How Do I know if I have Celiac Disease or NCGS?
Disclaimer: I speak from my personal experience in the aim of helping others. As always, consult the relevant healthcare practitioner regarding any health related issues/supplements/treatment. Please read my disclaimer on my blog should you want more information
(For the purpose of this article “CD” stands for Celiac Disease and “NCGS” stands for Non-celiac gluten sensitivity)
NCGS is an intolerance or sensitivity to Gluten. It is when you have some symptoms from eating gluten for example gas, bloating, headaches or abdominal pain and discomfort, however, in this instance, gluten does not damage your intestinal walls.
It is similar to other intolerance’s a person may have. For example, you could be intolerant to the legume family. Every time you eat beans of any kind, you develop major gas and abdominal pain that lasts for days. The same can be said for people who have a bad reaction to alcohol, sugar or sulfuric vegetables just to name a few examples. The side effects or symptoms are unpleasant but there is not actual damage being caused to your intestines. An intolerance means your body struggles to digest certain foods.
The term “Gluten allergy” does not apply to either NGCS or CD. An allergic reaction can cause breathing difficultly, anaphylactic shock, hives, swelling of the throat, eyes and other areas and normally this happens within 20 minutes of eating something you are allergic to. (Peanuts or shellfish would fall into the allergy category.) An allergy test is done by means of a skin prick IgE test (Immunoglobulin E (IgE) is a type of protein in the body called an antibody. As part of the immune system, it plays a role in allergic reactions.)Normally you would get tested for the main allergens like wheat, shellfish, eggs, dairy, peanuts, and others.
A lot of people say they have a “gluten allergy” when actually they mean NGCS or CD because it seems easier to make others understand.
Bottom line: gluten allergy(wheat allergy) NGSC and CD are three different conditions.
CD on the other hand, is an autoimmune disease. You have to be carrying one or both the genes that trigger it. (HLA-DQ2 and HLA-DQ8) You are born with these genes. It is said that stress of some type is what triggers the genes to turn on. For some reason consuming gluten is what causes the damage once the genes are switched on.
Gluten enters the intestines and the body sees it as a foreign invader and sends out an all attack to destroy the gluten protein particles. In the process, the body actually ends up harming itself, causing the destruction of the tiny hairs on the intestinal walls called Villi. These hairs act as a barrier and protection and perform many other useful functions such as the absorption of vitamins and minerals. Once they are destroyed, holes in the intestinal walls start to form. This causes a condition known as leaky gut.
Leaky gut  is a very unpleasant, long and debilitating condition to have. (speaking from experience). Leaky gut causes even more issues. Food particles and other pathogens that would normally not be able to enter the blood stream, now have a free gateway from the intestines to the blood stream by means of the holes that were created.
Leaky gut goes onto to create problems like brain fog, depression, weight problems, hormonal imbalances and anemia. Important vitamins and minerals that your body should of been absorbing through the food you are eating, now cannot be absorbed by the body and so you become malnourished. Over time, if this condition is not corrected, certain organs in the body can start to shut down.
It is not known why gluten is what damages the intestines. Studies have shown that stress is the trigger. And Gluten is what the body sees as the invader. Stress can be in many forms such as the death of a loved one, a divorce, immigration, an accident, operation or any other type of trauma or stress either physical, mental or emotional. However, children as young as three are being diagnosed with CD, with no known stressful event or trauma to “trigger” it.
However, it is shown that both the genetic susceptibility and the presence of gluten in the diet are essential for CD to develop.
The thing is you don’t….unless you get tested…
While you are still eating gluten, you must do the following:
Go for a tTG test.(tissue transglutaminase )People with CD who eat gluten have higher than normal levels of certain antibodies in their blood. The test will be positive in about 98% of patients with CD who are on a gluten-containing diet. The same test will come back negative in about 95% of healthy people without CD. In other words if you don’t have CD, it is likely to be negative and you probably have NCGS or another condition in which the symptoms are similar. Then you can investigate further.
A Biopsy of the intestinal wall can check for villi damage which can confirm CD. Your doctor might want to take this step.
A genetic test can be done. This test will tell you if you carry the genes for CD. If you do not hold the genes, it is impossible for you to have or ever develop CD. A negative test will give you peace of mind if you are still unsure. However, a positive test does not mean you DO have CD. It just means you have the potential to trigger the genes at any stage. (but you have to be consuming gluten to trigger it).
With CD, the only chance you have of managing the disease is to stay off gluten 100% for the rest of your life. Not even a bite or tiny morsel of any kind should enter your body. It will damage your intestines, no matter how small or infrequent the amounts you consume.
Just a quick recap. The range of symptoms for for NGCS and CD is quite extensive. You could have multiple symptoms but you don’t have to have all of them. I know for example a lot of people with CD speak about diarrhea and vomiting, two things I never experienced as a standard symptom. I went the other way, with constipation as my sidekick. Some of my most frequent symptoms were pins and needles in all my extremities, all day, every day. Headaches and migraines. Constipation, abdominal pain and bloating every single day. Joint pain, depression, brain fog, anxiety, poor memory, fatigue, anemia, hormonal imbalance, weight loss, hair loss, skin problems and dental problems. All of these started off mild but just got worse over time and continued even after I went off gluten, due to leaky gut.
As explain in this article, if you have CD, and you discover it quite late, you could already be suffering with leaky gut (your gut wall is damaged and is now permeable, allowing in pathogens, food particles and other things into the blood stream). Leaky gut can take a long time to heal, depending on the extent of the damage.
Some say it is due to something called cross-reactivity. Simply type “cross reactivity with gluten” into google and you could read hundreds of blogs and medical posts/studies about this. Cross-reactivity is believed to be when your body reacts to other proteins in a similar way it does to gluten. Your body thinks these proteins are gluten and sends out the same attack command that it would if gluten entered your system. Normally this is short lived. (as in you won’t always have this problem once your gut is healed) And normally this is when you already have gut damage (leaky gut) and your body’s immune system is in overdrive, reacting to anything it sees as a threat. I experienced this while recovering from leaky gut. I reacted to gluten free oats, corn, dairy, alcohol and sugar. This is where the FODMAP diet helped. I won’t go into detail here as I have written a post on this particular subject.
Leaky gut, cross-reactivity, Fodmaps or another underlying issue whereby symptoms are similar to NCGS could be the reason why you continue to react. If you continue to experience symptoms after going off gluten, speak to your health care practitioner to rule out CD (if you have not been diagnosed already) and leaky gut. If your symptoms persist and these two conditions are not present, it is time to look into other possible causes.
The advice I give to anyone experiencing symptoms that point to gluten intolerance is to get professional help and get it early. Have the tTG test while still eating gluten and take it from there. Speak to your health care professional.