Coeliac Disease and Non-Coeliac Gluten Sensitivity

There is huge debate and research going on right now on coeliac disease (CD) versus non-coeliac gluten sensitivity (NCGS). For a long time it appears that NCGS wasn’t  a diagnosis that was made but with more and more people with text book symptoms testing negative to CD it’s becoming more and more written and talked about.How can you tell if you have coeliac disease or non-coeliac gluten sensitivity? Have you been officially diagnosed as coeliac? Perhaps you haven’t but you know that a gluten free diet makes you feel like yourself again so you figure you must be coeliac? This may not always be the case! A number of people I’ve spoken to don’t seem to be sure about which they are. They just know that staying away from gluten helps. The symptoms are similar but the consequences can be very different. You may be suffering from bloating and stomach pains, diarrhea or constipation, feeling depressed and fatigued, have missed periods, unexplained anemia or weight loss or perhaps even have none of these symptoms. A biopsy is the only way to get a coeliac disease diagnosis but if this test comes back negative does it mean you’re definitely not coeliac? Would you go in search of a second or third opinion?

Science wise, Coeliac disease is an autoimmune disorder caused by a reaction to the protein gluten, found in wheat, rye and barley. This protein triggers your immune system to overact with antibodies. Overtime these antibodies wear down your villi, the finger like things that line the wall of your small intestine. The villi (fingers) are what absorb nutrients from food so if you are coeliac and these things are being destroyed, it becomes extremely difficult to absorb nutrients. This not surprisingly can result in a variety of different problems.

Non coeliac gluten sensitivity is something different. Sufferers of NCGS will test negative for the coeliac disease test but they will also feel much better by keeping to a gluten free diet. Sufferers of NCGS will get similar symptoms to coeliacs if they eat gluten but eating gluten will not result in intestinal damage.

I found this article written in 2007 by a gastroeterologist and some interesting comments by various people who tested negative for CD but continued on a gluten free diet as it cleared up their symptoms.

It appears that if we have DQ2 and DQ8 genes, we have a genetic compatibility to coeliac disease. It doesn’t mean that everyone with this gene pattern will get it but without this gene pattern it’s not possible to develop the disease. If you have this gene pattern is it still safe to eat gluten? Will eating gluten increase your odds of becoming coeliac later in life? So many questions that we hope future research will answer for us…

If you are told you are gluten sensitive but not coeliac are you still just as careful and strict when the consequences are not as severe? If you are coeliac like myself, is is the short term symptoms or the long term consequences which drive you to be so careful? I would love to hear what you think about all of this if you are on a gluten free diet for whatever reason…

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  • David Johnstone

    Feb 4th, 2011

    This is very interesting. I had the blood test 5 times and each came back negative. My biopsy showed signs of damage, but it took a genetic test to prove a diagnosis.

    I started a Gluten Free diet before my diagnosis and felt instantly better for it. But didn’t feel the pressure or weight of a full Coeliac lifestyle until after. At first it was something different to explore and try, but the realisation of longterm effects reinforce the importance of living Gluten Free.

    Was only thinking today that I hope the diagnosis is correct, as it a tough thing to live with. If I was NCGS I would most definitely let it slip when traveling or eating out. It would save face or embarrassment and help me deal with unsympathetic work mates.

  • My kiddo (age 2) has been officially diagnosed with NCGS, but we haven’t tested her via biopsy or genetics. I’m going to fork over the cash for an independent lab to do the genetic testing pretty soon, because I want to know if she’s full blown celiac or not. I refuse to put her back on gluten just for a positive test. The last time she had gluten (after 30 days GF), she was literally sick for 4 days with the worst diarrhea EVER. She was miserable, in pain, had reflux, cried, slept a lot, and pretty much wanted to spend that whole 4 days in my lap. Nobody could PAY me to give the child gluten again.

    Laura, have you had the gene test done?

  • @David. They couldn’t confirm diagnosis even though your biopsy showed signs of damage? I agree with your comment that if you were NCGS you would be more likely to risk it. I would too if I knew the long term consequences weren’t so real and scary. Talking to other coeliacs and doing research for this blog makes me want to go back and talk to my doctor about what my results actually were. Things were a blur at the time of being diagnosed and I can’t remember what they told me other than ‘You are coeliac’ I want to see my results in writing now that I know a bit more about all of this.
    @Laura, interesting. Good to hear some people are being diagnosed as NCGS but can doctors say that she isn’t coeliac without a biopsy? I have not had the gene test done. What does this involve? A blood test? I remember there being one of the blood tests they couldn’t do on me for some reason, perhaps it was this..what would the gene test prove?I’d like to get this done when I return to the UK.

  • An interesting and related article on Clues to Gluten Sensitivity from the Wall Street Journal.

  • I was diagnosed NCGS by Micki Rose in England. She can advise a variety of tests, so you know for sure!! You can find her at purehealthclinic…she’s absolutely amazing!

  • @Nele, interesting. Good to hear that people are being diagnosed as NCGS.

  • I’m a DQ2.2/2.5 but antibody negative, perhaps due to eating a low carb diet for years. During that period I wasn’t on a gluten free diet since I didn’t look hidden gluten. I had a bad reaction to a cracker I had to eat for a medical test and then went gluten-free. Unexpectedly, it cured my 15 months of insomnia. I would never dream of going off a gluten-free diet now since life without insomnia is so much better. It doesn’t matter to me if someone labels me celiac, NCGS, atypical celiac–the terminology is still evolving. I just know I have to eat strict gluten-free paleo to be healthy. I feel badly for those gluten-sensitive folks that don’t use their situation as a wake-up call to eat paleo and instead sub in all sorts of processed junk that’s equally bad for them.

  • Summer Plum

    May 12th, 2012

    I’m allergic to rye, and my body has decided that all gluten looks enough like rye that it goes into allergy mode when gluten is introduced. So I avoid all gluten. For me, a whiff of flour is enough to tighten my chest, and accidental ingestion of even a small amount causes migraines, black outs, and days to weeks of allergic response misery.

    I have several celiac friends, so have long been careful for their sakes, and have another friend who is gluten sensitive but works in a cupcake shop – as long as she doesn’t eat gluten, she’s okay.

    My next to last gluten experience landed me a concussion that I am still paying for more then 90 days later. I avoid it like the plague with all seriousness. Of course, I do the same with all my other allergens too. I like being alive. 🙂

  • I had a lot of abdomen pain last year (2011) I’ve had a couple of biopsies done – all negative. Had gene test which was positive. I stopped eating gluten and began to feel better, I made the mistake of eating some Brown Rice, I was in agony for 3 days. The problem now is my gut is so damaged by the grains/gluten that I have developed massive food intolerances. I can now only eat a few root vegetables. I don’t think I will make it til christmas (2012) things are very bad. I saw loads of drs over the year and not one suggested it could be a gluten intolerance. DON’T RISK EATING GLUTEN IF YOU KNOW YOU ARE INTOLERANT.