Updated: Aug 11
*Trigger Warning* this blog post mentions and discusses eating disorders.
With the holidays approaching, I wanted to open up a conversation about food fear that can be associated with dietary restrictions for different chronic illnesses.
I talk to a lot of people in the interstitial cystitis (IC) community, and the majority of people I chat with disclose to me that they are afraid or even terrified of eating. I actually conducted a survey this week in a private Facebook support group that asked, "Are you afraid of eating out of fear of causing a flare?". 32% of the 61 people who responded answered "yes", 54% answered "maybe" and "13% answered "no". That's a combined 86% that are either always or sometimes afraid to eat.
Many people have been eating the same 10 foods for an extended period of time out of fear of causing a flare. Logically, this makes complete sense! But as a Registered Dietitian (RD), having someone tell me this triggers alarms in my brain, because following a restrictive diet can be dangerous.
Eating a restrictive diet can take both a physical toll as well as an emotional one. A huge concern is the risk of causing nutrient deficiencies. We are all human and our bodies need variety in what we put in them.
The human body needs macronutrients (think carbs, protein and fat) and micronutrients (think vitamins and minerals) to have consistent energy and stay healthy. While our body can make certain nutrients (cool, right?) it still needs to get the majority of them through food.
Now that we’ve reviewed what our body needs physically, let’s talk about the mental side of things.
While most of my clients or people I’ve simply chatted through social media with implemented restrictive diets with the best of intentions (to alleviate uncomfortable and painful symptoms), I have noticed that many harbor significant anxiety around eating and are fearful of reintroducing foods.
This is not a healthy behavior, especially in the long term. I truly believe this is a result of poor communication upon diagnosis of IC.
Think back to when you were diagnosed - what kind of information did your doctor give you? Did he or she hand you a list of foods to “avoid”? Did they explain how long you were to avoid these items? For the majority of us, the answer is “no”, they did not explain it.
When I think back to my experience, I never received any diet information, but was immediately recommended to start medications and instillations. There was no mention of first line treatment methods like diet and stress management (this could have saved me so much time, $$$, and sanity).
The thing is, we have this diet that was created over a decade ago, called the IC diet, that was created to help people with IC navigate an elimination diet. But over the years, the education just hasn’t been there between the doctor and the patient. Even if the doctor didn’t feel comfortable discussing diet, they could refer the patient to a Registered Dietitian to ensure the patient is safely conducting an elimination diet.
When someone is setting out to begin an elimination diet, there are a few things that can go wrong - check out this blog post I wrote about the common mistakes I see people make when conducting an elimination diet.
The bottom line is there needs to be better nutrition education upon diagnosis (I am working on this). This food fear mentality is NOT the patients fault - if you are a person with IC reading this - this is NOT your fault.
The IC diet was not created to be followed long-term. People are handed this diet list and truly believe that they will have to avoid these foods and beverages for the rest of their lives. This can start a grieving process. I don’t know of one culture that isn’t centered around food. I think the majority of people I talk to through social media and Discovery Calls consider themselves “foodies’ and having their favorite foods/beverages taken away from can start this grieving process.
Social events like family gatherings, getting drinks with friends, and first dates just aren’t the same. People with IC start to feel isolated from their loved ones because they can’t share in the joys of eating a food that everyone else is enjoying and talking about. Loved ones probably aren’t going to understand as much as they want to show their support.
Getting invited to a social gathering can create anxiety. A person might become nervous about what a restaurant puts in their food or if a host of a dinner party will get offended when the person tells them they aren’t able to eat a certain dish. They may worry that a first date will think they are not a suitable match because of their unique dietary restrictions - or do they even disclose their dietary restrictions on the first date? Or should they wait?? These are just a few questions that will linger in the person’s brain.
So you may be wondering, how can I break out of this food fear mentality? If the foods I was supposed to be re-introducing were the foods that triggered my symptoms in the first place, how could I possibly feel comfortable with eating them?
This is something I help people overcome in my practice. I do want to start off by saying I 100% believe everyone who can afford or has access to therapy should start. Speaking with a mental health professional will help initiate conversations about why food fear exists and how to take the first steps to overcome it.
