” There’s a lot of difference, according to the University of Chicago Celiac Disease Center. There are three medical issues linked to wheat (wheat allergy, Celiac Disease, and Non-Celiac Gluten Sensitivity) that are distinctly different and require different treatments. Celiac Disease has many associated health issues, such as thyroid disease, osteoporosis, and other intestinal issues. It is important to have an accurate diagnosis to make sure you are getting proper follow-up care. Also, the term “gluten allergy” isn’t accurate.

What If It’s Actually Chron’s Disease?

In addition, Crohn’s Disease and Celiac Disease have many overlapping symptoms, and again require different treatments. (I actually know of a young man who was misdiagnosed for years with Celiac Disease when in fact he had Crohn’s. Not fun.) There are over 300 symptoms that are associated with Celiac Disease, which can make it difficult to diagnose. You owe it to yourself to know for certain!

My Doctor is Worthless / Refuses to Test Me

I know that there are plenty of not-so-great doctors out there. I’ve had my fair share. For those living in Michigan, I highly recommend the doctors at Michigan Medicine Celiac Disease Program. The Celiac Disease Foundation also provides a list on their website of doctors, dietitians and other medical professionals that they trust.

2. Ask Your Doctor to Run Some Blood Tests

A. Celiac Disease Antibody Panel

Doctors have tested for Celiac Disease through the years with a variety of blood work tests. As medical science gets better, so do the tests. As of today, the best test is “tTg-IgA”. This is short for Tissue Transglutaminase Antibodies. It is highly accurate and is positive in 98% of those with Celiac Disease. It is also low in what we call “false positives.” This means that it will accurately come back negative in 95% of those who do NOT have Celiac Disease.

What About False Positives and False Negatives?

“There is a risk of a false positive especially for people with associated autoimmune disorders like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease.“
Because there is some wiggle room, doctors SHOULD run these additional blood antibody tests-

Endomysial Antibodies (EMA), total serum IgA, and Deamidated Gliadin Protein (DGP)

Also please know, that as great as science is, it is still possible for lab tests to come back with a false negative. If you still feel awful, and especially if you have a family history of Celiac Disease, continue to consult with your doctor. Share this guide from the Celiac Disease Foundation if they seem unsure of what tests to run.

Antibody Testing in the Black Community

Recent research has shown that antibody testing in the Black community is not always accurate. A 2022 study showed that “Eighty percent of Black patients with biopsy-confirmed celiac disease in the registry had TTG test results that were less than the upper limit of normal, compared to about 9 percent of non-Hispanic white patients in the registry.” I urge my Black friends to test for an upper endoscopy, even if antibody testing doesn’t suggest Celiac Disease.

B. Genetic Testing

Scientists have now been able to decipher where the sequences of Celiac Disease reside on our genetic makeup. At this point, genetic testing can only be used to rule out Celiac Disease. Doctors state that if you do not test positive for HLA DQ-2 or HLA DQ-8, you cannot have Celiac Disease.

Unfortunately, simply having those genes don’t mean that you DO have Celiac Disease. A large portion of the population (30%) has those genes, but only 1% of the population develop the disease. Because of this, genetic testing CANNOT be used to diagnose Celiac Disease in those who have already stopped consuming gluten. 

3. Meet with a Skilled Gastroenterologist for an Upper Endoscopy

This is me getting ready for a follow-up endoscopy with my new gastroenterologist. A small bowel biopsy, via endoscopy, is the gold standard for being tested for Celiac Disease. I was diagnosed with Celiac Disease in 2001. Fast forward to 2017. My original gastroenterologist followed up only ONCE. He never scheduled follow-up antibody tests to make sure my body was healing. Neither did he check me for osteoporosis, thyroid or other issues. After a move 60 miles away, I decided it was time for a change.

My endoscopy was pretty easy. I didn’t need to drink any junk (that’s for a colonoscopy), and I had to not eat anything for about 10 hours prior to my procedure. Once I was in the procedure room, they were finished in less than 15 minutes. I was under complete anesthesia the whole time. I hear stories by some that weren’t under anesthesia, either because they didn’t want to be or their doctor was foolish.

What Exactly is an Endoscopy?

