Celiac disease-related conditions: Who to test?, 2024, Zingone et al.

[ME/CFS Skeptic]

Abstract
Celiac disease (CeD) is a chronic immune-mediated condition triggered by gluten consumption in genetically predisposed individuals. Approximately 1% of the general population is affected by the disorder. Disease presentation is heterogeneous, and despite growing awareness among physicians and the public, it continues to be underestimated. The most effective strategy for identifying undiagnosed CeD is proactive case-finding through serologic testing in high-risk groups. We reviewed the most recent evidence on the association between CeD and over 20 conditions. In light of this review, CeD screening is recommended in individuals with (I) autoimmune disease and accompanying symptoms suggestive of CeD, (II) diseases that may mimic CeD (e.g., irritable bowel syndrome, inflammatory bowel disease, and microscopic colitis), and among patients with (III) conditions with a high CeD prevalence: first-degree relatives, idiopathic pancreatitis, unexplained liver enzyme abnormalities, autoimmune hepatitis, primary biliary cholangitis, hyposplenism or functional asplenia with severe bacterial infection, type 1 diabetes mellitus, Hashimoto's thyroiditis and Grave's disease, Sjögren's syndrome, dermatitis herpetiformis, recurrent aphthous syndrome and enamel defects, unexplained ataxia, peripheral neuropathy, delayed menarche or premature menopause, Down syndrome, Turner syndrome, Williams syndrome, chronic fatigue syndrome, IgA nephropathy, and IgA deficiency. CeD serology should be the initial step in the screening process. However, for patients with any of the aforementioned disorders who are undergoing upper endoscopy, biopsies should be performed to rule out CeD.

Keywords: associated conditions; celiac disease; comorbidity; gluten; screening; testing.

Full text at: https://www.gastrojournal.org/article/S0016-5085(24)00282-8/pdf

 

[ME/CFS Skeptic]

This is their section on CFS:

Chronic fatigue
Chronic fatigue syndrome is characterized by an overwhelming sense of tiredness, lack of energy, and persistent and prolonged exhaustion, even after rest119. This syndrome is associated with systemic immune activation and has been frequently reported in CeD120. Previous evidence indicated a prevalence of 2-3% of CeD in individuals who present with chronic fatigue121. Clinical research in this field encounters challenges because of the scarcity of published studies, small sample sizes, diverse study designs, and the use of unspecified instruments for chronic fatigue measurement. Additionally, clinical factors such as depression and anemia can act as confounders. A recent literature review suggests that the prevalence of chronic fatigue varies significantly at CeD diagnosis and that treatment with a GFD may have a positive impact. However, there are little data to confirm that GFD improves symptoms in patients with CeD122. The current guidelines 22, 23 suggest CeD screening in patients with chronic fatigue. Nonetheless, additional research is needed

Reference 121 is:
Skowera A, Peakman M, Cleare A, et al. High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome. Journal of clinical pathology 2001;54:335-336

 

[Hutan]

However, there are little data to confirm that GFD improves symptoms in patients with CeD 122.

I assume there's a typo in the abstract - they mean 'little data to confirm that a gluten free diet improves symptoms in patients with CFS'. (not Celiac disease)

The most effective strategy for identifying undiagnosed CeD is proactive case-finding through serologic testing in high-risk groups.

The current guidelines 22, 23 suggest CeD screening in patients with chronic fatigue.

Useful, thanks ME/CFS Skeptic

 

[Peter T]

First I have a conflict of interest to declare in that I most likely have an acquired non coeliac gluten intolerance, though I can not be certain as I was already on a gluten free diet when tested for coeliac which I did not realise at the time invalidates the test and makes a false negative much more likely. When I did find this out the cost of reintroducing gluten to my diet to repeat the test did not seem worth the benefit of a more accurate differential diagnosis when both have the broadly similarmanagement. (Note a gluten intolerances is not necessarily fixed and for some may resolve, also coeliac disease is more like an allergy where even trace amounts of gluten can trigger adverse responses so more careful management may be required.)

It is not clear that the authors of this piece fully understand the distinction between the symptom of chronic fatigue and the condition ME/CFS, though this confusion is not helped by their outdated use of the term CFS. Chronic fatigue can be a symptom of coeliac which is one of the areas of overlap where it is also a major symptom ME/CFS though not as presented here the defining symptom. Obviously there is no necessary reason why people with coeliac may not also develop ME/CFS but, as far as I am aware, we lack any reliable data on the incidence ME/CFS in coeliac or the incidence of coeliac in people with ME/CFS. Some authors do suggest high levels of allergies in ME/CFS but I remain unconvinced they have fully differentiated between allergies and acquired sensitivities/intolerances. Personally I suspect the incidence of coeliac in ME/CFS will be near or only slightly higher than that in the general population.

