Some time ago, I hosted a Q&A session on the topic of gluten and health. This is an area that a lot of people find emotionally difficult to navigate for a variety of reasons. It’s also an area where I find many health professionals quite poorly informed on the research and not attentive enough to the clinical presentation of their clients and patients.
Demystifying Gluten
I initially entitled this piece “Everything you ever wanted to know about gluten but were afraid to ask.” But in all fairness, I could have also entitled it “Everything you ever wanted to ask about gluten but were afraid to know.”
The most common gap in knowledge I see both in health professionals and the general public is a lack of understanding of the differences between celiac disease, wheat allergy and non-celiac gluten sensitivity. Oddly enough, in the US, it’s common to hear this:
Person 1: “I’m celiac.”
Person 2: “So you’re allergic to wheat?”
In Italy, by contrast, you’ll hear this more often:
Person 1: “I’m allergic to wheat.”
Person 2: “So you’re celiac?”
As a matter of fact, celiac disease and wheat allergy are two completely different entities. Some people have both a wheat allergy and celiac disease or non-celiac gluten sensitivity. Speaking of which, let’s talk about non-celiac gluten sensitivity, which is harder to pin down. This article provides a fairly good introduction to the topic: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4476872/. However, there are certainly some instances of non-celiac gluten sensitivity that seem plausibly autoimmune in nature, so I admit that I’m not fully satisfied even with the good introduction in the article. One reason why non-celiac gluten sensitivity is kind of an unsatisfactory label to me a lot of the time is that there isn’t enough effort to uncover seronegative celiac disease, which is a condition in which the individual has celiac disease, but the antibodies are negative even when the person properly prepared for the serological testing. You can read about it here: https://pmc.ncbi.nlm.nih.gov/articles/PMC4403023/. Keep in mind that in addition to seronegative celiac disease, there is also seronegative Hashimoto’s thyroiditis and seronegative lupus, so this is not a unique issue in the world of autoimmune illness.
I’ll never forget this case study that documents a case of “gluten psychosis” in a young girl with Hashimoto’s hypothyroidism. The clinicians were so amazed by the disappearance of her psychosis after the mother implemented a gluten-free trial to address the girl’s digestive symptoms that they ran a controlled experiment in the hospital. The psychosis returned upon exposure to gluten and resolved when the gluten was removed. When gluten triggers an attack on the brain that results in psychosis, it’s a good idea to remove it from the diet. You’ll read more about this case below.
Celiac disease
A huge percentage of celiac disease gets diagnosed very late (after it’s had the chance to do a lot of damage to multiple body systems and severely dysregulated the entire immune system), if ever, because the person didn’t display the stereotypical celiac disease symptoms. It’s truly infuriating, and I consider the lack of early and proper screening of celiac disease to be a major source of iatrogenic illness.
Any sign of reduced mineral absorption should be looked at as a potential red flag for celiac disease and not filed away as “doesn’t have any symptoms” – even fatigue, depression, anxiety, psychosis, and anemia can be symptoms of celiac disease – they just aren’t what we typically think about. Also keep in mind that dermatitis herpetiformis is an autoimmune dermatological condition that affects a subset of people with celiac disease, and in some of these people, it’s the only symptom.
Severe depression and anxiety, rampant nutritional deficiencies, debilitating fatigue, migraine, unexplained severe tooth decay, random stress fractures, and more aren’t actually silent. The problem is that doctors don’t listen properly. It makes me sad and very angry at the same time, and I’m not even celiac.
Comprehensive celiac testing still isn’t considered part of the initial workup on people with chronic illness and unexplained nutritional deficiencies, and that’s baffling and unjustified.
Non-celiac gluten sensitivity
If you “don’t believe” in non-celiac gluten sensitivity, read this article and tell me what you think. This is just an interesting excerpt from a fascinating case study on an unexpected turn in the diagnosis and treatment of a young girl with symptoms of psychosis.
“In November 2013, due to gastrointestinal symptoms and further weight loss (about 15% of her weight in the last year), a nutritionist was consulted, and a gluten-free diet (GFD) was recommended for symptomatic treatment of the intestinal complaints; unexpectedly, within a week of gluten-free diet, the symptoms (both gastro-intestinal and psychiatric) dramatically improved, and the GFD was continued for four months. Despite her efforts, she occasionally experienced inadvertent gluten exposures, which triggered the recurrence of her psychotic symptoms within about four hours. Symptoms took two to three days to subside again. Then, in April 2014 (two years after the onset of symptoms), she was admitted to our pediatric gastroenterology outpatient for suspected NCGS. Previous examinations excluded a diagnosis of CD because serology for CD was negative (i.e., EMA, and tTG). A wheat allergy was excluded due to negativity of specific IgE to wheat, prick test, prick by prick and patch test for wheat resulted negative. Therefore, we decided to perform a double-blind challenge test with wheat flour and rice flour (one pill containing 4 g of wheat flour or rice flour for the first day, following two pills in the second day and 4 pills from the third day to 15 days, with seven days of wash-out between the two challenges). During the administration of rice flour, symptoms were absent. During the second day of wheat flour intake, the girl presented headache, halitosis, abdominal distension, mood disorders, fatigue, and poor concentration, and three episodes of severe hallucinations. After the challenge, she tested negative for: (1) CD serology (EMA and tTG); (2) food-specific IgE; (3) skin prick test to wheat (extract and fresh food); (4) atopy patch test to wheat; and (5) duodenal biopsy. Only serum anti-native gliadine antibodies of IgG class and stool calprotectin were elevated.”
The case study in the article is interesting because there’s a family history (mother) of autoimmune thyroiditis, which typically involves a cross-reactivity between gluten and thyroid tissue. When the 14-year-old in the case study was in utero, it’s very likely that the mother’s autoimmune response to gluten caused cross-reactivity with the developing baby’s neurological tissue as well as thyroid tissue (the girl also had elevated thyroid antibodies).
My colleagues Victoria LaFont and Hannah Wright recently recorded a very informative episode on gluten on their podcast. Check it out here.
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