Not All Glutening is Equal – Understanding the Asymptomatic Coeliac

We all know one. We all secretly envy them…or, you know, hate them.

The Asymptomatic Coeliac.

They waltz through life NOT having bloating, or tummy cramps, or IBS, or hideous skin rashes.

They just go ‘oops! Oh no, I accidentally ate gluten’.

Whether they feel really really bad about this, or just a little bit bad, or don’t care at all because they just enjoyed hot chips from a shared fryer so life couldn’t be better really…it still does not seem fair and so we (the collective symptomatic coeliac community) feel the need to bring them down a peg or two and let them know, very compassionately of course, that they are still causing internal damage and so, well, the party is over, and Get Responsible!

But really, what the heck is going on here? Why does one coeliac react to traces of gluten with violent cramps, nausea and vomiting, while others get nothing, nada, not even a headache.

What is going on?

Yes, the accepted understanding is that internal damage IS still occurring within those coeliacs who don’t exhibit obvious symptoms to a glutening…their autoimmune system is still in attack mode and launches an offensive against their villi (the nutrient absorption structures within our intestine that supplies all of the essential nutrition to our entire body, via the blood stream), causing the villi to become further damaged (atrophied).

But if their villi are becoming just as damaged as that of symptomatic coeliacs, WHY are they not exhibiting symptoms?? This just does not make sense.

My background as a biology teacher had me asking why?

So lets Science the heck out of this.

(if you can’t be bothered to get all sciencey, just head to the end of the blog for the Takeaways)

Why Are The Symptoms of Coeliac Disease So Different for Different People?

 If symptoms are the result of malabsorption of vitamins & nutrients via the in-situ response within the digestive system, which they are (READ MORE about Symptoms HERE), then anyone who triggers the autoimmune response to gluten within their body by ingesting gluten, & subsequently causing damage to the villi in their digestive system, SHOULD exhibit symptoms, because their digestive system will then of course not function properly, causing a lack of essential nutrition (due to malabsorption) to be delivered around their body.

So what is really going on? Why do coeliacs all respond very, very differently to exposure to gluten, and what on earth is the deal with The Asymptomatic Coeliac?

A very thorough report recently published in BMC Medicine (2019) [1] thankfully addressed this exact question (among other things). And the summarised conclusion was, in layman’s terms, not all glutening is equal.

And here is why.

 

Becoming More Reactive to Gluten

 We have all (from what I’ve heard incidentally through social media chat at any rate) had the experience that the longer we have been gluten free, the more ‘reactive’ we have become to gluten exposure. Smaller amounts of gluten exposure start to trigger more intense, or new symptoms.

When I was first diagnosed, 18 years ago now, my immediate symptoms to eating large amounts of gluten (ie a sandwich) was bloating, immediate fatigue, and recurrent mouth ulcers. I also had an intolerance to large amounts of dairy (eg. a milkshake), although I’ve since discovered it is actually only lactose that causes me problems. Generalised symptoms at the time that I had not yet associated with gluten were frequent headaches/migraines, and iron deficiency/fatigue.

However I could eat gluten free food that was cross contaminated without any observable symptoms. So hot chips from a shared fryer with the family happened regularly, I did not need to worry about my meat being cooked on the same grill as gluten-infused meat, and I could tolerate many products with small amounts of gluten such as soy sauce, flavoured chips, dips etc. It really was just obvious wheat based products (breads, flour etc) that caused me problems.

Now however…cross contamination is my enemy. I have to be careful of it all, or I will react. I also have new and wonderful symptoms such as skin rashes, eye issues, nausea, brain fog, and stronger & more frequent headaches & migraines. Fun times.

So why is this happening.

What is going on physiologically?

 

The Physiology of Coeliac Reactions

 At first, prior to diagnosis and shortly after, the body has usually been exposed to a lot of gluten. So while it believes that gluten is not OK (once the coeliac gene has been ‘turned on’), it is thought to only form the offensive when a threshold of gluten ingestion is reached [2]. However, once gluten is removed from the diet, the auto immune system is triggered into response by smaller and smaller amounts of gluten as it more easily identifies it (wrongly of course) as an enemy (now not usually encountered) that needs to be destroyed. Its response is to damage the absorption point (villi) to prevent gluten from being transferred into the blood stream.

The flow on effect of this, is that many of the other nutrients & vitamins that the body needs to function well, are also prevented from being transferred into the bloodstream, and subsequently transported to areas of need. Thereby causing an element of malnutrition and the inability for the body to function correctly…hence symptoms.