In contrast we see significantly higher levels of food intolerances in ME/CFS. The published studies are not fantastic in their sample selections and the published results consequently show a lot of variation, but it is likely that somewhere between 30% and 50% of people with ME/CFS also have an acquired gluten intolerance, though higher levels have also been reported.

My response to gluten overlaps with my ME symptoms and, given a twenty four hour delay to symptoms emerging in response to eating any gluten when gluten free, it is hard to distinguish between gluten triggered symptoms and exertion triggered PEM. Also I am never sure whether to look on my gluten intolerance as a distinct condition or as a symptom of my ME. It is likely my gluten related issue began simultaneously with my ME though it took several years to identify. Further they seemed to worsen as my ME has deteriorated, for example when I first identified issues I could get away with rye bread which has I think a different form of gluten to wheat flour, but now any thing with gluten causes problems. Also it is more marked when in PEM.

I would argue that every one with ME/CFS should be advised about potential food intolerances as part of the information they are given following diagnosis (what information you ask) as well as the risks of PEM, sensory issues, orthostatic issues and the need for pacing. It is particularly important if people with ME/CFS are to understand and manage the variation in their symptoms they are informed about the various contributory/trigger factors. My personal experience was the lack of any basic information on these issue meant it was some 15 years into my condition before I could begin to manage it in any way.

However, personally I think people with a confirmed ME/CFS diagnosis only need to be tested for coeliac disease if there is reason to suspect gluten issues. Though I understand ruling out coeliac may be necessary in people presenting with undiagnosed chronic fatigue.

 

[Peter T]

I tend to comment before reading fully, and have only just looked at the reference pulled out by @ME/CFS Skeptic above

Skowera A, Peakman M, Cleare A, et al. High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome. Journal of clinical pathology 2001;54:335-336

Abstract

There has been recent interest in the possibility that undiagnosed coeliac disease (CD) might be the cause of diverse clinical symptoms, most particularly “tired all the time”.1 A recent study reported a prevalence of three in 100 cases in a primary care environment in which samples were taken from patients with a range of symptoms and signs.2 The second most frequent symptom reported by the endomysial antibody (EMA) positive patients was “being tired all the time”. We decided to examine the prevalence of EMA in patients attending our tertiary referral centre with the diagnosis of chronic fatigue syndrome (CFS). We tested serum from 100 consecutive patients (47 men, 53 women; median age, 40 years; range, 18–57) referred to …

https://www.semanticscholar.org/pap...kman/10cb1e873d0c196c7531b9844de383c9ab9bf14c

This 2001 letter, co authored by our old friend Simon Wessely, is unfortunately behind a pay wall, but on the basis of the abstract along with the authors and the date of publication I would want more information on the sample before assuming the people they diagnose as having chronic fatigue syndrome would a hundred percent overlap with what we today understand as ME/CFS.

[added - have found a copy of the full text accessible on line (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1731400/pdf/v054p00335a.pdf ) which includes “Two of the 100 CFS samples were positive for EMA using IF, and this was confirmed by ELISA, but none of the 100 control samples was positive. None of the subjects had selec- tive IgA deficiency. Mean (SD) serum IgA concentrations among patients with CFS were 2.1 g/litre (0.98). Neither of the positive cases, both women aged 27 and 54, had reported symptoms typical of CD, although one had a history of constipation. Routine blood tests including serum proteins and full blood count were normal, and both had been seen by consultant physicians before referral. Both had histories of hypothyroidism, were taking long term thyroxine, and were cur- rently euthyroid. Before the diagnosis of CD was made retrospectively, both had received cognitive behaviour therapy (CBT), a stand- ard treatment for CFS. In both cases, CBT led to a substantial improvement in the qual- ity of life and physical activity, but neither patient was symptom free at the end of treat- ment or at six months follow up. In both cases, CD was subsequently confirmed on jejunal biopsy after the retrospective identification.
… … …
We now extend that observation to our CFS clinic. Indeed, given our prevalence of 2%, and the fact that there is a treatment for CD, we now suggest that screening for CD should be added to the relatively short list of mandatory investigations in suspected cases of CFS.” ]

 

[MeSci]

In case anyone wants to read another thread on gluten and ME, try this:

https://www.s4me.info/threads/marke...ic-fatigue-syndrome-2018-alaedini-et-al.3167/