Is There a Cure for Food Allergies?
“There’s no cure for food allergies.”
I remember sitting in the doctor’s office the day my daughter, Eva, was diagnosed with life-threatening food allergies. It was an overwhelming mix of emotions. On one hand, there was a feeling of sheer relief that someone validated the allergic reactions that I saw her having wasn’t a figment of my imagination, and I wasn’t going crazy.
But as I sat there waiting to find out how this could be fixed, I was devastated to be told it couldn’t.
“There is no treatment” my world crashed down around me. I just couldn’t accept that this would be my new reality, and at that point, I couldn’t even comprehend what it meant to ‘just avoid’ allergens.
I was told that lots of children grow out of milk and egg allergies, and it would probably lessen in severity over time, and that’s all I was left with, along with a prescription for 2 EpiPen’s.
At every allergy appointment, we arrived with the hope that she would have naturally grown out of her allergies, but I would leave more crushed each time as her test results showed that she was even more allergic to the food since the previous test, as well as becoming allergic to new foods. Our hopes shattered, and it felt like starting from scratch, it got me every time. My heart would fall to my stomach, I would cry and drink wine to numb the pain. I had no-one who could understand how painful this was. I wanted to plead with someone to help us but no idea who.
We have an innate trust in our doctors and medical system. It’s ingrained in us from childhood; if we feel ill, we go to our doctor, they work out the cause, and they give us some medicine or a treatment plan. Sometimes it might be a hard road, but at least there’s usually a plan in place, and hope to hang onto.
It had taken me so long to get to sit in this chair, the referral from my GP, the wait for a specialist appointment to be told by the doctor that the only path forward was to avoid the allergens for as long as my daughter had allergies and that it could be lifelong.
Turns out, allergens are everywhere! And they crop up in places you would least expect! It can feel like you are some sort of forensic detective, working out the exact ingredients, how the raw ingredients are processed, and whether any trace of an allergen could have come into contact through ANY PART of the processing! Because you simply cannot take risks and as a parent of a young child, it’s down to you to check and make sure you don’t make a mistake!
Our family has spent the last four years dedicating our lives to strictly avoiding Eva’s allergens, and whilst I have been so focused on doing that, I’d not thought about whether there were any possibilities of treatment until recently.
I read “The end of Food Allergy” by Kari Nadeau and Sloan Barnett and I started doing some more research into what actual treatments are out there, and how well they might work?
Press headlines and articles around cures for allergies, often make it sound so easy. The truth is, there is no proven cure as yet and the treatments can be as complex as the subject of allergies themselves.
There are medical trials in progress worldwide that may offer a way to improve quality of life, but there is no solid science that is reliable enough at this time to provide a permanent cure.
Most of the allergy treatments being trialled are based around immunotherapy, using a tiny amount of an allergen to get your body used to it so that it doesn’t see it as a threat.
Repeating these exposures over time (several years) allows the body to become used to the allergen and eventually produce less of an allergic reaction. This process is called desensitization. Traditionally, this has involved consuming tiny amounts of the allergen protein orally, but recent developments have brought in delivery through skin patches or a small dose of liquid under the tongue.
You might have already heard of the ‘Milk Ladder’, which is a method of desensitization. However, it is only recommended for mild-moderate allergies and should only ever be carried out with guidance from your dietician or allergy consultant. Eva’s allergic reactions to milk at the moment are far too high so this is not an option for us right now. But it is highly successful to help children desensitize from their allergen.
There are a few medical trials underway in the UK, which offer some kind of path forward, but nothing like the options available in the USA. At present, the trials in the UK are only available for Peanut.
Joanna Homer, a Hertfordshire mum was invited for her son to take part in the EPITOPE STUDY at Evelina London Children’s Hospital, a peanut patch study for children aged between 1 – 3 years.
The patch is great for parents with young kids who might otherwise struggle to get the allergen into the diet every day.
“A small amount of peanut protein goes into the skin, it’s like a plaster you change every 24 hours. We particularly liked that the allergen was applied to the skin rather than orally and the application of the patch quickly became a normal part of our daily routine.
If the patch successfully desensitized Jude to peanuts, it would mean we have one less allergy to constantly worry about. If he was accidentally exposed to peanuts it could potentially prevent or reduce the severity of an allergic reaction.”