In the BMC Report Coeliac Disease: A Comprehensive Review [1], outlining the latest research and understanding of coeliac disease, the discovery and inherent conclusion was that there IS a different ‘level’ of response by the immune system to gluten within the diagnosed coeliac population. That not all us have the same degree of subsequent damage to villi post gluten exposure, and therefore there will be different degrees of symptoms as a result.

To me, THIS makes so much more sense than the simple idea that “you are also being damaged to the same degree, even though you have no symptoms, so get responsible and strictly avoid gluten like the rest of us”.

 

The Asymptomatic Coeliac

 

The report ventured to conclude that those who are asymptomatic are so because they potentially have minor damage to their villi.

Diagnosis may have been made according to a focus on serology (blood test), and only minor villous atrophy (damage to the villi) [1]. Some are diagnosed as having Potential Coeliac Disease (PCD) because they have a positive serology and coeliac genetic markers, but no villous atrophy. Additionally, according to Alessio Fasano, MD, one of the report’s authors, as endoscopic testing only tends to biopsy a small portion of the first section of the large intestine, making conclusions based on this that the entire length of it is damaged is flawed, when in fact the remaining length may still be perfectly healthy. He stated that it was “intuitive that if your damage is only at the beginning and the rest of the intestine is spared, you may be more in the asymptomatic group” [3].

In other words, if the rest of the intestine is in fact still healthy, it would allow for greater overall absorption of essential nutrition, and therefore the body can function quite well, causing no or minor symptoms. This could thus be the reason why some coeliacs have no symptoms when glutened (ie. asymptomatic). There is little initial damage to the villi (ie. only a small section damaged, but enough to result in a positive endoscopic result for coeliac disease), and potentially only minimal or no damage occurring to new gluten exposure (dependent on the extent of gluten exposure).

The report went on to further propose that some asymptomatic coeliacs may actually be misdiagnosed, based on wrong conclusions to very minor damage (below the recognised required level for diagnosis) to the small intestine, as there can be some discrepancies in testing analysis protocol by gastroenterologists world wide. Additionally, as mild villous atrophy can also be caused by non-coeliac related conditions, such as food allergies, parasitic infections, gastroenteritis and Crohns disease, some cases of asymptomatic coeliac patients would require screening for coeliac genetic markers to verify a coeliac diagnosis [1].

There was also the suggestion from one of the studies reviewed in the report that perhaps the PCD asymptomatic coeliac should NOT in fact remove all traces of gluten from their diet, as in doing so they could cause their autoimmune system to become MORE responsive to lower levels of gluten, triggering full blown coeliac responses & damage, which would otherwise have been avoided [1]. In one study, only 6% of asymptomatic coeliacs who returned to a gluten containing diet developed villous atrophy [4]. This is clearly quite a controversial scientific position to take, according to current coeliac guideline norms, and further research would be required to substantiate this hypothesis.

 

Impact of Later Life Coeliac Diagnosis

In line with other scientific studies however, the report also proposed that coeliacs diagnosed later in life (over 50 years of age), may continue to exhibit digestive symptoms & have persistent villous atrophy even after adhering to a strict GFD [1]. This is often identified as either Refractory Coeliac Disease (RCD), occurring in less than 5% of coeliacs, or ongoing active coeliac disease (OACD)[1,5]. Additionally such patients can have an increased chance of developing the more life threatening symptoms such as bowel cancer and osteoporosis [1]. This is potentially because the impact of consuming gluten for the added length of time prior to diagnosis, has increased the overall effect of nutrient malabsorption on the body [1]. It could also be suggested that the intestine had by then accumulated so much damage that a strict gluten free diet would not be sufficient to fully restore complete healing of the villi and subsequent efficient nutrient absorption, accounting for the ongoing digestive symptoms [6,7].

While I have not been diagnosed with RCD or OACD, I do place myself in this generalised category of later in life diagnoses (at age 37) causing ongoing malabsorption issues despite a strict adherence to a GFD (with bloods and follow up biopsies confirm a normalised gut). I am faced with almost a trailer load of vitamin supplements to take each morning to subsidise what my body is still not absorbing naturally from my food (Vit B12, l-lysine, calcium & Vitamin D…). I also have osteopenia, which is unlikely to be reversed. However, through calcium supplements it is hoped it will not develop into full-blown osteoporosis. You can READ MORE about Coeliac Disease and the link to OSTEOPOROSIS HERE.

