Living well with coeliac disease: The road back to health

A coeliac disease diagnosis requires strict lifelong gluten avoidance – but is that alone enough to heal gut damage and address broader health effects?

Clinical nutritionist and functional medicine practitioner Robyn Puglia – a specialist in coeliac disease, gluten-reactive disorders and autoimmune disease, and a coeliac herself – believes healing is entirely possible with the right approach. Catherine Morgan writes

What’s the damage?

For people with coeliac disease, the gluten protein in foods like wheat, barley and rye triggers an immune reaction that damages the lining of the small intestine. Robyn Puglia, clinical nutritionist and functional medicine practitioner, explains: “To be classed as coeliac disease, there is a very characteristic immune response that damages the small intestine. There are some very specific antibodies – called tissue transglutaminase antibodies and endomysial antibodies – that are autoantibodies to the interior of the gut wall.”

According to Puglia, the disease progresses in stages of inflammation, starting with something called intraepithelial lymphocytosis – an influx of inflammation and inflammatory cells in the wall of the gut – and ending in total villus atrophy, where the tiny finger-like projections (villi) of the small intestine are completely worn away by the inflammation.

“That’s end stage,” she says.

But the damage isn’t confined to the gut.

“The medical literature identifies the belief that coeliac disease is primarily a gut disorder as a historical misperception,” Puglia notes. “Coeliac disease can – and does – affect any and every other tissue in the body. You can have autoimmunity and inflammation in the brain, thyroid, joints, liver, and virtually any other tissue or organ system.”

Nutrient depletion

When the villi are inflamed and flattened, they struggle to absorb nutrients – which can lead to deficiencies, bone loss, and other health complications.

Puglia says there are some very specific nutrient deficiencies to look out for, most notably iron, magnesium, B vitamins – especially B6 and B12, the fat-soluble vitamins A, D and K, and minerals generally.

But she adds, it depends how long the gut has been damaged – and how someone is eating: “If somebody’s eating a very nutrient poor Western diet and they’ve had undiagnosed coeliac disease for 15 years, then they’re going to have a much poorer nutrient status than somebody who has been in the developing stages of coeliac disease for five years but they eat very well.”

Puglia also points out that you won’t see great absorption of nutrients until you restore the architecture of the villi, which can take a couple of years for those at the end stage, aka total villus atrophy.  And even then, you must restore digestive function too.

“I think this point is missed a lot in coeliac disease, and certainly from a conventional perspective, where they’re focused on the restoration of the architecture,” says Puglia.

“But when you’ve had that kind of inflammation and immune system dysregulation, I think it’s best practice to check that somebody is chewing their food properly, that their stomach acid is adequate for mineral absorption.”

Ultimately, to improve nutrient status, Puglia says there must be good nutrient absorption and a nutrient-dense diet; she might also consider a good multivitamin and perhaps additional vitamin A, D, E and K to support somebody immediately post-diagnosis.

Recovery timeline

Whether a person fully recovers – and how quickly – depends on several factors: their age, how long the disease went undiagnosed, the extent of the intestinal damage, and, of course, their diet. But it can range from months to years.

In one study of 182 coeliac patients (60 males and 122 females) treated with a strict gluten-free diet, most achieved complete mucosal healing – meaning their intestinal lining did return to normal. Whilst full recovery often took more than one year – and sometimes two years or more – some individuals showed healing within as little as six months. Women tended to show better healing responses than men, whilst elderly patients generally had lower recovery rates. Another study, however, found that a substantial number of coeliac patients had not achieved full recovery of the intestinal villi, even after five years on a gluten-free diet.

Puglia points out that part of the problem with assessing recovery in clinic is that most people aren’t getting a follow-up endoscopy. “Most people are just gauging their recovery based on how they feel post-diagnosis,” she says. “For some people, it’s like a miracle. They’ve been having migraines or eczema, profound fatigue, brain fog, joint pain, all kinds of things, and within four to eight weeks being gluten free, everything is gone, and they feel better than they felt in years.”

But that’s not the case for everyone.

Some people actually feel worse post-diagnosis, says Puglia, especially if they’ve started eating more gluten-free processed foods. Then there are others who still just don’t feel well. “They get 50% better, but they don’t have that profound recovery that some people do. And in my clinical experience, I’d say that this applies to half the people I see.”

For clients who aren’t responding to a gluten-free diet, Puglia investigates other factors that might be driving ongoing inflammation and hindering proper restoration of their villi. For example: Do they have Epstein-Barr virus (EBV)? Is there another infection? What other specific immune triggers might be at play? She also tests for other autoimmune diseases and food reactions.

The microbial effect

The impact of the inflammation and tissue damage on gut microbes is another area that’s not well understood, says Puglia.

“The microbiome of the small intestine is far less populous than that of the large intestine, where most of our gut bacteria reside. But the small intestine has its own unique microbial community, and that often doesn’t recover without support.