I’ll explain what an endoscopy is, as that seems it is what makes most people most anxious in being tested for Celiac Disease. During an endoscopy, they stick a small tube with a camera in it to visibly inspect your esophagus, stomach and the duodenum (top part of the intestines.) They also take small bits of tissue, called a biopsy. Tiny, tiny bits of tissue. Small, barely there bits that go under a microscope. These bits are tested and inspected for damaged villi, which are responsible for absorbing our nutrients. This video is great for children who are anxious about underoing an endoscopy.

How Many Samples Should My Doctor Take?

Make sure that your gastroenterologist is taking at least 6 samples from various places in the duodenum. One sample is not enough to make a definitive diagnosis. Celiac Disease can affect one patch of the intestines and not another. More samples are always better. This medical standard in Celiac Disease testing is better explained in the University of Chicago Celiac Disease Center’s explanation of an endoscopsic biopsy.

There may be a day in the future when we will  have less invasive ways to diagnose Celiac Disease. But until then, I will personally still advocate for an biopsy via endoscopy. During the biopsy, doctors might notice items of additional concern. For example, my follow-up endoscopy revealed a hiatal hernia.

4. Meet with an Educated Dietitian and Other Resources

So you’ve been poked, prodded, tested and inspected. You’ve been tested for Celiac Disease and the results are positive. Now what on earth do you do? It’s not as simple as “just take gluten out of your diet.” I mean, that’s what we need to do, but it’s a big learning process. What is gluten? Where does it hide? What other nutritional deficiencies should I be concerned about? Can I ever eat pizza again?

Step 1 After Diagnosis – Find a Knowledgeable Dietitian

This is where a good dietitian who is versed in Celiac Disease is a good place to start. I would again use the CDF provider directory to find one a knowledgeable dietitian. Remember, dietitians have to learn A LOT in school, and some may not be well versed in Celiac Disease. I know Gluten Free Watchdog has offered, in the past, to help people find a good dietitian.

Step 2 – Develop a Support System

I always recommend finding a local Celiac Disease support group. You can find some in my list of local and national resources.  Many groups have a dietitian who advises their group as well. They are also the people who have been navigating and living with this disease everyday They are the ones who have walked in the shoes that you now find yourself in. They know the emotional side of Celiac Disease.

There are lots of good online resources for those of us who are newly diagnosed. The Gluten Intolerance Group, the Celiac Disease Foundation, and Beyond Celiac are all organizations devoted to helping those with Celiac Disease. They all excel at certain aspects of Celiac Disease management. The University of Chicago Celiac Disease Center is an excellent resource as well. Their “FAQ” section is the biggest searchable question database I’ve ever seen. The offer a free E-book to help you “Jump Start” your gluten-free lifestyle.

Be Careful of Who You Follow Online

There are lots of self proclaimed experts online. Make sure that whomever you are following is providing sound medical advice. While I usually don’t “call out” pages I disagree with, I have reservations about Celiac.com and the Gluten Free Society. The first, as explained by Gluten Dude, has lost its credibilty. The second has always been about making money, and promotes unsound medical advice. Just remember, if someone is spouting something too good to be true, it likely is.

Hopefully I’ve given you some information that’s been helpful in regards to being tested for Celiac Disease. I will state clearly that I’m not a doctor, dietitian, nurse or “certified” medical professional. I am a previous Celiac Disease support group chair and a Celiac Disease advocate. I’m a fellow “gluten free gal,” whose been diagnosed with Celiac Disease for over 20 years.

I’m walking this journey with you, every step of the way.

How were you diagnosed with Celiac Disease? What part was most concerning for you? What insights can you share with those who are about to be tested for Celiac Disease? Please share your thoughts below!

Originally published 2018

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Celiac Disease is An Autoimmune Disease, Not a Food Allergy

Celiac Disease is an autoimmune disease. This can be confusing because sometimes you’ll even hear someone with Celiac Disease refer to it as an allergy when we’re eating out. (More on that on another day.)

An autoimmune disease is a “disease in which the body produces antibodies that attacks its own tissues, leading to the deterioration and in some cases the destruction of such tissue.”

Examples of other autoimmune diseases include Type 1 Diabetes, Lupus, Rheumatoid Arthritis, Multiple Sclerosis and more. To make it more interesting, autoimmune diseases are like birds – they like to flock together. When someone has an autoimmune disease, they are likely to develop another one later in life. We’re a blessed bunch, aren’t we?

Celiac Disease is Genetic

Celiac Disease is also a genetic disease. This means that the “code” for this disease is passed on through our genes to our offspring. For example, my grandmother and father both have Celiac Disease.

