Could You be Gluten Sensitive Even if you Tested Negative? - Inna Topiler

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Could You be Gluten Sensitive Even if you Tested Negative?

Confused about gluten testing? Find out if its celiac, gluten sensitivity or gluten intolerance

The Investigation

Chances are you know someone with a gluten sensitivity despite reports that only 6-7% of the population suffer from it. That’s because testing is tricky and false negatives can make people think their health issues are caused by something else. In this episode, I want to break down what’s going on and help you determine if a gluten sensitivity might be at the root of your health mystery. 

Understanding Gluten Intolerance

Gluten is a protein found in wheat, rye, barley and oats. A person with gluten intolerance cannot digest the protein portion of these grains which triggers an immune response to what the body deems a foreign substance. This immune reaction causes inflammation in the digestive system and damages the lining tissue which, in turn, can cause symptoms like fatigue, bloating, diarrhea, constipation, gas, and cramping. The compromised lining can leave the person more susceptible to bacteria, parasites, and funguses. 

Overtime, if a person who has a gluten intolerance continues to eat gluten, their small intestine may also become damaged which leads to malabsorption of nutrients. This can cause fatigue and weight gain. And, the person will be at an increased risk of insomnia, osteoporosis, hormone imbalances, inability to deal with stress, and mood swings. Over time, additional issues may arise like lactose intolerance, depression, leaky gut syndrome (leading to higher susceptibility to infections and other illnesses.)

Gluten Intolerance is the Root Cause of Many Health Issues

Symptoms of Gluten Intolerance

There are many symptoms that could be the result of a gluten intolerance. How many from this list can you check off? 

  • Weight gain
  • Unexplained fatigue
  • Difficulty relaxing, feel tense frequently
  • Unexplained digestive problems
  • Female hormone imbalances, (PMS, menopausal symptoms)
  • Muscle or joint pain or stiffness of unknown cause 
  • Migraine like headaches
  • Food allergies/sensitivities
  • Difficulty digesting dairy products
  • Tendency to over consume alcohol
  • Overly sensitive to physical and emotional pain, cry easily
  • Cravings for sweets, bread, carbohydrates
  • Tendency to overeat sweets, bread, carbohydrates
  • Abdominal pain or cramping
  • Abdominal bloating or distention
  • Intestinal gas
  • “Love” specific foods
  • Eat when upset, eat to relax
  • Constipation or diarrhea of no known cause
  • Unexplained skin problems/rashes
  • Difficulty gaining weight
  • Anorexia
  • Bulimia
  • Rosacea
  • Diabetes
  • Osteoporosis/bone loss
  • Iron deficiency/anemia
  • Chronic fatigue
  • Candida
  • Hypoglycemia

If you checked off 4 or less it is very unlikely that you have a gluten sensitivity. If you scored between 5 and 8 there may be a reason to suspect it. If you scored 9 or higher there can be a good chance that you are gluten sensitive.

What is a Gluten-Free Diet?

Gluten-free means avoiding all foods containing gluten, including wheat, rye, spelt, bulgar, semolina, couscous, kamut and some oats. Gluten can be hidden in processed foods and thickened products such as sauces and soups so read labels carefully. While this can be an adjustment at first, eating gluten free if you are sensitive will make a huge difference in your health.

What’s the Difference between Celiac and Gluten Sensitivity?

Celiac disease is an extreme intolerance to gluten where eating gluten will actually damage the lining of your intestines and cause mal-absorption along with many other symptoms such as all types of GI issues, skin issues, headaches, arthritis, depression and the list goes on and on.

A gluten sensitivity is when you do not have full-blown celiac and your intestines are not completely damaged but eating gluten makes you feel worse and can often cause very similar if not the same symptoms of those with celiac disease.

What are the Problems with Celiac Testing (and Why is it so Hard to Get a True Answer)?

Testing for this is very tricky because the occurrence of false negatives is often likely. The only way to get a true celiac test is to go to the GI doctor and have a biopsy. Your intestines are lined with hair like structures called villi and in healthy intestines; they stand straight up like a shaggy rug. When a person has celiac disease, gluten causes damage to the intestines and the villi lose their integrity and become flattened. The biopsy looks at the state of the villi and only if they are flattened can there be a true celiac diagnosis. Once gluten is removed from their diet, the villi can be revived fairly quickly and thus the intestines will heal. 

Patients who already started a gluten free diet prior to their biopsy can often get a false negative because of this. To get a proper diagnosis, the patient should eat gluten (equivalent to at least 1 slice of wheat bread) every day for 30 consecutive days before the biopsy

There is also a blood test that can identify the antibodies the body produces against gluten. Some GI doctors use this as a celiac test. The problem here is that the gluten antibodies are produced in significant numbers only if the person has a good functioning immune. With a weak immune system, antibody production will be low and lead to a false negative result.

Furthermore, there are several types of antibodies that can be tested such and some of the main ones include IgE, IgG and IgA. IgE shows an immediate response and this often comes out negative unless someone has an anaphylactic shock type reaction to the food which is far less common. IgG and IgA are the delayed antibodies and are more likely to be found through testing because gluten-containing foods take several hours to several days to show symptoms and inflame the immune system. 

