Food allergies

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    Community Voices

    I’m new here!

    Hi, my name is andrea85_newyork. I'm here because I’ve been battling chronic fatigue for 3 years. I have recurring anemia, IBS, food allergies, insomnia, back pain and rosacea. I’m trying to find people who’d be willing to chat about what’s worked or hasn’t worked for them —- and general just speak to someone who understands what I’m going through :)

    #MightyTogether

    2 people are talking about this
    Community Voices

    My Story

    Hello! My name is Sarisha and I’m 19. I’ve had health issues since I was born. I have several severe food allergies, asthma, eczema, ADHD, depression and anxiety. For over a year, I’ve been struggling with an undiagnosed neurological issue. I’m in constant pain and I’m always tired. My body has been weakened so much and none of my tests are showing anything. I’ve been going from specialist to specialist and I’m doing more tests that lead no where. Most recently, I think I’ve started having seizures but I don’t know for sure and neither do my doctors so I’m just anxious and scared all the time.
    #Depression #Anxiety #ChronicIllness #Undiagnosed #healthissues

    4 people are talking about this
    Community Voices

    Going for an EDS Diagnosis

    Hey all, I hope this is allowed (I don't think I saw anything in rules to say it isn't), but I was looking to get some thoughts on what I think may be EDS (perhaps hEDS) and my next steps.

    This post will probably be pretty long, so I apologise in advance for that.

    So, I was diagnosed with Fibromyalgia about three years ago. The GP also thought I could have ME. Generally speaking, I have been in constant widespread (joint and nerve) pain for the past 15 years, but every few years I seem to deteriorate further.

    I haven't experienced dislocations, but perhaps subluxations. I honestly am not entirely sure, though I feel like I should be. My joints are extremely tender, get worse with movement, and I click frequently (which seems to also cause pain).

    I don't have stretchy skin and I'm overweight. Basically, what I'm saying is that I don't believe I will be listened to by doctors because I don't fit the generalised view of EDS.

    I also didn't think I have EDS (a few of my friends do) until people started mentioning the possibility to me. After having done a lot of reading, I'm starting to see it might fit, but I've experienced so much invalidation, weight shaming, and placing blame on my mental illness from so many GPs now that I'm scared to seek help. As such, I've decided to raid the little house deposit savings I have and seek a private diagnosis, in the hopes I can be referred back to the NHS for treatment.

    So, I guess what I'm looking for from the group, if possible, is some thoughts on whether you think my symptoms align with a diagnosis of EDS. I'll list what the worst ones are for me below:

    Injuries: last year, I herniated my disc from simply turning around on the sofa. I've been in constant pain since and am due to see orthopedics next week.

    Bladder Control: a year or so ago, after experiencing bladder issues for years, I lost a lot of my bladder control. I need to pee every few minutes, though when I try, it often takes a long time to actually be able to, and I've had to wear pads now for months due to a lot leaking. Sorry if this was TMI!

    Possible Subluxation: a bone recently popped out in my wrist and has been painful and tender for about a month. I've been too scared to go to the GP. I eventually tried pushing it back in myself and it seems to have shifted somewhat, but isn't exactly as it should be or was before.

    Digestion Issues: I've long believed I have GERD (silent acid reflux), but only recently discovered those with EDS often have digestive issues. I had a really bad episode, lasting six months two years ago, but it dissappeared with only a few symptoms remaining. I am currently going through two months of not being able to eat (or even drink water) without belching, dizziness, bloating, gasping for breath, heart palpations, etc. I'm so, so uncomfortable and scared to eat. I've been told by friends who have it that this also sounds like POTS (I also experience a lot of dizziness upon standing) and MCAS.

    Food Allergies or Intolerance: this one has been with me since I was a child, but the foods I can eat without symptoms are becoming less and less. I recently discovered soya is a big no-no, feta recently made my mouth swell up after years of tolerating it. The list goes on.

