Why You Should Be Tested Before Going Gluten
Many people who suspect they have celiac disease choose to start a gluten-free diet right away, without a formal diagnosis. While putting yourself on a gluten-free diet might seem less expensive or easier than being tested for celiac disease, maintaining a strict gluten-free diet for the rest of your life when its not medically necessary will end up being significantly more expensive and challenging.
Heres why its so important to be tested for celiac disease before going gluten-free:
Diagnostic tests for celiac disease require that you be on a gluten-containing diet so that the test can detect gluten antibodies. If you are already on a gluten-free diet when you decide to be tested, you will need to reintroduce gluten into your diet for several weeks before your blood test, in order to get an accurate result.
1 in 10 family members have celiac disease. This means that if you have celiac disease, your family members have a very high chance of developing the disease. Having a diagnosis helps you know if you can pass on celiac disease to your children, or if other relatives should be tested.
How Do Doctors Test For Celiac Disease
Doctors typically order serologic tests first to look for elevated antibody levels specific to celiac disease.
A panel of tests may be ordered at once, although the tTG-IgA test is the most accurate and reliable screening test for the majority of people.²â·
After a blood test, the next step for an accurate diagnosis is an upper intestinal biopsy and endoscopy.
By viewing a sample of the small intestine under a microscope, doctors can assess the condition of intestinal villi: finger-like projections that help the body absorb nutrients from food. Celiac disease causes the villi to flatten, a clear sign of the illness.²â¸
What Are The Early Signs Of Celiac Disease
While there are over 200 known symptoms associated with the disease,² it is possible to be celiac and have none of them. But for many people, and especially children,³ early signs present as digestive issues.
Some of the most common symptoms include:
- Abdominal pain: Either constant or occasional pain, feelings of fullness, flatulence and/or nausea.â´
- Diarrhea: Considered the most common sign of celiac disease in people,âµ and caused by the bodyâs inability to absorb nutrients.
- Vomiting: Especially in young infants and toddlers, where it can be the main gastrointestinal symptom
- Constipation: In some, a gluten-containing diet slows digestion to two or less bowel movements per weekⶠcreating bloating and stool that is hard to pass.
- Greasy, pale or foul-smelling stool: Also called steatorrhea, this is caused by abnormally high levels of fat in the stool due to malabsorption.â· â¸â
- Unexpected weight loss: With no changes in diet or activity level, especially when accompanied by fatigue or symptoms of vitamin or iron deficiency, such as anemia.â¹
People with celiac disease typically make antibodies that attack tissue transglutaminase, an enzyme that helps repair damage in the body.¹ⰠFor this reason, early signs of celiac disease can also present as:¹¹
- Joint, bone or muscle aches
- Headaches or balance problems
- Liver issues, such as elevated liver enzymes
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Blood And Genetic Tests
To find out if you have celiac disease, you may first get:
Blood test. This test checks for certain antibodies in your blood. Almost everyone with celiac has them in their blood at higher-than-normal levels.
HLA genetic test. This looks for the HLA-DQ2 and HLA-DQ8 genes. If you donât have them, itâs very unlikely that you have celiac disease. You may get a blood test, saliva test, or a swab of the inside of your cheek.
These tests arenât enough to show that you have celiac disease. But if the results show that you might, or it seems very likely you might have celiac disease, your next step is endoscopy.
Can Celiac Eat A Little Gluten
If you have celiac disease and are looking at foods that contain gluten, it’s not like, ‘Oh, I can eat a little bit of this,’ said Safder. The answer is that you can eat none of it because as long as you’re having small amounts of it, your immune system will remain activated and the injuries will continue.
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Blood And Genetic Tests For Celiac Disease
Blood tests search for antibodies produced in response to gluten, more specifically a protein within gluten called gliadin,²⹠which a body with celiac disease sees as a threat.
Testing for both tissue transglutaminase and deamidated gliadin peptides is the best way to capture any false-negatives that may happen in testing for tTG alone.³ⰠTo do so, a small amount of blood is collected and analyzed in a laboratory.
