fish

Sreegouri Vangala (17 years old)

I was diagnosed with food allergies at 3 weeks old after being constantly ill and breaking out into hives. Since then, I’ve been on a strict avoidance diet, yet I continue to discover new allergies. At 4 years old, I realized I was allergic to pineapple after eating a tropical eggless cake, breaking out into hives, and having my throat close. I’ve since also learned about fish, sesame, and most recently mushroom allergies in similar ways.

It feels scary to find out about new allergies unexpectedly, especially at school or in restaurants, because you never know what you might discover. Still, I’m hopeful that things will change in the future. I have already outgrown allergies to strawberry, mango, chocolate, sunflower, and pineapple. With every allergy test, I see how far I’ve come in my journey. The main thing I’ve learned is this: never be afraid to go to the emergency room, and always use your EpiPen if you suspect a reaction. Although I’ve never had to use mine, I remember close calls where I should have erred on the side of caution. It’s always better to use your EpiPen than to be too late. Early intervention is crucial to preventing life-threatening reactions.

I’ve never used online information to diagnose myself, but I’ve looked to FARE for recommendations on allergy management and to stay up to date on food allergy news. When the FASTER Act passed and many companies started using sesame in their products, I had to be extremely vigilant about finding allergen-free food, and FARE provided helpful updates on recipe changes. Now that I’m almost a senior in high school, I’ve also used online resources to make informed choices about college — Gluten Free Friends’ survey database has been particularly useful for finding colleges that accommodate my needs, since it asks college students about their dining, housing, social life, and safety experiences. Facebook groups like the FAACT community have also been a huge help in connecting with parents and college students navigating the same search.

I only started taking advantage of the food allergy community’s resources once I entered high school, and knowing there’s a wealth of support out there means the world to me. In talking with other students and adults who have food allergies, I’m learning how to advocate for myself and be the role model I wish I’d had when I was younger.

I used Singulair and Flovent previously, and currently use Albuterol.

Olivia (>1 year old)

Olivia was a really settled baby for the first 2 weeks of her life and then all of a sudden spent weeks screaming, wouldn’t be put down, had dry rash skin, reflux and lose mucus stools that often contained blood… I thought she was just a ‘fussy’ baby as id read it was unlikely for a breastfed baby to have a milk allergy… I’d got so used to it but I soon realized there was more to it, I took her straight to the doctors and she was put on nutramigen which did not help at all (being breastfed babies are usually put straight on an amino acid based milk as they are highly sensitive due to reacting through breast milk where it’s quite broken down) so we ended up on neocate LCP and she soon became a different baby in every way! Smiling, settled and happy! Her reflux also settled! We are now weaning and so far it’s going well… we had a reaction which we believe was due to fish but I’m yet to introduce it again to check for a second reaction and we have cut out soya now just as a precaution as she’s had bad nappies but we believe they are down to teething! We hope to start the milk ladder in the future. I did a lot of research on the internet… I found out a lot of information on the NHS website but mainly through Facebook support groups about CMPA! They have been a life saver seeing other real peoples experiences as well as being able to ask similar parents/caters questions!

Payton (@The Allergy Strategy – 18+ years old)

When I was a baby, I was constantly sick anytime I would eat anything with dairy, but it was my first bite of mac and cheese that sent me into anaphylactic shock. After this, the doctors ran tests to diagnose my other, equally as severe, allergies to peanuts, eggs, fish, and shellfish. While I have not grown out of my allergies as we had hoped that I would, I would say we have overcome them mentally by changing our attitude towards my allergies. When I say “our” I mean to include my family, as I know I could not have had the full life that I have despite my food allergies without them. The road hasn’t been easy, but I have learned to see the blessing in the struggle. For one, not a day or a meal goes by that I am not grateful for the safe foods that I can eat. Secondly, my allergies have inspired me to reach out to the greater food allergy community, and have fueled my passion for helping others with severe food allergies which has inspired me to consider adding a Nutrition track as my second major, so I will be able to work as a registered dietitian specializing in helping children with severe food allergies. My greatest hope is to encourage anyone with food allergies to not let it hold them back mentally or make them feel any less than anyone else! Our differences shouldn’t be seen as a hindrance, but as a unique gift that we get to use for good if we decide to.

My allergies primarily involve avoidance of the foods, so no medication on a regular basis, however, I never leave the house without Benadryl, my inhaler, and my EpiPen. I have kept up with my allergist for skin testing and blood tests to keep tabs on the status of my allergies, so I have never had to search for information on my own based on my symptoms. I will say, though, that we are constantly researching new allergy finds and studies, and actually considered OIT, Oral Immunotherapy, as a possibility after a great deal of research a few years back! In general, FARE (Food Allergy Research and Education) is a wonderful resource for food allergy news, but there are many more up and coming resource and informational platforms that I have recently discovered such as EpiCenter and the EpiCenter app by AssureTech.