Testing for Gluten Sensitivity

When a celiac test is negative but someone feels worse after consuming gluten (this can happen from 1-72 hours post consumption) they most likely have a sensitivity to gluten. The reason the other tests are negative is because gluten reactions vary in strength. The easiest way to describe this is if you think of a spectrum from 0 to 100 with 0 being no sensitivity and 100 being extremely sensitive. If someone is all the way at 100 it would equate to celiac disease and/or extreme intolerance and often result in a positive biopsy but anything below that would not show up on those tests. So the problem is what if you are at 95? or 85? These cases would show up negative for celiac but as you can see from the example, 95 is still very high on the spectrum and the person would have a pretty severe sensitivity to gluten with all the same symptoms.

Testing for sensitivities is also tricky because people can react to gluten through various allergenic pathways and being able to find a possible reactive pathway is the way to see a true result. The major proven pathways include antibody pathways and inflammatory cell mediated pathways.

Antibodies can also be tested in blood, but only the IgA and IgG should be used (not IgE) as those are the delayed ones. IgA and IgG antibodies can also be tested in stool and saliva. There are different opinions on what is best (some say gluten is in contact with stool more than blood or saliva thus stool may be more accurate) but most likely testing in all 3, (blood, saliva and stool) is probably better. A positive result in any one of these means there is a sensitivity. 

A Negative Gluten Sensitivity Test Does Not Rule Out Gluten Sensitivity

It is possible that all 3 antibodies tested in all 3 body fluids can turn out negative but a reaction can still be occurring. This is possible because the body can react to gluten on a cellular level without necessarily producing antibodies, or if the antibody response is weakened due to immune weakness and other diseases.

Another way to look at gluten sensitivity is through the inflammatory pathway of the white blood cells. The ALCAT technology has made their name in this area and they test by collecting blood, separating out the while blood cells and then introducing gluten to the white blood cells to look for information. If the while blood cell changes shape, the result is positive. The severity of the change in the white blood cell indicates the severity of the sensitivity. If there is no change to the white blood cell, there is no sensitivity.

Persistent Gluten-Sensitivity Symptom Despite Negative Tests

Another big piece of the gluten puzzle is a gluten intolerance due to the slight genetic change of the seeds of wheat. In Dr. William Davis’s book Wheat Belly, he explains how a geneticist (about 50 years ago) was able to slightly modify the wheat seed to allow the wheat plant to grow faster and be harvested more often. This was lauded as a great help in the fight against world hunger but the genetic modification in the seed created a plant that now has a higher gluten content. Plants can naturally mutate from strain to strain over time but this process takes hundreds of years and this was done overnight. The human DNA is not familiar with this new strain of wheat and thus there are many people who are intolerant to this new wheat strain. Dr. Davis uses a wonderful analogy in his book to describe it. The new wheat is 99.9% genetically the same as the old wheat which doesn’t seem like it would be that harmful, but apes are also 99.9% genetically the same as humans and yet we are quite different.

Intolerance to this genetically modified strain of wheat is not a blanket intolerance to gluten which is why eating it causes symptoms but a gluten sensitivity is not detectable in tests.

The Role of Genetics in Gluten Sensitivity and Gluten Intolerance

Genetics are often ignored in the gluten intolerance discussion. Genes are something that you are born with and are carried down from generation to generation. There are a set of genes recognized as celiac genes and they are called HLA DQ2 and DQ8. We now know that the DQ2 gene has 2 pieces each with 2 alleles for a total of 4 and the DQ8 has 1 allele for a grand total of 5 different alleles. We need to see all of them. Studies show that if you have a specific number of these gene segments, your body is not designed to process certain gluten proteins and therefore you may have celiac disease already or will be likely to become gluten intolerant/sensitive.

Gluten sensitivity is not a disease like celiac disease but can be looked at as a state of genetics. If a person is not designed to process gluten properly based on their genetics but eat it anyways, the end result is a constant attack on the immune system which can subsequently lead to autoimmune disease. But, if we knew a person’s propensity was to be gluten sensitive, we can stop the disease before it happens.

Testing for the Gluten Genes

Most labs only do 2 of the gene pieces, but it is essential to have a complete profile of all of them. I have been searching for labs and found a panel that does all the pieces. They are a subsidiary of Labcorp so there is a good chance the test may even be covered by insurance which is a huge plus!

Best Test to Determine Gluten Intolerance

The only way to know for sure if gluten is an issue for you is to look at all the pathways through various tests and if any are positive then you have an issue with gluten. Please don’t just take one negative result as an absolute – especially if you do not feel well when you eat gluten or if you have an autoimmune disease.

After a lot of research, I believe that looking at genetics holds the biggest key in the gluten puzzle. All the other tests measure only a fraction of how a person’s immune system can react to gluten but genetics can actually tell us what the immune system is going to do in the future.

You cannot control what genes you are born with, but you can identify them and change your diet and lifestyle to accommodate them to both heal a health issue as well as prevent a potential future health issue.  

Eliminating Health Mysteries

Could gluten be the root cause of your health mystery or that of someone in your life? 

If you find that you don’t feel well when eating wheat at restaurants, this may be your issue. Eating organic wheat would be helpful for you as well as avoiding wheat when going out as most restaurants do not use organic wheat. 


Resources mentioned – tests for gluten sensitivity


Stool Test 

Vibrant America Testing

Genetic DQ2/DQ8 Testing


Related Podcast Episodes:

#60 Demystifying Food Sensitivities (and What You Can do About Them)


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