Another, less obvious marker of celiac disease in the blood can be low calcium levels. Even if someone with celiac disease consumes enough dietary calcium, a damaged small intestine canât absorb it properly. Low calcium can lead to loss of bone mass and whatâs known as secondary osteoporosis.³¹
Genetic tests, on the other hand, take a cheek swab to look for the presence of two groups of human leukocyte antigen gene variants. Known as HLA-DQ2.5 and HLA-DQ8, researchers have found 95% of people with celiac disease have HLA-DQ2.5, while most of the other five percent have HLA-DQ8.³²
This partially explains why susceptible individuals tend to have a strong family history. Alternatively, a negative gene result can rule out the disease, which can be helpful for ruling out first-degree family members of people with celiac disease.³³
Testing Can Pick Up Silent Celiac Disease
Silent celiac disease means someone has celiac disease but has no symptoms . But, inside damage is still happening. Screening family members of someone with celiac disease can pick up silent or undiagnosed celiac disease.
It is recommended that all first-degree relatives of anyone diagnosed with celiac disease be screened for celiac disease. This should be done whether or not they are aware of any symptoms. Second-degree relatives with symptoms should also be screened. At times, health care providers are not aware of the need to test family members. If you are diagnosed with celiac disease and family testing is not recommended, take the initiative and ask for your family to be tested.
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What Happens When Celiac Person Eats Gluten
Celiac disease is a digestive disorder triggered by gluten, a protein found in foods that contain wheat, barley or rye. When people who have celiac disease eat gluten, the result is a reaction in their small intestine that can lead to symptoms such as diarrhea, abdominal pain, bloating and weight loss.
Where Do I Start
This was my biggest question and the one that caused me the most angst. Once I got started though, it became easier and almost second nature to cook within the parameters of these new food omissions. So, for starters, lets focus on gluten first. Over the next few months, I plan to post more on food allergies and intolerances, specifically gluten and dairy, so please stay tuned.
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Negative Blood Tests Positive Endoscopy
There certainly have been reports of people who had a positive blood test and endoscopy results even though they’d dropped gluten from their diets several weeks prior to testing. But we don’t know how long those positive test results actually linger once you go gluten-freethose people may not reflect the norm.
One study looked at the blood test EMA-IgA, considered the most specific to celiac disease, and found that 58 percent of diagnosed celiacs actually tested negative on the EMA-IgA after three months of eating gluten-free. Three-quarters were negative on the EMA-IgA blood test after six months and 87 percent were negative after 12 months.
It’s therefore clear that you’re taking a chance on getting false-negative celiac disease test results if you’re not eating gluten at the time of your testing.
Diagnosing Celiac Disease & Gluten Sensitivity In Adults
NYU Langone gastroenterologistsdoctors that specialize in diseases of the digestive systemare experts in diagnosing celiac disease and gluten sensitivity. Celiac disease is an autoimmune disorder in which the immune system mistakenly attacks the digestive tract after a person consumes gluten, a protein found in wheat, rye, barley, and other foods and beverages. Some vitamins, medications, and personal care products such as lip balm contain gluten.
During digestion, food passes through the intestines, where nutrients are absorbed into the body. Most of this absorption occurs in the small intestine, where tiny finger-like projections along the small intestinal lining, called villi, sweep the nutrients from food into the bloodstream.
People with celiac disease, however, have a genetic susceptibility to recognize gluten differently. When someone with celiac disease eats food that contains gluten, it triggers the immune system to attack the small intestine. The body forms antibodies, or proteins, that attempt to remove gluten from the body as if it were a foreign invader. The antibodies also attack the lining of the small intestine, causing inflammation.
Over time, recurrent inflammation damages the villi in the small intestine, and the body doesnt absorb nutrients very well. This can lead to malnutrition and unwanted weight loss. The chronic inflammation also can cause abdominal discomfort.
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Symptoms And Causes Of Celiac Disease
People who have celiac disease commonly experience weight loss, as well as digestive symptoms, including diarrhea, abdominal pain, and bloating.
Some people notice mental and emotional symptoms, such as an inability to concentrate, commonly described as brain fog, or depression.
Not everyone with celiac disease experiences the same symptoms. Some people have no digestive complaints whatsoever, yet routine blood tests reveal low levels of vital nutrients, such as iron, vitamin B12, or vitamin D. NYU Langone doctors take all of these signs and symptoms into account when making a diagnosis.
