Story

Katie (@Katiehollcreative – 9 years old)

March 22, 2023 / , , , , , , , ,

Our first experience with food allergies was when our oldest, now nine, had her first reaction at 6 months old at daycare. There were certainly symptoms she experienced prior that could have alerted us to food allergies, such as eczema and excessive spitting up after eating, but it was initially always diagnosed as reflux until she had formula mixed with her oatmeal. That’s when we had her tested and found out she was allergic to milk, egg, peanut, and tree nuts. Fast forward, all three of our children have multiple food allergies, some anaphylactic. Between the three, we manage milk, egg, peanut, tree nuts, and shrimp. We’ve done some oral challenges and have been able to cross some off, but each has epipens and also our oldest two have asthma.

We didn’t get a lot of information from our allergist apart from “avoid these foods” so it was a big learning curve navigating this new lifestyle. I found lots of useful information on the Food Allergy Research and Education’s (FARE) site and after a few years, found some great Facebook groups to connect and learn from others in the community. Other useful sites were FAACT and Allergic Living. I also wrote a children’s book about multiple food allergies to help educate and bring more awareness to the community in general.

Meryl (@merylottenstein1 – 18+ years old)

March 22, 2023 / , , , , , , , , , , , ,

I had a reaction to nuts when I was 2 yr’s old. I saw many doctors as back then allergies were not very common. I was tested and was allergic to peanuts and tree nuts, and tomatoes. I also have asthma and oral allergy syndrome. I was on different medications and basically made sure not to eat anything with nuts in it. As I’ve gotten older my allergies have increased and I am now ana to eggs and allergic to wheat and many additives. I make sure to read all labels and have started cooking more. It can be very anxiety provoking and I am learning to do meditation and yoga. If I am in social situations where there is food I do not eat it if I feel uncomfortable. Many people don’t understand but I have to put myself first. We need to be our own best advocates. I use Flovent, Proventil, and Singulair medications.

I use FARE for information and many Instagram accounts that provide recipes and support. I believe in research and advocacy and hope that there will be a cure soon. Many more people have allergies today and it seems that there have been a lot of good changes. Social media is very helpful as well as the apps for eating out. It’s important to find a good doctor and always pay attention to symptoms. Don’t be afraid or embarrassed to speak up about it.

Iya (8 years old)

March 22, 2023 / , , , , , , , ,

When my daughter was about 9 months, her preschool teacher called to let me know she was fussy and was tugging on her ears. I recommended some Tylenol since it sounded like an oncoming ear infection. Five minutes later she called and said my daughter’s face was swelling and they had to call 911. This obviously was very terrifying. I worked about 25 minutes away, so called my husband who worked locally to head that way. Luckily, our daughter was breathing fine. We took her to urgent care and gave her benadryl which helped with the swelling and itching. We believe she ate eggs for the first time that morning. This prompted allergy testing where we found out she was allergic to peanut, tree nuts, eggs, sesame. We later found out she has an allergy to green peas. She can now have baked egg. We think we will be able to challenge egg and sesame soon. We use epinephrine and benadryl as needed.

At first, we relied on our allergist and pediatrician for resources. When she was younger, I used relevant FB groups to see how other parents navigated certain situations. I’ve used the Food Allergy Fund and FARE as a resource.

Ellery (@wildnsun – 18+ years old)

January 26, 2023 / , , , ,

I found out about my peanut allergy at 13 months old when I had my first anaphylactic reaction. Luckily, I’m currently working on overcoming my allergy through the Tolerance Induction Program! I currently eat 18 peanuts/day successfully 🙂

I don’t know what my resources parents used because I was so young, but the Tolerance Induction Program (aka TIP) can be found at https://socalfoodallergy.org/tip/

Zoe (@invisiblyallergic – 18+ years old)

January 26, 2023 / , ,

I was first diagnosed at age of 2 confirmed to peanut. I was born with eczema and so they warned my parents I may have a food allergy and to avoid peanuts, at the age of 2 my dad unknowingly gave me a peanut butter cookie and that’s the only time I’ve eaten my life threatening allergen. I’ve avoided ever since and got official testing done as an adult where I’m off the charts to peanut and went into a anaphylaxis at the allergist to the peanut test.