Interestingly enough, simply having the genes for this disease does not automatically mean that you will develop it. Thirty-five to forty percent of the general population carry the HLA DQ2 or HLA DQ8 genes, but only 1% of them will actually develop Celiac Disease. This is why genetic testing is not sufficient to diagnose the disease. Only to rule it out.

How Does One Get Tested for Celiac Disease?

So how does one get tested for this autoimmune disease? The two B’s – blood work and biopsy. And for these tests to be accurate you have to “B” eating gluten. (See what I did there? I’m so punny.) Doctors traditionally order a Celiac Disease panel that screens for the tTg, EMA, and DGP antibodies. I explain this more in depth on my post on how to get tested for celiac disease, accurately.

If those come back with a high level of antibodies, the next step is a small bowel biopsy done via endoscopy Before you panic, an endoscopy is performed by passing a tube through the throat, so there’s no need to drink the “junk” prior to this procedure. People sometimes comment that it’s highly invasive. Sure, there are some tissue samples, but more cutting and anesthesia is given when someone has their wisdom teeth out. It’s really not that bad. At least in my opinion.

How Does Celiac Disease Affect the Body?

As I mentioned above, the antibodies created by ingesting gluten destroy the body. Specifically, the antibodies destroy the villi that line the intestinal wall. Villi (vill- eye) are small finger-like projections that line the wall of the bowel. They’re little nutritional vacuums, sucking up all the vitamins and minerals from the food we eat.

They absorb the calcium we need for strong bones, the iron we need for red blood cell production, the B6 vitamins we need for metabolism. The list goes on and on. Without those little guys, we’re one big heap of malnutrition. Our body systems can’t function properly without those nutrients, which is why Celiac Disease has so many symptoms and is often misdiagnosed.

What Symptoms Does Celiac Disease Cause?

Due to this malnutrition, Celiac Disease causes some very unpleasant symptoms. Some of these issues can be embarrassing. Before I was diagnosed, I had the most foul smelling gas. I had chronic constipation. Some symptoms can be painful. Joint pain plagued me all throughout college

Some of the symptoms can be dangerous. There are many times that I had racing heart rates, which made me anxious that I was having a heart attack. Beyond Celiac shares a list of celiac disease symptoms, as well as a symptom checklist you can share with your doctor.

It’s Not In Your Head. It’s in your Gut.

Among these symptoms are also neurological and mental health issues. I think this is important to include, as anxiety and depression is on the rise in this country. While these are very real diseases which often require medical intervention, it’s worth mentioning that the food we eat can play a large part in the way we feel emotionally.

There are those with Celiac Disease who may never have physical symptoms from ingesting gluten, but have very serious panic attacks. I personally had one every morning for a year prior to my diagnosis. It’s definitely not fun. I also share this for those who may think that “a little” gluten won’t hurt someone with Celiac Disease. Please don’t mess with our food, because it can literally mess with our minds.

Celiac Disease is Life Changing, Not Life Ending

Celiac Disease changes more than our bodies. It changes our relationship to food, and often to other people. Social engagements often revolve around food, therefore we need to learn to navigate relationships as well. However, this disease does not have to define us or feel like a death sentence. In fact, a gluten free diet helps our bodies to heal so we can live our best life.

However, it often feels overwhelming, especially in the beginning. Let’s take some baby steps, together, in a series of articles I’ve written. First, let’s learn about the gluten free diet, and what’s safe and unsafe to eat. Next, let’s discuss how to take care of ourselves after receiving our diagnosis, both physically and emotionally. Lastly, we’ll discuss venturing outside of the home to eat with others, and resources that can help us learn more about this disease, and keep us healthy.

Welcome to the Celiac Family

Hopefully this primer has been helpful. Please know I have a whole category on my website devoted to living with Celiac Disease. It includes articles about research, food labeling, and so much more. I also have a post about “Celiac Disease Truths I Wish you Knew,” that contain images and memes you can use to educate others.

Last but not least, a few things you I want you to “hear.” One, you did not cause this to happen to you  (or your children.) It happens, so please lay aside any guilt you may have. Also, please know you are not alone. There are many in our community who are eager to help. Email me or reach out to me on social media anytime!

Let’s help spread the knowledge. What’s one thing you’d tell someone who is newly diagnosed? What insight or encouragement would you share? Add it in the comments below! 

Originally Published May 2016

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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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