Being Too Vigilant About Gluten-Free Diet Causes Stress in Teens and Adults with Celiac Disease

[Scott Adams]

It's very important that people with celiac disease maintain a gluten-free diet. Still, there has been some data to suggest that some people with celiac disease may be "hyper vigilant" in their approach to a gluten-free diet, and that such extreme vigilance can cause them stress and reduce their overall quality of life. Can a more relaxed approach improve quality of life for some people with the disease?

A team of researchers recently set out to determine whether "extreme vigilance" to a strict gluten-free diet may increase symptoms such as anxiety and fatigue, and therefore, lower quality of life (QOL).

View the full article

[Sienna2013]

The coverage of this study irritated me (to be fair, I haven't read the underlying study itself) because from the news articles, it is not possible to tell whether the extreme vigilance is just individual variation in how seriously people take the gluten-free diet (IOW: "wow, some celiacs sure are neurotic, they're making themselves crazy!"), or a completely reasonable and learned response due to variable sensitivity to gluten. 

In other words: my belief is that if you are very sensitive to gluten, then yes of course, you will be extremely vigilant, and probably your QOL will suffer as a result. If you are less sensitive (or less symptomatic), then your trigger threshold is higher and you will experience reduced / lower intensity / less frequent symptoms, so consequently, you both (a) have a higher QOL in general, and (b) can afford to be less vigilant. But from the study, it sounds like "hey, if you take it too seriously, you'll drive yourself nuts", with the implied conclusion that the stricter celiacs should maybe just chill — that's just so wrong! 

I've read *many* of the studies about celiac and anxiety (my 2 kids were diagnosed with celiac disease last year, one of them (kid1) with super severe anxiety, and we are seeing how staying gluten-free is helping her slowly improve, particularly combined with supplementing vit D, magnesium, and probiotic in the form of kombucha).  I am unimpressed with the poor analytical approach I've seen in some of them, which tend to amount to "OMG, having celiac disease and trying to follow a gluten-free diet is stressful."

When is a research team going to try to disaggregate, and study/document, the different types of anxiety and depression involved in having a celiac diagnosis? I count at least three:

- inherent anxiety caused by systemic inflammation, gut damage, and malabsorption (i.e., individual just has a low hum of anxiety going all the time, like their anxiety thermostat is set unusually high - this is part of kid1's issue)

- the  (quite reasonable) risk-averse practical anxiety that comes with following a gluten-free diet and trying to avoid getting glutened in a gluten-filled world (this affects kid2 more than kid1, who tends to live in denial on this point a little bit)

- general social/hassle - the anxiety and additional emotional burden that comes with trying to live a normal social, family, and business life while having a significant food-based restriction (this one bothers kid1 (and me, as the parent) more, since apparently pizza is the default celebration food so every birthday party is an occasion for tears and negotiation over what her substitute meal will be (kid1 has champagne tastes, so just saying "frozen gluten-free pizza we bring from home" doesn't satisfy her - she wants something so awesome that not only won't she feel left out, but the other kids might envy her a little bit - which I can understand, and actuallyy support in the day-to-day lunch context, but not at someone's birthday party). 

Curious what others think about this. Maybe we should write some celiac centers with proposals. 

[Lovebucket]

I find that If I am not very vigilant about what I eat, It HAS to gave a gluten-free label and made in a facility that doesn't process wheat or milk (allergic to milk), I get really sick, and it further raises my anxiety about eating anything, even an apple. I no longer eat at restaurants unless the entire place is gluten-free, but I don't talk about it, I just have a glass of wine and chat. It seems like it gives everyone else anxiety the more I talk about it, not me. My quality of life has gone up significantly, because I am more vigilant about my needs. I think the key is to not feel bad about it, don't let others press you into eating at a restaurant, a potluck, or even your family's cooking. I offer to make the food myself, I bring ingredients and treat them to a home cooked meal, as a bonus I don"t get sick because they mindlessly used butter or a contaminated knife. I firmly believe that the comments and judgments from others is what fuels the majority of anxiety some of us feel. Maybe if people stopped thinking we are fad dieters it would be easier, maybe if people stopped purposely spiking our food to "see what happens" things wouldn't be so stressful. 

[Gemini]

I think the anxiety and stress from being sick for years and not getting help from the AMA totally trumps whatever happens after going gluten free.  I have been gluten-free for 13 years this Easter and I have zero anxiety and stress with regards to this lifestyle.  I am very sensitive and strict with my diet but have adapted well and am really enjoying much better health than in my younger years.  I have learned the diet well and eat out carefully but keep that to a minimum. There are many benefits to eating healthier as a whole so I wouldn't give any of it up for anything.  With Celiac, attitude and acceptance are everything.

As to what others think and say, I could care less.  I've had family members insult me and make fun of how careful I am but they don't anymore.  More people in my family are falling like duckpins and being diagnosed when they could no longer control their symptoms or live in denial.  They aren't laughing anymore! 

[Jmg]

Whilst being too vigilant about the gluten free diet may  cause me stress and anxiety, eating gluten is proven to do so.  Over time I can get better at handling the stresses around following the diet, I have no comparable means of dealing with gluten induced depression, anxiety and brain fog (and the rest of it) other than avoiding provoking it in the first place. Therefore there's a very simple cost / benefit trade off for me in favour of being vigilant. Although I accept that there's a need to balance the discipline of the diet with the benefits of going out into the world and not allowing this condition to stop me enjoying life.