PRE-DIAGNOSIS
Do I Have Celiac Disease or Non-Celiac Gluten Sensitivity (Gluten Intolerance)?
If you are reading this guide, you likely have been experiencing a series of seemingly unrelated symptoms, which may or may not have involved stomach distress, and wondering whether the cause could be celiac disease, non-celiac disease gluten sensitivity (gluten intolerance) or wheat allergy.
The only way to determine the cause of your symptoms is to do a blood test referred to as a “screener.” The test looks for immune cells (lgA), antibodies, and for the presence of a wheat allergy.
Before starting a blood test, a gluten challenge is required. The challenge is necessary to determine your body’s reaction to gluten. A gluten challenge involves eating a minimal amount of gluten for a prescribed period of time before testing.
During the challenge, you cannot stop eating gluten, no matter how difficult that is (If the challenge is really difficult for you, let your physician know. It may be possible to shorten the period of time.)
If the blood test indicates celiac disease, the next step is an endoscopy - the gold standard for testing for the presence of celiac disease. If the endoscopy does not indicate celiac disease, then you have gluten intolerance.
Only in rare cases is a diagnosis of celiac disease made without a biopsy obtained through an endoscopy. In those rare cases a patient must have tTG elevated more than ten times normal and a positive EMA at a second time point.
Given an awareness that gluten may be causing the symptoms you are having, people have been known to consider just stopping eating gluten – without testing or a diagnosis. This is not a good idea for a variety of reasons.
While there are several home tests available, it is best to only think of them as a starter for your primary care physician to take your symptoms seriously rather than as a diagnosis.
NOTE
If you are considering postponing testing, please take a few moments to read: If You Are Considering Postponing Testing.
If the question is about wheat allergy, another way to make a diagnosis is through a skin prick test. The test involves placing a small amount of liquid containing wheat protein on your back or forearm, which is then pierced with a small sterile probe to allow the liquid to seep into the skin.
If you have a skin rash known as Dermatitis Herpetiformis and your blood tests are positive, you may not need an endoscopy. If you have Dermatitis Herpetiformis, you have a diagnosis of celiac disease.
To learn more about testing, including home tests, look at Testing For Celiac Disease.
For a checklist of actions your physician should take at the time of diagnosis and a check list for follow-up visits, see Celiac Disease Foundation’s Adult Celiac Disease Follow-Up Checklist.
TIPS
Use the time between the positive blood test and endoscopy to:
Eat your favorite gluten-filled foods
Eat in your favorite restaurants that will be off-limits if you adopt a gluten-free lifestyle
Get a head start about learning about living gluten-free in case the biopsy is positive. For instance, read Just Diagnosed and what is advisable to do in your kitchen if you have to eat gluten-free.
Keep a journal of your symptoms to take to all appointments with members of your medical team, including a registered dietitian. If you get symptoms close to a time when you are aware that you ingested gluten, include the date, a description of the symptom, and the severity. Also include the date and possible causes.
If the tests come up negative even though your symptoms indicate that you have celiac disease, be proactive and push your doctor to order an endoscopy. As noted above, keep in mind that you have to continue to eat gluten for the endoscopy test to be meaningful. The alternative to taking an endoscopy is just staying off gluten. If you are considering postponing testing, please take a few moments to read: If You Are Considering Postponing Testing.
If a doctor tells you to just stop eating gluten and see if you feel better or tells you to go to a dietitian – get another doctor. (To learn how to change doctors, click here.)
Don’t go it alone. If you don’t have a person in your inner circle with whom you can let it all hang out, look for someone who has been in your situation, for example, through Charlie’s Table Oasis or through one of the national celiac organizations or join a local or virtual support group.
To learn more, see our following articles:
Does My Child Have Celiac Disease?
A list of common symptoms that prompt the question of whether a child has celiac disease includes the following:
Diarrhea
Distended belly
Failure to thrive
Irritability
Muscle wasting
Short stature
Sleep disturbance
For a list of other symptoms associated with celiac disease, click here.
A test is the only way to determine whether your child has celiac disease or a health condition known as wheat allergy. If symptoms continue, and your child does not have either health condition, the assumption is that your child has non-celiac gluten sensitivity (gluten intolerance.)
To get a proper test, your child must undergo a gluten challenge and cannot stop eating gluten before starting the test, no matter how difficult that is. If there is no gluten in the body to react to – there is no way to test. To learn about testing, including home tests, look at Testing For Celiac Disease.