    Mobility: honestly, this is where I tend to gaslight myself because I'm overweight, but I know other overweight people who don't live like this, so I'm trying to be kinder to myself and validate what must be something physical. So, I try to walk from the car to work (I am a jewellery maker and have my own studio, so can luckily work to my own pace). The walk is roughly ten minutes, but it is enough to cause a flare-up for the rest of the day. That said, walking is infinitely less painful than standing. Even before my back injury, I have long (maybe the past 10-15 years) experienced severe pain in my lower back when standing. The only thing I've found to help with this is if I sway gently from side to side. The gentle movement seems to help me stand for a little longer, but it's still agony.

    Issues Sitting: I don't know if this is anything to do with EDS, but I have been unable to sit upright on a sofa or most chairs for longer than a few minutes without experiencing severe pain in my lower back and legs. I often cry because I want to sit up, but I always, always have to resort to lying down.

    Joint Pain: All my joints seem to hurt, but the worst is, by far, my hips. As a side sleeper, I find it terribly painful to try to sleep at night. It feels like I'm lying on a brick! Ive also had an extremely tender ribcage for the past two-three years, so much so that now my partner can't cuddle me without excruciating pain and pressure.

    Weakness: again, I'm unsure if this is related to EDS, but I haven't been able to hold a book for about ten years, maybe longer, because I physically cannot bare the pressure it puts on my wrists, the weakness it causes in my arms, and the pain it causes in my neck and shoulders. As such, I read, lying down, with a Kindle. It's the only way it's manageable.

    Uff, I'm so, so sorry! I know this has been an essay! I just wanted to provide as much information as possible in order to get some feedback.

    Looking at the EDS diagnosis, I'm pretty uncertain if I have it (some questions I don't understand, others I don't have answers for), but reading about EDS in forums, talking to friends with it - that's when I start to think... this could be it.

    I guess I'm wondering if I'd be wasting time and money to see a specialist when this might all be something else.

    Thanks so much for reading. ❤️ #EDS #EhlersDanlosSyndrome #HypermobileTypeEDS #ChronicIllness

    7 people are talking about this
    Community Voices

    Would you do OIT as an adult?

    <p>Would you do OIT as an adult?</p>
    Community Voices

    Allium #Allergy

    I am here to moan and not rub my eyes or scratch. A few years ago, I developed an allergy to onions and garlic. A neighbour has recently developed Alium Love and cant' stop cooking onions. The allergens seem to be getting into my flat through those vents old buildings have. It smells lovely until I can't breathe, rub my eyes raw and claw myself. I took an antihistamine as soon as the smell registered. Is there a place on the planet where my allergies will not be a problem? #FoodAllergies #neighbours

    Community Voices

    Dealing with food cravings + the temptation of takeout

    I caved after work today and got a donair. Within ten minutes, the intense stomach pain hit and I am still dealing with discomfort, pain, and bloating six hours later, to the extent that I can't get to sleep.

    I really struggle with consistently maintaining a diet that helps me feel good for a few reasons:

    1) The constant, insistent message from my parents when I was growing up that if a food item is "good for you," then you should always eat it. Right now, food items that are certainly healthy like broccoli, chickpeas, and olive oil are actually *not* good for me and it is hard to shut off that voice in my head from my childhood.

    2) After living in a number of different countries and traveling to dozens more, I have developed a love for world cuisine. Due to dietary limitations, I simply can't cook a lot of those dishes for myself, but sometimes, when I'm having a bad day, all I want is a bite of one of those delicious meals that transports me back to a better time. So I order take out. And then I have an experience like with the donair.

    I guess this post is about the varied meanings of nourishment for different people. I am still trying to develop a healthy concept of nourishment for myself, and I am grateful for this group.

    #Food #FoodAllergies #foodintolerance #Healthy #goodforyou #MentalHealth #Nourishment

    3 people are talking about this
    Community Voices

    How do you make food when you're in too much pain to cook?

