Story

@peanotforme – 18+ years old

October 5, 2022 / , , , , , , ,

When I was ~1.5 years old, my mom gave me a slice of toast with a thin layer of peanut butter. My whole face turned red immediately and I was given antihistamines. It took hours for the redness to dissipate! We visited my pediatrician and allergist to have me tested. I had huge topical reactions to each nut on the skin prick test. With every reaction to peanuts / tree nuts I have had since then, my allergy became more sensitive and severe to the point where I can’t even be in the same room as nuts without reacting. I cannot eat anything made in a facility or on the same equipment as nuts because I risk anaphylaxis. 

I have never been able to overcome my allergy and was instructed by multiple allergists to not pursue oral immunotherapy (OIT) since it was too risky. But, I like to look on the bright side of living with a severe food allergy! I’ve gained great life skills such as awareness of my surroundings, attention to detail, and compassion. And… as someone with a sweet tooth… it’s a good reason to not eat every piece of candy / baked good in sight!

Growing up, I was the only child in my class with a severe food allergy. The awareness for severe food allergies was not very widespread and protocols were not really developed. My mom referred to my doctors’ advice and saw forums online regarding other parent’s advice on having a child with nut allergies. 

I have suffered a myriad of reactions from itchy throat / redness all the way to an almost deadly anaphylaxis event. As scary as each reaction is, you learn more about your allergy and develop a routine regarding medication. Recently, I redid a skin prick and blood test to specify which nuts I am allergic to now. It has helped me to quantify and understand my allergy more—though I will still be staying FAR away from nuts.

 Omar (15 years old)

October 5, 2022 / , , , ,

Diagnosed with Milk protein allergy as an infant at age 4 months. Diagnosed with tree nut allergies after anaphylaxis at age 2.

My son can tolerate small amounts of dairy but doesn’t eat it often. He’s outgrown some nut allergies but not all.

Used Epi-pen for emergencies only.

Diagnosed before there was information available.

 Cameron (10 years old)

October 5, 2022 / , , , , , , , , ,

Our son was 13 months when he was diagnosed with his first allergy. I fed him mashed peas and he started coughing, then choking a bit and developing hives. His coughing was persistent and he started vomiting as well. It was really scary and I remember feeling helpless. I called 911 and was alone at the time. Before that incident, our son had vomited regularly after eating some foods and we attributed it to reflux. He also had terrible eczema and we just thought he had overly sensitive skin. After an upper GI and swallow study, a few different medications and other specialists evaluating his immunology responses, we finally looked at food allergies as a test. It felt like the most non-linear maze until we got to the pea reaction…and then we followed up with blood work and a skin scratch test. The tests confirmed that our son was anaphylactic to peanuts, most tree nuts, eggs, most legumes (including peas), mustard, sesame and soy protein. He is currently 10.5 years old as of 2022 and has not outgrown any of his food allergens yet.

Once diagnosed, we found FARE, Kids with Food Allergies and FAACT to be the most informative and helpful for creating allergy plans, what to include in an allergy bag and how to understand the basics (reading labels, understanding and preventing cross-contact, and understanding emergency signs and symptoms of a reaction). For every day living, I found several blogs with tips and tricks, recipes and people steps ahead on the journey who could detail tools for navigating this forward-facing health condition! Each meal requires careful planning and we had to reorient our thinking to anchor our plans in safety while also having fun. I was also finding that the Facebook groups brought together families out of trauma (after reactions) and fears (of future reactions) and as a caregiver I didn’t want to raise my kids with extra anxiety. I ended up creating Feedyourcan.com (when some foods you just can’t) as an empowering way to use the struggle as the teacher to help our kids build lasting life skills that will serve them well in food AND non-food challenging situations.

Maria Alexander (@allergy.with.me04 – 18+ years old)

October 5, 2022 / , , , , ,

When I was a baby, I had terrible rashes all over my skin and would itch constantly. I would not keep food down, so when I was around 6 months old I had gotten allergy tested. My blood test showed up with dairy, wheat/gluten, chicken, turkey, egg, shellfish, peanut, tree nut, oat, barley, pea. I have single grown out of a few allergens, but I still have a majority of them.