NOTE:
While there are several home tests, it is best to think of them as a starter for your primary care physician who will take a blood test. If the blood test indicates the possibility of celiac disease, the gold standard for a diagnosis is to then undergo an endoscopy.
Given an awareness that gluten may be causing your child to have the symptoms he or she is having, people have been known to consider just stopping the eating of gluten – without a diagnosis. This is not a good idea. You may be consigning your child to the daily challenges of eating gluten-free for the rest of his or her life for no reason. To learn more, see: If You Are Considering Stopping Eating Gluten Without A Test.
TIPS
If your child gets symptoms close to a time when you are aware that gluten was ingested, start keeping a symptoms journal. Include the date, a description of the symptom and the severity, as well as the possible causes. Take the journal with you to each medical appointment as well as appointments with a dietitian/nutritionist.
If a doctor tells you to just stop feeding your child gluten and see if he or she feels better – look for another doctor. (To learn how to change doctors, click here.)
If the tests come up negative, and you find that keeping your child off gluten helps, then keep your child off gluten. Just remember to pay attention to nutrition and be sure your child eats a healthy diet.
Don’t go it alone. Look for someone who is in or has been in your situation, for example, through Charlie’s Oasis, through one of the national celiac organizations, or in local support groups.
To learn more, see our following articles:
Before Testing
Do not be surprised if you visit multiple doctors and have multiple tests before celiac disease or gluten sensitivity are diagnosed. Sad to report, it is not unusual to take an average of 6 to 10 years to get an accurate diagnosis.
While there are a variety of home tests, the medical community considers the best way to determine whether a person has celiac disease is through physician prescribed testing – starting with a blood test followed by an intestinal biopsy via an endoscopy. An intestinal biopsy is the gold standard to confirm the diagnosis of celiac disease. If these tests are inconclusive, there may also be gene testing.
NOTE: For information about medical professionals that take care of people with celiac disease, and how to find one, click here.
Before testing it is necessary to have a sufficient amount of gluten in your system for the test to register your reaction. If you have been gluten-free, this is called a gluten challenge. With a gluten challenge, you will need to consume a minimum amount of gluten every day for at least four weeks for the test to be accurate. (Some celiac centers require 6 or even 12 weeks.) While this can be particularly off-putting if you started to eat a gluten-free diet and are feeling better, a gluten challenge is critical for the validity of the test. If you don’t eat gluten for a long enough period, both the blood tests and biopsies may not show damage even if you have celiac disease - and you will have to go through the process all over again.
NOTE: Be aware that just because you test negative today, does not mean that you will never get celiac disease.
Home Tests
Home tests should not be relied upon as determining for sure whether you have celiac disease.
For celiac disease, IM Aware has a home screening test kit available without a prescription. If you test positive, follow the company instructions about seeing your physician.
For gluten intolerance, there are tests available, but none have been scientifically validated. The only way to diagnose non-celiac gluten sensitivity at this time is by an oral challenge – which means that if wheat allergy and celiac disease have been ruled out and if eating gluten makes you feel sick, a doctor can make a diagnosis of non-celiac gluten sensitivity.
If you have a primary care physician and are considering taking a home test:
It is recommended that you take the results of any home tests to your primary care physician for his or her thoughts. If the test is positive, it is likely that your physician will want to retest you so do not stop eating gluten until the doctor appointment.
To improve your chances of an early appointment - perhaps one before or after normal hours - tell the person who sets the doctor’s appointments about the situation, and that you may be hurting yourself each day you continue to eat gluten but understand that is what is needed by your physician. Also let the person know you are available in the event of a cancellation.
If you do not have a primary care physician and are considering taking a home test:
A home test can be a helpful tool to determine whether to contact a doctor or other health care professional. Do not use it as a trigger to stop eating gluten. Gluten in your system is necessary for testing and you will have to return to gluten for a gluten challenge if something happens and you want to do further tests. A medical diagnosis is helpful for a variety of reasons, including the legal protections available with a diagnosis, for instance at work.
A Physician Administered Blood Test And Genetic Test
A blood test is normally given by your primary care physician when celiac disease is suspected. It looks for immune cells in your blood (lgA) and at the same time a test that looks for antibodies in your blood. The test most often used is called the tTGIgA
The test, which is frequently referred to as a screening tester, may be part of a panel of several tests that look for specific antibodies in the blood stream produced by the body when a person who is sensitive to gluten actually eats gluten: endomysial IgA antibodies (IgaEM).