“So, I think understanding the microbial ecology of the small intestine is an important part of recovery for people with coeliac disease. But it’s an area that needs more research – because you can’t just stop eating gluten and expect the microbiome to recover. Wheat and grains are sources of prebiotics, so if you’re replacing those food with gluten-free alternatives, and you’re not really focusing on the types of prebiotics that support the small intestine bacteria, then the microbiome won’t just balance itself – or if it does, it might take quite a long time.”

A targeted approach

When working with coeliac clients, Puglia may recommend testing to guide her assessment – but she says this depends on the individual’s diet and budget.

“If someone’s eating a very Western, highly processed diet, then I’m going to go through the process of getting them onto a nutrient-dense wholefoods diet first,” she explains. “I’m also going to assess how they tolerate fibre. If they’re used to a low fibre diet and we’re titrating them onto a higher fibre one, they’ll probably need some digestive and microbiome support.”

Puglia may recommend an elimination diet, which involves removing some foods and reintroducing them gradually whilst monitoring symptoms. In some cases, she might also suggest food reactivity or stool testing. “If a client is really struggling in those early days post diagnosis, then a stool test and a food reactivity test can really help target our interventions,” she says.

Other considerations may include testing for other autoantibodies, referral for a bone assessment within 12 months of diagnosis – due to the increased risk of osteopenia and osteoporosis, and evaluation of nutrient deficiencies and insufficiencies. Optimising nutrient status, supporting and restoring the microbiome, and calming down inflammation are also key aspects of a personalised plan.

“I’m trying to prevent them from having a surprise problem in five years’ time that we could have prevented by just being thorough,” she says.

A good quality multivitamin and a fish oil might be part of Puglia’s recommendations. She also tends to work slightly more with prebiotics than probiotics but points out that it depends on the individual. “I want to get them on prebiotic foods,” she explains. “So, if they can tolerate it, I’d add onions, garlic, chicory, stewed apple, as well as food-based fibres like flax and chia seeds.”

Other recommendations may include bitters and bitter foods – such as grapefruit, chicory, rocket, radicchio, cacao, chamomile tea, dandelion tea and coffee – to support digestive function; curcumin for its anti-inflammatory benefits; and butyrate and glutamine to support gut recovery.

Mind matters

But nutrition isn’t the only part of the healing equation.

Emotional wellbeing plays a role in recovery, too. Stress and fear – particularly around accidental gluten exposure – can have a real impact on the body’s ability to heal.

“Someone experiencing fear might have a bigger inflammatory response than somebody who feels safe in their body and home,” says Puglia.  “Trusting that your body has what it needs to come through [e.g. an accidental exposure] can radically change the experience of an inflammatory trigger. That needs to be developed in somebody with coeliac disease, because it’s very normal to experience fear and anxiety around a gluten exposure, especially if you’ve been very sick.”

Grief is another emotion Puglia sees in her coeliac clients – in fact, she’s even written a blog post on the subject titled 5 Stages of Gluten-Free Grief.

“My heart really goes out to people who are struggling to be gluten free,” she says. “But the medical literature is clear: if someone with coeliac disease eats gluten even once a month, they increase their risk of a wide range of inflammatory issues – and of all-cause mortality. Cardiovascular disease risk goes up, cancer risk increases, as does the risk of developing any other inflammatory illness. They are also likely to have poor defence against infection and ongoing symptoms such as brain fog, depression, anxiety.”

Empowerment through diagnosis

Whilst a coeliac diagnosis can be difficult to come to terms with, it can also be empowering, says Puglia.

For all those who are struggling right now, she offers these final words of encouragement:

“For many people with coeliac disease, their best health happens after diagnosis. And once you have that diagnosis, it allows you to understand your body and to be in control of your health. When you know the risks, you can take positive, preventative action – for example, to protect your bones. The real risks happen when people are unaware.

“So, not only is it possible to have the best health of your life after a coeliac diagnosis, but you can actually be healthier than somebody who hasn’t had that kind of wake-up call – someone who appears to be good health but who isn’t being proactive because they feel they’re low risk.

“A coeliac diagnosis allows you to have genuinely good health. It lets you know the areas of your garden that require a little bit more tending – and that awareness allows you to be your very best self for the rest of your life.”

About Robyn

Robyn is a Nutritional Therapist and IFM Certified Functional Medicine Practitioner.
She specialises in autoimmune disease, gluten-reactive disorders including coeliac disease, complex cases and unexplained illness.

As well as a busy clinical practice, Robyn is the founder and principal of The Autoimmune Academy; on the faculty of the Academy of Functional Nutrition and Lifestyle Medicine; and the VP of Education for the UK and EU for Cyrex Labs.

Robyn is a well-regarded speaker and lecturer in the UK, presenting on autoimmune disease, gut health, complex biochemistry and clinical case studies.

Sign up to Robyn’s newsletter and find e-books and resources specific to coeliac disease here. 

https://robynpuglia.com

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