    Due to my current health crisis I'm unable to cook as much as I normally would. The soles of my feet throb in pain. So that's leaving me searching for pre packaged food. Other than most pre packaged foods being unhealthy I'm allergic to dairy and I'm gluten intolerant. Plus I have high cholesterol so I'm very careful about the saturated fat. Trying to find gluten free, dairy free, low saturated fat pre packaged food is quite the challenge. I've checked out Hungry Root but it is rather expensive. So any ideas of what I can do?

    #ChronicPain #Cooking #FoodAllergies #HighCholesterol #Anxiety

    7 people are talking about this
    Monika Sudakov

    Why Chefs Should Gladly Accommodate Food Allergies and Restrictions

    One of the commitments I made early on in my career as a chef was to accommodate dietary restrictions of any kind at my restaurant and bed and breakfast. I had first-hand experience with how challenging and demoralizing it could be to be affected by a food allergy when my mother-in-law was diagnosed with celiac disease in 1997. While her symptoms were finally being managed and she felt a thousand percent better, she lost something that many take for granted — the ability to safely enjoy a meal at a restaurant. Far too often, restaurants either didn’t have a gluten-free menu, or if they did, they were not well versed in the nuances and serious ramifications involving cross-contamination. That broke my heart and lit a fire within me to become a kind of safe haven for anyone that wants to enjoy fine dining without worrying about getting sick. I extended my knowledge on accommodating dietary restrictions by becoming a master at reading food labels, researching substitutions for everything from thickeners in sauces to leaveners in baked goods, and committing to making everything in-house from scratch to order. I recognize that this is a luxury most chefs and restaurants don’t have, but because we were a small operation and I was the only person in the kitchen, I was confident that I could implement safety protocols to ensure that no cross-contamination occurred. As the years went on, more and more dietary restrictions emerged. I started getting requests for every permutation of allergies and protocols from things like Paleo and Keto to Low Fodmap and AIP Protocol. Awareness of how chronic illness could be managed through diet skyrocketed, and with it a host of unique combinations of foods that people could and could not eat. I’m a naturally inquisitive person, so I took to researching each request completely, not just to understand what they are in terms of foods I could and could not use to create menus, but more importantly, what symptoms the protocols were designed to address. Guests are often surprised when I ask details like “Are you gluten intolerant, have celiac disease, or a wheat allergy?” or “Are you lactose intolerant, casein intolerant, or do you have a dairy allergy?” And I always tell them that not only is it not a problem, I genuinely enjoy accommodating dietary restrictions. In fact, the more complex, the more I enjoy it. For me, it’s like a creative exercise, an opportunity to play with flavors and ingredients and combine them in unique ways. But what I love the most is the genuine joy in my guests’ faces when they are eating out for the first time in ages and not only do they not have to worry about getting sick, they can finally relax and fully experience the company of others. It’s an almost symbiotic intimate connection that we can make through the act of making and eating food, and it’s incredibly fulfilling. This is why I get perturbed and dismayed with restaurants and chefs who refuse to compromise their vision to accommodate dietary restrictions. Many think that their creation will suffer if they leave anything out, or they have a sense that a lot of people are just making their allergies up. And don’t get me going on the level of antagonistic discourse I hear regarding requests for vegan or vegetarian options. Frankly, it’s self-centered and judgmental, and it dehumanizes others who whether by choice or necessity cannot or will not consume something. And it is the antithesis of what hospitality means. Let me be clear, eating delicious food in community with others is a fundamental human right. I absolutely believe that it is not just one of the greatest pleasures in life, but that it fosters the kind of meaningful connection that enables humanity to thrive. Denying anyone that right because of what they can or cannot eat is cruel. For anyone living with food allergies or dietary restrictions of any kind for any reason by choice or necessity, I have a simple message for you: never once feel shame or guilt or like you are an inconvenience for asking to get your needs met. You deserve the dignity of enjoying food safely, respectfully, and lovingly prepared for you. It’s my ultimate honor and privilege as a chef to feed your body and soul and to remind you that you are uniquely special and that you matter.

