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Dietary Restrictions and Disordered Eating: What You Need To Know

Last updated: December 2022

Author's note: This article discusses eating disorders and weight loss with a mention of pounds lost in relation to height. If you are struggling with an eating disorder, this article may be triggering for you.

Identifying food triggers is both a blessing and a curse. For one, it is nice to know what steps to take to avoid a flare-up. On the other hand, the fear trigger foods can cause and the act of having to eat a restrictive diet can lead you down a very rocky road. I wanted to share my story in the hopes that hearing what I went through can lead you down a healthier path.

There wasn't a lot of information available about HS

When I was first diagnosed, there weren’t a lot of online support groups or information. Pinterest didn’t exist, and the types of diets we hear about so often today (Keto, Paleo, even Veganism) weren’t as rampantly discussed or available. Even my own doctors at that point didn’t relate certain foods to the possibility of flares.

Over the past few years, a lot more studies have been done and research has been released, and support groups are readily available online where people share their trials and tribulations as well as what has worked for them. When my dietician first suggested that I eliminate gluten from my diet to try and manage my HS, I was at a point with my flares that I would have stood on my head and sang Ave Maria backward every day if you had told me it would help! And so, I cut gluten right from that very moment.

Looking for potential HS triggers

Having been a vegetarian since the age of 11, eating a slightly restrictive diet wasn’t anything new to me, but when I eliminated gluten and saw almost immediate results, I started looking for other possible food triggers. Within 3 months after some internet research, and against the recommendation of my dietician who wanted me to take things much slower than I did, I had eliminated dairy, sugar and artificial sweeteners, caffeine, any gluten-free bread substitutes, yeast, alcohol, acidic vegetables, and nightshades. I had also adopted a low glycemic index diet, limiting the fruits and carbs I ate as well. I gave up so many things that I had a list of 8 meals and no snacks that I ate in rotation.

While all of this didn’t completely stop my HS flares (and in fact only made a minimal difference), I convinced myself that freedom was right around the corner if I could just be stricter with my diet and myself. When I came across articles linking weight gain or ‘being overweight’ to an increase in flares, I vowed to lose weight again, against the recommendation of my medical team. I started to work out for an hour a day, not caring about the short-term damage it caused with my HS because I was again convinced if I could just be stricter, be BETTER, I could beat HS in the long run.

That is when the fear of food set in.

My fear of food

I couldn’t try new foods because I was worried about a flare. I couldn’t even try new preparations of familiar foods because I was convinced it would make me sick. I wouldn’t eat anything frozen, fried, prepackaged, or ordered from a restaurant. I couldn’t let other people cook for me because I was convinced they would somehow add gluten or nightshades to my food. On my birthday, everyone else ate cupcakes while I had a melon salad.

Before I started my restrictive diet, I was 5'3" and 120 pounds. Within 6 months, I was 113 pounds, anemic, and officially diagnosed as malnourished. My nails were peeling, my hair was falling out, my skin was flaking, I couldn’t sleep. When my dietician saw me again for our regular 6-month check-in, she literally gasped out loud and covered her mouth with her hands in shock. She immediately called my GP and demanded she ordered bloodwork, which is how I was diagnosed as anemic and malnourished. I had to follow up with my GP who also was completely shocked at the decline in my health. She diagnosed me with EDNOS - Eating Disorder Not Otherwise Specified. This means that I did not have Anorexia or Bulimia but still clearly had an eating disorder. The worst part? My HS was just as bad as it had been when I had only cut gluten from my diet - there was no improvement! My health was at a total rock bottom, and I needed serious help.

Read Part 2 where I discuss how I overcame my restrictive eating while still keeping my trigger foods in check.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HSDisease.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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