The exact cause of celiac disease remains largely unknown. However, more than 99 percent of people with celiac disease test positive for two genetic variations known as HLADQ2 and HLADQ8. Not everyone who carries these variations develops celiac disease in fact, most people dont.
Some theories suggest environmental factors trigger celiac disease in people with these genetic variations, but more research is needed. Researchers have found that a family history of the disease increases a persons risk.
What Are The Tests For Coeliac Disease
The first test for coeliac disease is a blood test done by your GP that looks for antibodies that the body makes in response to eating gluten. If the blood test is positive, your GP will then refer you to a hospital specialist for an endoscopy with biopsy.
In some cases, an endoscopy might not be needed to diagnose coeliac disease. Guidelines published in June 2020 in response to the Covid-19 pandemic recommend that some adults can be diagnosed without the need for a biopsy if they:
- are 55 years or younger
- don’t need an endoscopy to rule out another condition
- have symptoms of coeliac disease
- have very high antibody levels
- and have a second positive antibody blood test
If you have any concerns about testing, the best thing to do is to talk with your healthcare team.
You can also take Coeliac UKs online assessment to find out if your symptoms may be caused by coeliac disease.
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What Is A Gluten
A gluten challenge is when you intentionally eat gluten to see if your body produces antibodies, indicating that you have celiac disease. An expert celiac physician can advise you how to undertake a gluten challenge. He or she will recommend the best amount of gluten. Although there is research underway to drastically shorten the duration, currently the challenge would usually be done for six to eight weeks, followed by a biopsy of the small bowel, which is done by endoscopy. However, recent findings suggest that if you are having too many symptoms and cannot tolerate a full six to eight weeks of a daily challenge, it is still worthwhile to have a biopsy after as little as two weeks on one. That would then be combined with celiac antibody testing two to four weeks after the challenge ends.
The gluten challenge now requires eating less gluten over a shorter time frame than in years past. When beginning a gluten challenge:
- You will be asked to begin to eat gluten again. The gluten challenge will last up to eight weeks
- You will need to eat a three to 10 grams of gluten per day, and two grams is roughly equivalent to a slice of bread.
While the gluten challenge may sound risky, it is accepted within the medical community. However, you should be closely monitored by a doctor skilled in celiac disease if taking on the challenge. If you have specific concerns, it is always best to ask your doctor for further guidance.
Your Tests Will Turn Negative Eventually
Once you go gluten-free, your body will stop reacting to gluten and your level of those anti-gluten antibodies will begin to decline. It’s not clear, though, how long it will take for those antibodies to decline so far that testing won’t pick them up. In fact, the testing isn’t 100 percent accurate even in those who are eating gluten.
About 10 percent to 15 percent of people have so-called “false-negative” blood test results even when they’re eating a gluten-filled diet, according to Dr. Alessio Fasano, head of the Massachusetts General Hospital Center for Celiac Research. Since most physicians won’t recommend an endoscopy if blood tests are negative, most people with negative blood test results won’t get further testing for celiac disease, even though a few of them likely have the condition.
So if you stop eating gluten before your blood tests and then test negative, you won’t know if it’s because you don’t have celiac disease, or if it’s because you stopped eating gluten prior to your testing.
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Why Testing Does Not Come First
One of the reasons people dont get tested in the first place is that many frontline physicians seem unaware of the need and may recommend just trying the gluten-free diet, assuming it cant hurt.
The picture can be complicated further when a physician tests a patient for celiac disease when he or she is already following the diet, again unaware of the impact that has on diagnosis.
When she heard a Super Bowl interview with NFL quarterback Drew Brees in which he talked about being gluten free, she wondered if gluten could be her problem, too. She decided to try the gluten-free diet.
Six months later her doctor tested her for celiac disease and the results were negative. Santucci now has no intention of going back for more tests and is happy continuing to eat gluten free because she now feels fine. I dont have to feel self-conscious or rearrange my plans because of a crazy stomach, says Santucci.
While Santucci has no intention of consuming gluten again, celiac disease experts note that without a proper diagnosis patients put themselves at risk because they arent routinely screened for complications. They also dont get proper nutritional support in the case of accidental ingestion, malabsorption issues or nutritional deficiencies.