    9 Things Not to Feel Guilty About Doing When You Have Allergies

    I grew up having allergies. I was allergic to many foods and environmental things as a kid, but when I got a bit older, my allergies seemed to go away. About a year ago, I went to an allergist complaining of rashes and stomach problems. I left learning that I was allergic to over 30 types of food and almost 40 types of environmental allergies. I had to cut over 30 types of food out of my diet including dairy, wheat, tomatoes, and eggs. It was hard at first. I felt a lot of guilt when it came to having my new allergies. I would end up not eating at people’s houses and I wouldn’t double-check food labels for fear that people would be annoyed. I even would let people convince me that if I ate just a little bit of something I was allergic to, I would be fine. I didn’t want people to be inconvenienced by my allergies. In return, my allergies continued to get worse. After a couple of months of a back and forth of feeling great when I didn’t have foods I was allergic to and then having something and getting sick, I realized I needed to stop feeling guilty. I couldn’t help that I had allergies and if I wanted to start feeling better, I had to stop worrying about how others reacted to my allergies. Here are nine things not to feel guilty about when you have allergies. 1. Having an allergic reaction. Allergic reactions can vary between mild to severe and life-threatening. It’s nothing to be embarrassed about or feel guilty for if it happens. It can be hard at first if you are just learning what you are allergic to and mistakes can happen. Make sure to take care of yourself and keep an epi-pen with you, if needed. 2. Bringing your own food to social events because of your food allergies. In social gatherings, it can be hard to know if the food that will be provided is allergy-safe. It is also difficult to ask people what is in each dish, especially if you have more than one allergy. Never feel guilty about bringing your own food to social gatherings. I usually inform the host and tell them not to worry about me and I have my own food. 3. Ordering allergy-safe substitutions. Don’t feel guilty about ordering substitutions when you go out to eat. Most chefs are willing to help provide allergy-safe substitutions. Fast-food places are now providing more allergy-friendly food and substitutions. Remember, you are paying for a meal and it’s important that you can enjoy it without worrying about a reaction. 4. Double-checking nutrition info on food labels to make sure they are allergy-safe. Double-checking food labels is important when you have an allergy. However, it can seem rude to some. You don’t need to feel guilty or let others make you feel that way. 5. Saying no when people tell you, “A little bit won’t hurt.” One of the hardest things about having allergies is when someone is offering you food that you are allergic to and they tell you, “A little bit won’t hurt.” No one knows your body but you. They don’t experience gut problems, allergic reactions, or any of the complications from eating something you are allergic to. Even if you are just “a little” allergic, it’s OK to tell people no. And you don’t have to tell them how the food affects you. Telling them you are allergic is enough. 6. Spending more money on food that is allergy safe. It sucks that eating allergy-safe food can be more expensive. It can feel like your budget is being sucked into food. It can be even more frustrating being charged more for food when dining out, especially when someone else is buying the food. Know that you are not responsible nor are you in control of making the price for food or your allergies. 7. Eating a different meal than everyone else because of food allergies. Sometimes we feel like we are inconveniencing others when we make special food for ourselves or order at a different place than what others are having. But don’t feel guilty advocating for yourself and making yourself different food. 8. Asking people not to wear strong scents that trigger your allergies. Strong scents can be very harmful to some people with allergies. It can feel awkward asking people to not spray or wear strong scents around you. However, I’m sure others will also be thankful for not having to smell a strong perfume or cologne as they can also trigger headaches and migraines for many people. 9. Turning down side dishes/snacks people brought “just for you.” Sometimes people will try to make special meals or offer snacks, however, if you aren’t sure what is in the meal it can be hard to accept the food. I usually tell them that while I’m mainly allergic to dairy and wheat, I’m also allergic to many other things, which can be hard if you aren’t able to double-check the ingredients yourself. It’s OK to turn down food that others make for you. Do you ever feel guilty for having allergies? How do you respond to those who make you feel guilty?