The thing I say over and over again (I do feel like a broken record sometimes) is that every single person with IC is unique. We all have different food sensitivities and some of us have ZERO sensitivity to food. The best way to identify a food sensitivity is to conduct a elimination diet. If you can, get guidance from an RD. If you don’t have the finances or access to an RD, you can still do an elimination diet, you just need to be cautious and make sure you are still eating a balanced diet.
The most important thing: The IC diet is NOT meant to be followed long-term. You should not be restricting yourself for months (or even years) at a time. An elimination diet can be completed in as little as 3 months - think of the impact this will have on your mental health if you are able to identify any food triggers and gain your confidence back with eating.
Here’s an incredible statistic- 100% of my clients discover that they can have AT LEAST one food or beverage off the IC diet list that they did not think they would ever be able to eat again. The misconception among the community is that everyone should avoid all foods and beverages that are on the “try it” or “caution” list of the IC diet. But if you think about it, these lists are named what they are for a reason. The “try it” list contains foods and beverages that only some people with IC can tolerate (based on a study of about 100 people). The “caution” list contains the items that people in the same study believed they were most sensitive to.
Since the IC diet was created from about 100 people’s perception of what foods and beverages bothered their bladder, we need to take this information with a grain of salt. Use it to guide an elimination diet, but know that you most likely will be able to consume items that are not particularly “bladder friendly”.
The next thing I want to discuss is eating disorders. I have run into a few people with IC who had a previous eating disorder that was made worse by being recommended the IC diet and I’ve also met people who developed an eating disorder after being diagnosed with IC. If you have a history of an eating disorder, definitely make sure you have access to a mental health professional to help you during this uncharted territory. If you are reading this and think your food fear is becoming too much and you are beginning to worry, again, I would recommend reaching out to a mental health professional. If you can find one who either specializes in eating disorders or chronic illness, that’s even better.
When I am guiding my clients through an elimination diet and they tell me they are nervous to reintroduce foods and beverages, I tell them this is an understandable reaction. Your body is simply trying to protect you from something it perceives as a threat - in this case, it’s the food you are going to consume. But if we have this learned fear response, it can put you in a constant state of "fight or flight", which our bodies are not meant to be in long-term. This can trigger an inflammatory response in your body, can disrupt digestion, among many other potential consequences.
To help ease the anticipation, I like to remind my clients why they are conducting the elimination diet in the first place. The answer usually is that they miss eating the foods they love and/or want more variety in their diet to stay healthy. They may encounter roadblocks such as a short-term flare after eating a food, but this process is worth it if after 3 months they are able to eat with confidence. They will know exactly what their body can tolerate and what they need to avoid. This gives them peice of mind, which goes a very long way.
If you are reading this and are struggling with food fear, just know that there is hope. I used to not be able to consume the major triggers like coffee, alcohol, citrus, and tomatoes. I am now able to eat/drink all of these in moderation.
There are many people like me who were previously not able to consume an item and months or years later they could. There are also people who know they are sensitive to an item, but if they have a day they want to indulge in something, they take Prelief or baking soda in water in order to be able to consume an item without all of the intense symptoms that come along with it.
You will be able to get to a place where you can either consume these foods, or find work-arounds to give yourself a sense of normalcy.
If you simply cannot fathom reintroducing these "try it" or "caution" foods, give yourself grace and consider reaching out to a mental health professional for assistance.
Another thing to remember is that you are not alone. There are so many people dealing with similar thoughts and feelings, and you may even be able to communicate with them on a support group platform.
If you are looking for a qualified mental health professional, try this link. If you want to hear more about IC and ED’s, I will soon be launching the IC YOU podcast, and in the first episode I will be interviewing a woman with a history of an ED and IC.
If you are looking for guidance in conducting an elimination diet, read more about my Road To Remission program that combines an elimination diet, education, and a private support group to give you the tools you need to minimize your symptoms.
Callie Krajcir is a Registered Dietitian with Interstitial Cystitis (IC). She created Callie K Nutrition to help people with IC to minimize their symptoms through identifying their unique dietary triggers. To contact Callie, send an email to firstname.lastname@example.org