If the antibodies are positive there is a high likelihood of the presence of celiac disease.
The test only looks for celiac disease. There is no blood test for gluten intolerance.
There is some evidence that there are a lot of false negatives in celiac blood tests. Some people with negative blood tests can still have celiac.
There is also evidence that there may be false positive celiac blood tests. These false positive tests may sometimes indicate another problem such as problems in the esophagus or stomach, ulcers, infection or other autoimmune conditions such as thyroid disease. Thus, it is important to have an endoscopy to confirm the diagnosis of celiac disease.
Gluten Challenge:
It is generally required that you eat food with gluten for at least four weeks before testing. (Some celiac centers require six or more weeks if tolerable.)
While this so-called Gluten Challenge can be particularly obnoxious if you started to eat a gluten-free diet and are feeling better, it is critical for the validity of the test. If you don’t eat gluten for a long enough period both the blood tests and biopsies may not show damage even if you have celiac disease - and you will have to go through the process all over again.
During the challenge, you cannot stop eating gluten, no matter how difficult that is. If the challenge is really difficult for you, let your physician know. It may be possible to shorten the period of time.
Only in rare cases is a diagnosis of celiac disease made without a biopsy obtained through an endoscopy. In those rare cases a patient must have ITG and EMA elevated more than ten times normal and a positive EMA at a second time point.
Most health insurance plans cover routine blood tests. To learn about your situation, confirm coverage with your doctor or insurance carrier. If your insurer denies coverage, consider appealing. To learn how, click here.
NOTE: Be aware that just because you may test negative today, does not mean that you do not have or will never get celiac disease.
Genetic Tests
Genetic testing can determine your risk for celiac disease.
People with celiac disease have genetic markers called HLA DQ2 or HLA DQ 8. If you do not have one of these markers, you do not have celiac disease. However, keep in mind that does not mean that you do not have gluten intolerance.
Endoscopy (Intestinal biopsy)
An intestinal biopsy is the gold standard for determining the presence of celiac disease. To learn about the procedure, click here.
Follow-up Testing
Dr. Peter Green, a noted celiac gastroenterologist, suggests that follow-up blood testing is important.
For an adult, follow-up visits with your physician should occur at 3 – 6 months and 12 months after initial diagnosis. Follow-up visits should occur annually thereafter. (For information about follow-up testing in children, click here.)
Patients should expect a downward trend, even if it takes a year or more to become negative. Blood tests may fluctuate up and down, but should not be dramatic unless gluten is being ingested. Blood tests are not validated to measure adherence to the gluten-free diet nor are they validated to measure mucosa healing or celiac disease in remission. Therefore, you may need a repeat endoscopy to ensure celiac disease is in remission.
Many experts feel that a follow-up endoscopy should be done to document healing.
For a checklist to take with you to your visit for follow-up testing, see Celiac Disease Foundation.
Note: If you are considering postponing testing, to get an overview of things to think about, click here.
TIPS
If you or a family member is going to undergo genetic testing, first check with your health insurance carrier to find out if it is covered. The test can be expensive. If there is no coverage, if you have a choice, consider making it a criteria when renewing your health insurance coverage.
If you test positive for celiac disease and have children, consider having them genetically tested. If they do not have the gene, they will not have to undergo later lab testing for active celiac disease.
When choosing a doctor, look for a gastroenterologist who specializes in celiac disease. In addition to celiac expertise, look for a doctor who has a compassionate personality and who looks at the whole patient.
If a doctor doesn’t fit your needs, look for another doctor until you find the right one for you. If the question were surgery, our advice would be to look for the best for your situation, personality notwithstanding. However, in this situation, you want a doctor who has expertise in the area and who understands what people in your situation are going through. For information about finding a gastroenterologist who specializes in celiac disease, click here.
Dr. Patrick Fratellone, an integrative physician and a person with celiac disease, recommends asking a doctor you are considering hiring:
Have you diagnosed and treated many people with celiac disease?
Do you do blood testing for celiac antibodies? If so, which tests will you do?
Do you test for food allergies? (Other allergies are common in people with celiac disease)
Is there a possibility that my nerve/neurologic symptoms could be related to my gut issues?