    Brina Patel

    The Emotional Toll of Chronic Illness-Related Dietary Restrictions

    Like many, food had never solely been a form of sustenance for me. No, no… It was an integral part of my cultural identity. A source of solace at the end of a long day. An excuse to meet up with friends when I knew I should be studying for a midterm. I refer to this in the past tense because my relationship with food has changed since chronic illness entered my life. For the past three years, I’ve lived with a mysterious gastrointestinal motility disorder. And last year, I was diagnosed with an esophageal stricture. Essentially, my stomach and esophagus don’t move food through my system as they ought to, making eating a painful and anxiety-ridden act. Prior to my illness, my relationship with food wasn’t the healthiest. While I’d never been diagnosed with an eating disorder, I did have obsessive tendencies, swinging like a trapeze artist from one diet to the next. I went through cycles of bingeing and restricting. But the thing was, I always felt a sense of control. Food was at my mercy, not the other way around. Until my gut shut down. Suddenly, food was dangerous — it had the power to physically hurt me. To render me supine for hours at a time, heating pad pressed against my chest. When I eat certain foods, I never know if they’ll get stuck in my throat or lead to a frustrating bout of indigestion. The types and textures of food I can tolerate have dwindled. Most of my meals are in pureed form, and the solid foods I can eat are softer, like sweet potatoes and nut butters. As someone who comes from a Gujarati American family, in which food is its own love language, this has proved an adjustment to say the very least. The social side of my health situation has borne a heavy load of challenges. Whereas invites to dinner with friends were once an exciting prospect, they now spur me into overthinking. And though I’ve been blessed with support, nothing prepared me for the onslaught of insensitive statements. I’ve been accused of having an eating disorder. Several specialists have sifted through my medical records, then insisted antidepressants were the antidote to my ailments. A guy I dated told me I should be glad because many women would love to have a body that was unable to eat more. (Shocker — we didn’t last long.) It can be difficult to detach from the emotional pain that arises from dietary restrictions. On the one hand, you know that, from a rational standpoint, you’re doing what’s best for your body. But on the other, you watch your loved ones consume glutenous, dairy-laden delicacies as you’re eating pureed food for the umpteenth meal. There’s no denying how isolating that feels. And let’s be real. We live on a food-centric planet. TV advertisements, aromas at the grocery store, sounds of sizzling sausages — these sensory inputs are tough to escape. And the evolutionary hardwiring even more so. From the beginning of time, our species has used food to bond. Recipes are passed down from generation to generation, a sentimental form of keeping our traditions alive. Science has even shown that when we share meals with others, we feel happier and more connected. Unlike regimented healing protocol, there’s no roadmap for navigating the emotions that arise during chronic illnesses. The line between doing what’s best for your mental versus physical health can be porous. Do I eat this food I’m craving even though I know it’ll leave me doubled over afterward? Should I eat a meal even though I have zero appetite? Therapy has been a major source of understanding my attitudes around food. It’s allowed me to examine the detrimental narratives I’d been feeding myself (pun not intended). It’s shown me to lean into my body’s cues, to be patient with it. A lot of the work involves digging into my own internal landscape, like an excavator searching for fossils of faulty belief systems wired into my brain. I know I’m hardly the only one with a distorted relationship to food because of chronic illness. Those with food allergies must remain vigilant to avoid anaphylactic shock. Individuals with IBD and IBS have their own gastrointestinal and bathroom-related repercussions. Even people with other chronic illnesses reduce or restrict foods to keep symptoms at bay. The biggest thing we can do is show ourselves compassion. Accept where we are in our journeys. And understand that there are other ways to derive joy, connection, and a sense of meaning in this world that don’t center around food. For so long I felt alone, resentful, scared, and mournful. But I know the catalyst for change comes from sharing my story. Hopefully, psychological studies will look deeper into this phenomenon and there will be a greater dialogue. Wherever your relationship is with food, know that your feelings are valid and worthy of acknowledgment.