These experimental treatments do not mean that severely allergic people can start consuming their allergen’s freely, but that they can eat food containing traces of them and tolerate a small amount without having a severe, life-threatening allergic reaction. This can mean removing a level of daily worry and fear, resulting in a complete lifestyle change. Never having to request special meals or have panic attacks in the supermarket, and never having to battle the crushing anxiety that comes from eating outside your own home.
The Effect Can be Life-Changing
Whilst these trials are in the final stages of clinical development the success stories can certainly offer the allergy community, hope!
They can offer a life-changing impact on the individual, no longer worrying about hugging a family member or panic about going out to a restaurant. Those who have experienced this newfound freedom have said that, as hard as it was, it has been worth it.
Jiya, a food allergy advocate raising awareness of her allergies through social media as well as a podcast host, aged 16, living in New York has had Oral Immunotherapy Treatment (OIT). She had severe allergies to eggs, tree nuts, and sesame and suffered an anaphylactic shock after eating in a restaurant that had nuts in her curry, despite letting them know about her allergies.
After, she was understandably anxious about eating out and was terrified of it happening again.
It becomes an instinct to protect yourself and shy away from social situations that may put you in danger. It’s mentally exhausting and incredibly isolating, checking every single packet, declining invites, constantly justifying and explaining yourself.
Her parents had heard about immunotherapy from their neighbour and encouraged Jiya to try it. She was hesitant at first, as most people are. Imagine having spent years of your life avoiding this imminent danger, making great pains to never make a slip-up or mistake because you know the harm it can cause to now having to put that very same thing into your body voluntarily goes against people’s basic survival instinct. Still, the idea of a life without restrictions, the dream of a typical college experience, and the out-of-reach fantasy of being a normal teenager was enough of an incentive. A month later, she decided to give it a go.
It took two years of medication, monitoring, and getting her body desensitized to the foods she was allergic to. She was prodded, tested, and examined, an incessant cycle of hospital appointments, medications, and timetables. She continues to take daily medication and must ensure she continues to eat her allergens daily to keep the effects of all the hard work.
So, was it worth it?
The effect has been completely life-changing for her. “I can now eat out at restaurants without worrying, hug my friends, plan to travel abroad, or kiss a boy without an interview about what he’s eaten for lunch first!” She can look forward to graduating high school and moving into the world as a confident young adult instead of carrying with her the crippling anxiety that shrouds most sufferers of life-threatening food allergies.
Jiya still has to carry her EpiPen’s with her for peace of mind, but the mental load of having allergies has gone, giving her such a transformed quality of life. It’s hard enough being a teenager anyway, and now she finally feels ‘normal’.
It’s Not Without Risk
Whilst Jiya’s story is inspirational, these treatments are not without their risks and problems. There have been instances where this treatment has induced allergic reactions and even anaphylaxis. This is why they need to be medically supervised. It is incredibly important that these treatments are not attempted at home!
The treatments are also not widely available in the UK or covered by the NHS, making them prohibitively expensive for many families, with peanut immunotherapy treatment currently underway at the Cambridge University hospital ringing in at an eye-watering £17,000. This might mean travelling long distances for treatments or relocating families to nearby hospitals for daily doses. Also, as of now, they are only available for peanut allergies. There is also little evidence to suggest that these results are permanent, and medication has to be continually taken to prevent the allergy from re-establishing its severity.
The trials themselves can be a harrowing experience to go through. The constant risk of a reaction and the mental weight of having to consume the very thing that is trying to kill you can be very tough.
With every dose, an intense set of rules are in place to ensure nothing increases the patient's heart rate. This involves sitting completely still for three hours after consuming the medication and letting the body completely relax, no using your muscles, no heavy breathing, and no excessive laughing. The thought of my four-year-old daughter achieving that on a daily basis is somewhat of a stretch!
The good news is with serious allergies affecting an ever-increasing amount of the world’s population, extra time, money, and medical brainpower is recently being devoted to breathing new life into new paths of study. I hope these may, eventually, yield something like a cure.
Until then, I will keep meticulously reading the back of food packets and examining menus with forensic accuracy because, at this time, avoidance is really the only strategy I have to keep my daughter safe.
Personally, I would seriously consider any opportunity for Eva to have a normal life and will keep researching and waiting for any trials that become available for her varied and long list of allergens. I just will not accept that Eva will live with this forever. I want to find a way for her and will continue to fight.