I guess I’m already going against what I said I would do… I said I would focus most of my studies on gluten sensitivity and yet here is another study related to coeliac disease. Part of the problem is that I’m finding so many interesting studies that are related to CD! But it’s also that these studies relate to issues in diagnostic procedures and gluten-intolerance awareness, which I think is a major problem in our society. So I’ve brought another case with me this week, similar to last week’s; however, this one falls a little more under the radar: coeliac disease in the elderly.
This study, by Yoav Lurie and colleagues, is a retrospective chart review from Israel (charts from 2003-2005), but it is very applicable to North America, and is written for a North American audience; it’s even published in the Journal of Clinical Gastroenterology (1). The study was conducted in 2008; so technically, any statistics mentioned may be slightly outdated, though they are still very relevant. This is a small study with 7 patients (all diagnosed with CD after the age of 60) that were interviewed as pertains to their lives before and after diagnosis and going gluten-free. Unfortunately, one patient was deceased by the time the study was conducted, and could not be interviewed.
Before I get into things, I want to quote something from the article, taken from a letter published by an Australian physician who was diagnosed with CD at 80 years old: “In his letter Dr. Woods also gives a striking description of the symptoms that he experienced including ‘aphthous ulcers [i.e. canker sores], all sorts of abdominal pains, diarrhea and constipation, dermatitis herpetiformis [see link], and profound fatigue’ that were all referred to ‘old age’ and remarkably alleviated once on [a] gluten-free diet.”
I think that sets the stage, don’t you? Now back to basics.
This study mentions some really interesting and important things:
- Most of the newly diagnosed cases of coeliac disease are in people in their 40’s and 50’s.
- The elderly compose as high as 25% of new CD cases.
- We’re now acknowledging a large range of signs and symptoms for coeliac disease (despite the condition being so largely associated with the gastrointestinal system); most patients are diagnosed without these “classic” intestinal symptoms.
- It’s estimated that as many as 16% of neurological disorders of unknown origin are associated with CD; epilepsy, ataxia (loss of control of body movements), neuropathy (disease/dysfunction of peripheral nerves), and memory impairment are more commonly reported, but there have also been cases of CD disguised as multiple sclerosis (see link) or lupus erhythematosis (see link).
- In elderly patients with CD, those suffering tend to be diagnosed after a long lag period, which could largely affect their quality and possibly even length of their life.
- Our understanding of CD as a disorder in the elderly leaves something to be desired… it’s a very applicable diagnosis that is not considered often enough by doctors. Here’s a shocker (I’m not sure how much things have changed in these five years since the study): a survey conducted around the time of the study noted that, among family physicians in the United States, only 32% were aware that coeliac disease in adulthood is common!
All of these themes essentially highlight one problem that is the main idea here: symptoms in patients within a huge demographic are all-too-often wrongly attributed to old age instead of coeliac disease! I can’t tell you how hard this makes me face-palm. I wonder how many times we’d need to smack the uninformed doctors in the forehead before they’d clue-in to what’s going on…
Now on to the nitty gritty stuff!
Patients ranged in age from 61 to 86 with a median of 71.5 years. The most common presenting features of the disease were weight loss (in four of seven patients) and iron-deficient anemia (five of seven). Five patients also were experiencing abdominal pain and diarrhea. Two patients had elevated liver transaminases (i.e. an indication of liver damage) and two had severe early osteoporosis (for more info on osteoporosis and CD, see “Bone mineral density in adult coeliac disease: An updated review”; see link). Three had a folic acid deficiency (folic acid is an essential nutrient; it plays a role in amino acid metabolism and nucleotide metabolism, i.e. DNA synthesis and related functions).
In most of the cases, there was a significant lag in diagnosis. The range was 2 months to 9 years, but the median duration of lag was 8 years; this represents the amount of time between when patients started reporting their symptoms to doctors and when they were finally diagnosed. Three patients had experienced their symptoms their whole life. Unfortunately, the patient who died before a chance at being interviewed developed a fatal intestinal T-cell lymphoma four years after being diagnosed with CD.
That patient may not have developed a fatal cancer if diagnosed sooner, though this can’t be said for sure. Here’s the thing about intestinal T-cell lymphomata (or enteropathy-associated T-cell lymphomata): they are more common in people with what is known as refractory coeliac disease (2), and those with coeliac disease who do not adhere to a strict gluten-free diet (3). (That’s why I tell you to get tested for coeliac disease before doing a gluten sensitivity self-test! If diagnosed, you’ll likely be stricter in your diet than if you label yourself as gluten-sensitive)! Refractory coeliac disease (RCD) is diagnosed when, despite sticking to a strict gluten-free diet, symptoms still persist after a 12-month period (and other causes are excluded) (2). However, although I’m not sure there is scientific research to back it up – I’d have to do some digging – I have heard that RCD is caused by food compounds with a similar structure to gluten (I believe some are found in oats and quinoa, for instance), and I think there are some rare clinics that help patients deal with this. I started to look into the subject a very little bit when I saw this video a long time ago (I imagine few clinics exist that can do this): see video here.
Anyway, back to the main conversation. There was one patient who’d had an eight-year history of severe peripheral neuropathy, and an MRI brain scan showed multiple white matter lesions in the cerebral hemispheres. Though a follow-up MRI was not available, the patient’s neuropathic symptoms had completely resolved after starting a gluten-free diet. This patient had also dealt with lifelong migraines, another issue that dissolved after going gluten-free.
All patients had an impressive response to the gluten-free diet, having their symptoms disappear and having gained weight back. Two female patients who had experienced a long-lasting cognitive decline attributed to Alzheimer dementia also saw significant improvement after adhering to the diet. Now that’s impressive.
Overall, this study demonstrates the increasing need for coeliac disease screening in the elderly. Arguably, everyone should be screened, considering the increasing range of conditions that are attributable to the disease. It seems that gluten-intolerance-related disorders are increasing in numbers every year! This study brings up some disorders that I’ve never seen to allude to gluten intolerance before (like Alzheimer’s disease and multiple sclerosis) and suggests that coeliac disease is vastly underrated as a prominent disease in our culture.
So here’s a question: are your grandparents/parents suffering from “old age” or a treatable condition?
1) Lurie, Y., Landau, D.A., Pfeffer, J., Oren, R. Celiac disease diagnosed in the elderly. J Clin Gastroenterol 2008;42(1):59-61.
2) Nijeboer, P., van Wanrooij, R.L., Tack, G.J., Mulder, C.J., Bouma, G. Update on the diagnosis and management of refractory coeliac disease. Gastroenterol Res Pract 2013;2013:518483.
3) Silano, M., Volta, U., Vincenzi, A.D., Dessì, M., Vincenzi, M.D., et al. Effect of a gluten-free diet on the risk of enteropathy-associated T-cell lymphoma in celiac disease. Dig Dis Sci 2008;53(4):972-6.