Do I need a biopsy of my small intestine, regardless of my celiac blood test results (Yes, you do.)
Who will discuss my treatment if I have celiac disease and who will help me plan my diet?
Could the pathology results of my biopsy be wrong? (The answer is yes, but you would like assurance she or he will continue to work with you if a negative result doesn’t seem right)
What are other symptoms in addition to “gut” or stomach problems that I might expect?
NOTE:
A normal biopsy does not necessarily exclude celiac disease for life.
If you have a skin biopsy and it is positive for dermatitis herpetiformis, you do not need to have an intestinal biopsy – you have a confirmed diagnosis of celiac disease.
For additional information, see:
If You Are Considering Postponing Testing
People have been known to postpone testing, stop eating gluten, and wait to see if that eliminates the symptoms.
This is not a good idea for a variety of reasons.
A diagnosis is necessary to claim benefits at work under the Americans With Disabilities Act and to get some health insurance benefits. For example, if you have a bone density loss because of a lack of nutrients due to celiac disease: to justify a bone density scan, a diagnosis may be necessary.
A diagnosis lets you know that you are not a hypochondriac
A diagnosis will help family and social relationships take you seriously
If you need a diagnosis sometime in the future you will have to go back to eating gluten in a gluten challenge in order to prepare for the test.
Some people do the challenge and testing to have confidence in their need to eat a certain way. For example, a person who believes she has silent celiac disease would like peace of mind that going 100% gluten free is not for nothing.
Celiac disease is a hereditary disease. If you have it, it is advisable to alert the rest of your close blood relatives so they can get tested. If you just have gluten intolerance or wheat allergy, there is no need to alert the rest of your family members.
Researchers are working on a treatment to take if you inadvertently eat gluten. It is likely that you will need a diagnosis in order for the pill to be prescribed and, not incidentally, to be covered by health insurance.
NOTE:
If the reason for the postponement is cost and lack of health insurance, click here to learn how to obtain health insurance. Also check with your nearest celiac disease center about free testing days and whether they have suggestions about paying for tests.
If you have the skin rash Dermatitis Herpetiformis, and your blood tests are positive, you may not need an endoscopy. If a skin biopsy shows you have Dermatitis Herpetiformis, you have a diagnosis of celiac disease.
Living Gluten-Free Without A Diagnosis
Given an awareness that gluten may be causing symptoms, people have been known to consider just stopping eating gluten without a diagnosis. This is not a good idea for a variety of reasons including:
Without testing, there is no way to know whether you have celiac disease, non-celiac gluten sensitivity (gluten intolerance) or a wheat allergy.
If you have celiac disease, and eat gluten, even a small amount, you will be doing long lasting damage to your digestive system—and setting yourself up for related health conditions such as cancer. This may be happening even if you do not have any symptoms. To learn more, read celiac disease.
If you have a wheat allergy, you may encounter anaphylactic shock which is often a life-threatening allergic reaction.
With gluten intolerance, it is more like being lactose intolerant than having celiac disease which is an autoimmune disease. While there is no long term damage, the reaction could be immediate or delayed, and could literally go on for months.
A diagnosis is necessary to claim benefits at work under the Americans With Disabilities Act and to get some health insurance benefits. For example, lack of nutrients due to celiac disease can cause bone density losses. To justify a bone density scan, a diagnosis may be necessary.
A diagnosis lets you know that you are not a hypochondriac.
A diagnosis will help family and social relationships take you seriously.
If you need a diagnosis sometime in the future, you’ll have to eat gluten for possibly as long as two months as part of the gluten challenge with all that brings with it in order to prepare for the test.
Celiac disease is a hereditary disease. If you have it, it is advisable to alert the rest of your close blood relatives so they can get tested. If you just have gluten intolerance or wheat allergy, there is no need to alert the rest of your family members.
If the reason you do not want to be tested is that you do not have health insurance and cannot afford the tests:
Speak with your physician for a recommendation about what to do.
Contact the closest celiac center to find out if and when they have free blood test days.
Check to see whether you can qualify for Medicaid to get the necessary coverage. People have been known to get married to get health insurance. For more information about obtaining health insurance, including Medicaid, click here.
To learn how to live without gluten, read Newly Diagnosed With Celiac Disease and Adjusting to a Gluten Free Lifestyle.