How Do I know if I have Celiac Disease or NCGS?

Note: I am not qualified in medicine or nutrition. I speak from my personal experience only 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

The difference between celiac disease and Non-Celiac Gluten sensitivity (NCGS)

[Warning: this post is pretty long! But it will be detailed and one of my most comprehensive posts to date.]

I’ve been wanting to write this post for the longest time for a few reasons..

  1. A lot of this was never explained to me all those years ago when I was told I had Gluten intolerance. In fact, some of this information I only found out in the past two years and I have been off gluten for 7 years! It’s a continual learning process!
  2. Knowing which one you have can have an impact on your life (will explain this further on)

NCGS (Non-Celiac Gluten sensitivity)

(For the purpose of this article “CD” stands for Celiac Disease and “NCGS” stands for Non-celiac gluten sensitivity)

So let’s talk about this first one. NCGS means you do not have Celiac disease and also cannot ever get CD. 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.

Why it’s not a “Gluten Allergy”

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. I did this when I was first diagnosed and it was actually only the past year I have been referring to myself as having Celiac Disease.

Bottom line: gluten allergy(wheat allergy) NGSC and CD are three different conditions.

Celiac Disease

CD on the other hand, is an auto immune 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 [2] 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.

What causes CD?

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. Strangely though, there are a large number of CD patients that are not diagnosed before the age of 40. It is not known why people who are genetically prone to develop CD since their birth and consume gluten growing up, do not develop the disease much earlier on.

My “trigger”

What was my trigger? Only in hindsight have I thought about this and come to the following conclusion:

Growing up I had definite digestive issues. As a teenager I remember being very aware of excessive bloating, especially after eating a meal that involved bread. It was in mid twenties, after the birth of my two children, that I began to develop symptoms like pins and needles in my hands, feet and arms and oddly my nose. I had headaches, severe hay fever, gas, abdominal pain and bloating, nausea, depression, brain fog and poor memory.

My son’s birth did not go according to plan. He was 10 days overdue. I had prepared for natural birth and had gone to antenatal classes with my husband. After 10 days with nothing happening, it was decided to do a C-section. It was all very sudden and the whole experience was awful. The anesthetist could not find the location to insert the epidural in my spine. I was in shock and denial that it was happening. I had a bad reaction to the anesthetic and barely remember the first 24 hours after my son was born. I passed out and what happened is that they kept him separate from me for those crucial first hours and unbeknown to me gave him a bottle of formula without my permission. (apparently because I was passed out and could not be roused to breast feed). What resulted is that I did not bond with my son initially and this lasted for several months. I had post natal depression and ongoing problems with breast feeding which led me to give up breastfeeding. I felt like I had failed as a mother. Not only did I not give natural birth, but I could not do the most natural thing: breastfeed my son.

What should of been an enjoyable, exciting and amazing time in my life, was a very stressful and traumatic time. This could of been when my CD was first triggered. Two years later, my daughter was born (this time by elective C-section) and a few months after her birth, I went on a diet to lose my post pregnancy weight. One of the things I did was cut out bread, rolls, pasta, cakes and cookies and I started to notice how much better I felt. By now I was 24. It was in the following 6 years that I learned to listen to my body and for the most part, I realized that it was eating anything with wheat in that seemed to make me feel terrible. I was not 100% strict about it and thought I had a problem with wheat. I had not gone to any doctors or professionals at this stage and the research I did was minimal as back in those days we still had “dial up” for internet which took long and was costly. I worked and had two small children, so there wasn’t much time to worry about was causing it and for the most part, I just thought it was all related to motherhood. I stayed away from pasta, bread, rolls, croissants for the most part but still ate cookies and cake now and then. It was better but still there. In hindsight, I think it was the birth of my son that triggered my CD, but because I wasn’t eating gluten all the time, the damage was a slow process over many years. Had I been on a full gluten diet, I think the damage would of been pronounced much sooner.

Thinking back to my childhood, I know I had digestive issues early on and was quite a sensitive child. Whether or not they were the early symptoms of CD back then but no full blown trigger yet is hard to know.

In 2009, My brother died suddenly of a brain aneurysm. I was 30 years old. It was a huge shock in my life and sent me on a downward spiral of depression for a few years. Two years later my second brother passed away and three years later my Dad died. My symptoms became unmanageable and I was just not coping during these years. I began to take a harder look at my health and dug deep to try and get answers. It was in 2014 that I got professional help and had a test done tTG (Tissue transglutaminase antibody) which was positive. I went off gluten 100% from that time on.

Going off gluten was not the quick fix unfortunately. By this stage I had leaky gut from the damage gluten had caused which took years to heal. I had anemia, depression, hormonal imbalances and severe dental damage. All of these things were hard to deal with, but all combined, along with grief, was overwhelming. Some days I do not know how I made it to the next day. I had to go on a diet called the FODMAP diet for a year and a half and it was only on the other side that I finally began to see some hope. It took absolute 100% adherence to a no-gluten diet and professional help to treat leaky gut as well as following the FODMAP diet that my body was able to heal.

It has only been the last few years that I have had good health once again. It has taken a lot of work, research, endless supplements, a good routine of exercise and implementing other strategies that has helped to get my health back.

So how do you know if you have NCGS or cD?

When I had the blood test I was told I would need to go off gluten forever. She explained that gluten had damaged my intestines and caused leaky gut which could be repaired. That was it. I was not told I had Celiac Disease specifically. I was not told that I could get a biopsy to confirm gut damage. I was not told it is an autoimmune disease and I was not told that it is genetic and one can get a genetic test done to see if you carry one or both genes. However I developed leaky gut and by cutting out gluten, some of the symptoms I had been experiencing stopped. I say some symptoms as some continued as a by-product of the damage that would take years to heal.

The thing is that with NCGS, you should still go off gluten. It may not be damaging you internally, but if it is causing symptoms that make life unpleasant, only going off gluten will stop that from happening.

Before you go off gluten, while you are still consuming a diet with gluten, you should go for a blood test. Get professional help and don’t self diagnose.

HOWEVER: before you go off gluten, while you are still eating gluten, you must do the following to make sure which one you have:

  1. 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.[3] 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.
  2. A Biopsy of the intestinal wall can check for villi damage which can confirm CD. Your doctor might want to take this extra step. (very few actually get this done)
  3. A genetic test can be done. This is quite costly ranging from R3-4K here in SA. 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).

Having NCGS means you could technically “cheat” as the symptoms are superficial in the sense that no actual damage is being done to your gut. (please note that I am not advocating this, merely stating this as a technicality). If you did not have to avoid gluten 100% because you knew it was not affecting your gut, would you? I know that I if I had NCGS I would occasionally eat gluten despite the effects but because I know I have CD, I cannot take that chance ever.

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.

Knowing the difference is important because if you do “cheat” on occasion and you do actually have CD, you are going to end up with a lot of damage to your intestines, leaky gut and a host of other problems you do not want.

A Note on Symptoms

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.

Why do I continue to have symptoms even after going off gluten?

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.

Here are some other posts I have written to help you in recovering from leaky gut. (based on my own experience) As always seek professional help from medical experts.

Things you can do to aid in leaky gut recovery

Things to avoid as you recover from leaky gut

The FODMAP diet

How Exercise, PTSD, and stress affect your recovery

Grains and why they could cause cross-reactivity when recovering from leaky gut

Lectins and why they could cause cross-reactivity when recovering from leaky gut [4] [5]

The bottom line

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. Some people walking around thinking they just have a gluten intolerance and still “cheat” could actually have CD without knowing it. Speak to your health care professional and ask for the tTG test.

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