We didn’t use any resources, when I was little it was the early 90s, we didn’t even have computers! Haha. There really weren’t any book or any other resources, either, at this time.

Nathan (1 year old)

January 26, 2023 / , , , , , , , , , , ,

Nathan went into anaphylactic shock after a small spoon of peanut butter when I introduced it to him at 7 months of age. He has not overcome this allergy, and since then we have discovered he is also allergic to eggs and milk (after having reactions to ingestion) and cashews and pistachios (after skin prick testing for tree nuts). All allergens were confirmed by IgE blood testing and we monitor them every 6 months.

I really didn’t know much about food allergies (including the top 9) when I started introducing foods. We have no history of food allergies in my family or my in-laws. Since his diagnosis, I have been on a mission to find as many resources as possible- through Instagram, podcasts, health care providers, and the community.

Michelle (18+ years old)

January 26, 2023 / ,

I was 6 or 7 when I ate a Ferrero Roche and started to struggle to breathe. Prior to this I had no issues with nuts. I ran to my mother, and she fixed it but I don’t remember how. After this I went to the allergist who said my allergies were off the charts.

We didn’t have access to resources back in 2001-2002.

Kristin (@Allergy_living – 18+ years old)

January 26, 2023 / , , , , , , ,

At the age of 11 after an anaphylactic reaction I learned I had a tree nut allergy. A couple of years later at the age of 13 I was constantly sick with sinus infections and GI issues. Eventually it got so bad that I was experiencing dysphagia and severe GERD. At 13 these symptoms were unknown to me and therefore hard to explain to my mom. Finally after what seemed like a never ending round of tests and then an endoscopy I learned I had Eosinophilic esophagitis. After a series of allergy tests I learned I had 13 food allergies some of which are anaphylactic. After 13 years of living with food allergies I have outgrown a few as well as developed additional food allergies. I have had 18 endoscopy/biopsies and have recently started adding additional food into my diet. I hope my personal and professional experience can help others navigate food allergies by finding fun with food again.

When first trying to understand and find resources around food allergies my mom and I used FARE as a guide. Years later and I am now a masters level registered dietitian and have used what I have learned professionally and adapted it in my own life. I share resources such as FARE, the academy of nutrition and dietetics and some allergy friendly food brands with my patients who also have food allergies.

Harper (@anaphylactic_kid – 3 years old)

January 26, 2023 / , , , , , , ,

From the moment we started introducing foods to Harper at 6 months old we had problems itchy hives rashes etc. She is our only child so we didn’t know what it was. Even thought it must be normal for babies when they eat certain foods. We got to see an allergist who tested her for eggs and sent us home with Epipens, recommended watching YouTube videos to learn how to use them. 2 years (and lots of hospital visitors for testing, anaphylaxis and check ups) go by and having hot rock bottom after witnessing a very serious anaphylactic shock that nearly took my beloved baby from us. We joined Instagram as a way to connect with others like us and find support… boy did we find support love friends and the answer to our prayers @socalfoodallergy provide a treatment for food allergies like Harper’s and she’s now half way through treatment and should be at complete food freedom by the time she starts school. None of this would have been possible without the amazing people who found us via Instagram. Forever grateful that we get to share our journey with you all.

I reached out to a Facebook moms group who informed me it wasn’t normal and to book to see my GP. I attended zoom meeting ups with other moms of kids with allergies and that’s were I first heard about @socalfoodallergy later on @natashasfoundation contacted me to feature our story on their page. And another mum who was doing to TIP program reached out to me to tel me about this life changing treatment. Our lives have changed so much and the best is yet to come.

Lily (9 years old)

November 2, 2022 / , , ,

She ate a peanut at family party. Had had crunchy peanut butter lots before this. Turned hoarse and swollen face. It was very clear we were in trouble, the developed a persistent cough en route to the hospital it was clear her airways were blocking. She was put straight to Resus at the emergency department. Allergy diagnosed and referred to kids allergy clinic for further tests.

We are in Northern Ireland where resources seem behind the times. No support groups etc. our clinic team does their best but most info has been found through Google. Anaphylaxis UK is useful. Following others on Instagram has been a source of support but the accounts are mostly based away from the UK.