 

So what are the takeaways here?

There is a wide variety of responses by coeliacs to exposure to gluten (types & severity of symptoms).

Those who seem to exhibit no obvious symptoms are deemed Asymptomatic

The asymptomatic coeliac may actually be exhibiting non digestive related symptoms that they have not yet linked to their disease (eg. headaches, muscle soreness, skin conditions, brain fog, anxiety, miscarriages etc).

Asymptomatic (& PCD) coeliacs may be experiencing no symptoms because they have less damage to their villi and/or their auto immune system is not as responsive to gluten exposure as other coeliacs, therefore causing less or no damage to their digestive system (villi) with trace exposure to gluten, and no obvious digestive symptoms.

Diagnosis later in life may have caused irreversible damage to some villi of the digestive system, resulting in some ongoing symptoms despite adherence to a strict gluten free diet, and an increased risk in the development of non-digestive coeliac associated malignant diseases

Some asymptomatic coeliacs may actually be wrongly misdiagnosed (ie. not coeliac) due to discrepancies in world wide coeliac diagnostic testing protocol.

Gluten sensitivity by the auto immune system (& symptomatic response) can increase after an individual removes gluten from their diet.

 

While all of these thoughts on how coeliac disease can manifest so differently DO make scientific sense to me, and were presented by a collaboration of well respected scientists, some of the statements are based on quite controversial hypotheses yet to be confirmed by further scientific study. So, current advice from gastroenterologists and local Coeliac Societies should still of course be adhered to.

And the bottom line:

All diagnosed coeliacs should adhere to a strict gluten free diet for life and avoid cross contamination where possible.

In conclusion however, it is clear that not all glutening is equal.

We cannot use a cookie cutter approach to interpreting the effect of the disease on a person’s body, or how an individual should manage their diagnosis. The asymptomatic coeliac may have little or no villi damage from new exposure to small amounts of gluten, or they may still be causing incremental damage that will accelerate over time, resulting in symptoms becoming obvious and eventually more significant to their health. They should of course still avoid gluten, but it is definitely probable that they simply do not have the same auto immune response & subsequent villi damage to traces of gluten that the highly symptomatic coeliac does.

Not all glutening is equal.

We are very thankful for this comprehensive report [1], and for the research that continues world wide, including the ground breaking research from our own Australian team at the Walter & Eliza Hall Institute of Medical Research, headed up by Dr Jason Tye-Din. It is wonderful that the looking glass into this disease is getting clearer and clearer, giving us a more accurate picture of what is going on within our bodies. Hopefully their understanding and discoveries will one day lead scientists to either finally find a cure, or at least better & less impactful ways to manage our disease.

 

What are your thoughts and experiences?

LOVE you to share them in the COMMENTS below.  

 

For MORE INFO on Coeliac Disease you can head to these other BLOGS:

Symptoms of Coeliac Disease

Does A Coeliac Diagnosis Mean That Life Has to Stop?

Are Our Bones at Risk? What All Coeliacs Need to Know About Osteoporosis

Cross-Contamination: When Gluten Free is NOT Gluten Free

Free Downloadable: Coeliac Safe Food Handling Practices

 

Or contact your local Coeliac Society.

 

[1] Caio G, Volta U, Sapone A, Leffler A L.,De Giorgio R, Catassi C, Fasano A. Celiac disease: a comprehensive current review (2019), BMC Medicine.

[2] Fazekas de St Groth, B. Prof of Immunolgy, Centenary Institute. How clean is too clean? Trust your gut instincts (2011) www.thecoversation/healthandmedicine.com. Accessed 25.1.20

[3] Cohen S. Asymptomatic Disease (2018), Gluten Free Living Magazine

[4] Voita U, Caio G, Giancola F, et al. Features and progression of potential celiac disease in adults. Clin Gatroenterol Hepatol. 2016;14;686-93.

[5] Tye-Din J. When the gluten free diet stops working: refractory coeliac disease (2012), Australian Coeliac Magazine

[6] Treatment of celiac disease. The University of Chicago: Treatment Disease Centre. www.cureceliacdisease.org. Accessed 25.1.20

[7] Lanzine A, Lanzarotto F, Villanacci V, Mora A, Bertolazzi S, Turini D, Carella G, Malagoli A, Ferrante G, Cesana BM, Ricci C. Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten free diet (abstract). 2009. US National Library of Medicine. www.ncbi.nlm.nih.gov.com. Accessed 25.1.20