A lot of the information that my mom and dad used was from FARE and some different books.

Lauren Reynolds (18+ years old)

September 1, 2022 / , ,

I have always had stomach issues from birth. I was a colicky baby and later was diagnosed with IBS. There were times off and on while I was growing up that we noticed if I ate a lot of dairy it would upset my stomach so we tried to limit it. In 2017 I had my gallbladder removed as I got sick every time that I ate. After surgery I couldn’t eat ice cream or drink regular milk anymore at all without getting sick. Fast forward to about a year ago when it seemed I would get sicker more often when eating dairy. My doctor recommended that I try an elimination diet and stop eating all dairy. It’s been quite the challenge when eating out and learning to watch labels for hidden dairy.

I google all foods to check for dairy. I watch the menus at restaurants and have to ask a lot of questions to make accommodations. I try to keep it simple right now with just protein, fruit and vegetables. I have found a-lot of dairy free items such as cheese, sour cream, almond milk, oat milk, etc. that makes it easier. I’m still learning and it can be really frustrating to want to eat things I used to love and not be able to until we can find a non dairy solution.

Emily (@allergyandwe – 18+ years old)

August 24, 2022 / , , , , , , , , , ,

I was born with extreme eczema especially in the face. After getting breast milk I always reacted. My parents took me immediately to our doc and special allergist. They figured out during my first weeks and months that I have many allergies. I did overcome a lot while growing up. Now I’m still allergic to peanut, egg, soy, peas, lentils, beans and kiwi. I’m also lactose and histamine intolerant but I manage to have it on a normal basis in discussion with my natural practitioner.

My parents mostly reached out to the best docs and allergists in Germany. Since two years I go to a natural practitioner who works on a scientific basis and starts with the roots (gut health and immune system). I really do recommend looking for one working scientifically and visiting on a regular basis.

Lora (@thatnutfreegirl – 18+ years old)

August 21, 2022 / , , , ,

I had my first reaction at five years old. It was Christmas and I was sat cracking Brazil nuts with a metal nut cracker. I wasn’t eating any of them, just enjoying the mess I was making! At some point I rubbed my hand across my mouth and immediately felt my lips start to tingle. I took myself off to look in the mirror and called to my mum, “my lips are bumping up”. One call to the doctor and some antihistamines later, I was shaken, but back to normal. As I got older I started to suffer with food anxiety and avoided any foods that I hadn’t prepared myself. Having a life-threatening nut allergy from a young age made me fearful of any social or unfamiliar situation – I carried two epipens and a pack of antihistamine everywhere I went, avoided any situation where food would be served, and only ate things I had prepared myself. I started following people with similar allergies to mine, and used them as sources of ‘safe’ food finds. Recently I have had skin prick and blood tests to further diagnose which nuts I am allergic to. This has helped me to feel more confident in trying new things and I have recently started eating in restaurants which has been a huge (and scary) step!

Olivia (>1 year old)

August 21, 2022 / , , , , ,

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!

Alexis (@alexisallergic – 18+ years old)

August 21, 2022 / ,

I never had a food allergy until I turned 24 and it happened out of the blue. One day I’m fine, the next I’m going into anaphylaxis over things that I ate literally everyday. It took 3 years to finally get a diagnosis of Hereditary Alpha Tryptasemia (MCAS) and another year to get a diagnosis of Churg Strauss Vasculitis, and over 10+ specialists. I still struggle daily because my allergies aren’t consistent and it’s hard to “stay strong”.

Shae Averaimo (@shaeallergy_07 – 15 years old)

August 3, 2022 / , , , , ,

I was diagnosed with a dairy allergy when I was 6 months old. When I was a baby, I had skin rashes, vomited after I ate, lost weight, and cried a lot. My parents took me to my pediatrician and that is when I was diagnosed. I had my first anaphylactic reaction at 1 year old after eating a small piece of cheese. That is when I saw an allergist and started carrying an Epipen. I am now 15 years old and I did not outgrow my allergy. Unfortunately, it is still just as severe as it was when I was a baby. I have learned how to manage my allergy in all aspects of my life. I was diagnosed by my doctor so I did not use any websites to diagnose. My family and I frequently use information from FARE’s website. I also use the Spokin app.