Category Archives: Food Allergies

First Christmas

Baby steps

The summer of 2011 was an interesting one. As I alluded to in my last blog, M took to his new diet like a proverbial duck to water and 9 weeks in, we finally began to see some tangible and very noticeable improvements. The number of toileting accidents reduced significantly and whilst we were still not “accident-free”, I no longer felt as if I was packing for a trek to the Himalayas every time I stepped out the door.

M’s weight did dip a little, but not significantly enough to give us concern and we all enjoyed a fantastic summer holiday. We even managed a holiday abroad – a week’s trip to Portugal with my Mum. We decided to relax the diet a little during that week after discussions with the GOSH dietetics team and M was able to once again enjoy chips with his meals! We even braved half of a small 1-egg omelette without too much of an impact on his health. Both M and G enjoyed a week of sun, swimming and Mediterranean food and I enjoyed being able to get away from home whilst still managing a challenging diet. We went prepared as Mum and I both carried food supplies in our cases and I suddenly became proficient in scanning food labels in another language!

The start of September saw not only M moving up into Year 1, but also our return visit to GOSH. I felt confident that we had established that M did not have an allergy problem with potatoes and thankfully our consultant agreed. We were encouraged to re-introduce potatoes back into his diet as well as trialling the re-introduction of some of the other forbidden foods. As it now turns out, we were definitely attempting to run before we could walk and the trials ended without success. This was a disappointment for M as he was desperate to return to egg mayonnaise sandwiches, but he faced it like a trooper and just got on with it.

It was at this point that we learned that there are in fact many reactions to food allergies. The most dangerous and well-known is an anaphylactic shock such as frequently suffered by those with severe nut allergies. M had never suffered from anaphylaxsis, which has led to people believing that he does not have food allergies, but rather food intolerances. However, as we now know, allergic reactions wear many different hats and we were to encounter some of these as we attempted to re-introduce some foods into M’s diet.

M’s most obvious reaction was the chronic diarrhoea that he had been suffering since he was a baby. This can be an almost instantaneous reaction, but frequently takes several hours to develop. The length of the attack can vary from person to person, but the experience is unpleasant for all.

However, there can also be emotional, social or psychological reactions that can occur up to 72 hours after a food has been eaten. Back in September 2011, M showed this kind of reaction when eating and drinking soya. After a couple of days of including soya back into his diet, M become uncontrollable and somewhat hyperactive. I can vividly remember sitting at a meal with my Mum, my Godmother and her husband at the end of 5 days with M being back on soya. He was unable to sit still, was constantly up and down from the table, was rude, unmanageable and nothing could convince him to behave. A week later in almost identical circumstances, but having been back off soya for 5 days, he sat peacefully, showing the most beautiful table manners and behaving as a completely different child. I have never seen such a dramatic display of how a simple food can have such an immense impact. Even now, we can tell if a trace of soya has crept into his diet unawares.

During our September appointment, we discussed our next steps with the registrar. Although M was a lot better than he had been 3 months earlier, we were still struggling with multiple toileting accidents a week and it was suggested that it might now be worth considering a set of scopes to see what was going on inside.

I would love to say that the next step was to have these performed, but in fact it took a lot of to-ing and fro-ing, several telephone conversations and another visit to London before we got confirmation that the scopes would take place. As we waited for the date of the scopes to be sent, M continued on the strict MEWS diet and we approached our first ever allergy-friendly Christmas!

Dietary Challenge #1

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The first thing to tackle was the introduction of the MEWS diet into our everyday life. M was a child who loved his food and was always keen to try new things. Having to take out some familiar favourites as well as the trusty fallback of chips was not going to be easy, especially as M would no longer be able to eat his all-time favourite meal: egg mayonnaise sandwiches!

Consider having to give up eating chocolate, fish and chips, roast dinners, cooked breakfasts and milkshakes to name but a few. That would be hard enough for your average adult to do and yet we were asking it of a 5 year old boy. No longer would M hold the family status of being able to eat “everything”; he was now reduced to having the most difficult and restrictive diet of us all. It is truly a credit to him at how brilliantly he took to this proposal. I think that this is when we first realised just how difficult the previous 5 years had been on him and how unwell he must have been feeling. It was pretty much without complaint that M stoically accepted the dietary challenge and 18 months on, we are still impressed with his positive attitude about it.

No longer could I resort to my freezer fail-safes on nights when time was running short or I didn’t want to cook. More or less every meal had to be cooked from scratch as it was the only way I could ensure that none of the forbidden five made it’s way into his meals and I became an overnight expert in reading and interpreting food labels.

From an outsider’s viewpoint, it’s extremely difficult to even begin to comprehend just how tough our new dietary challenge was. Perhaps the easiest way to de-mystify the impact and adjustments we had to make, is to show a “before” and “after” set of scenarios:

Before		After


Weetabix		Wheat-free cereal
Milk		Coconut or rice milk
Toast		Rice cakes
Butter		Dairy and soya free spread
Jam		Jam
Biscuits		–
Fruit snacks eg. Yoghurt covered fruit flakes		Fruit snacks eg. Fruit yoyos or stars
Fresh fruit		Fresh fruit
Sandwiches		Rice cakes or corn thins
Ham		Ham
Cheese		–
Crisps		–
Yoghurt		–
Mashed potato		Mashed sweet potato
Chips		–
Jacket potatoes		–
Tuna Mayonnaise		Tuna with coconut cream
Egg mayonnaise		–
Fish fingers		–
Sausages		Wheat-free sausages
Pasta		Wheat and egg-free pasta
Pizza		–
Ice-cream		–
Chocolate		–

The biggest problem I had with a lot of the “free from” alternatives offered in supermarkets is that potato flour is commonly used as a wheat-free substitute for flour. The initial ban on potatoes made this first dietary challenge a real test of my inventiveness and made Google one of my best friends!

I also had to tackle the issue of M’s weight. He had only been gaining a small amount whilst on his previous “normal” diet and now we were introducing a diet so healthy that he would naturally lose weight on it if I did nothing to counterbalance the lack of fats. I had to learn to put “added fat” into my cooking wherever possible and M went from having 1 or 2 packets of crisps a week to having 1 a day. His lunch box at school was now filled to over-flowing with fresh fruit and veg – thank goodness it was the summer and he could have strawberries galore as a treat – and I’m sure could have won prizes for just how healthy it was. He also was allowed to take an additional snack into school for mid-morning as there was nothing substantial to see him through the long morning session between breakfast and lunch.

Whilst we had dabbled previously with removing wheat and dairy from M’s diet, this was the first full-on approach to tacking his health problems. Dr Hill was confident that food allergies were a part of M’s illness, though we needed to establish which foods he was reacting to and whether it was as simple as “just” a food allergy. Unlike the earlier attempts, we were also warned that it could take at least 8 weeks before we saw any signs of improvement. This small, yet critical piece of information had never been given to us before, but proved vital as it did indeed take nearly 9 weeks until we started to see some changes in M’s toileting habits.

I am still amazed that we managed to go through so many medical institutes without someone thinking to tell us that the process could take so long. Looking back now, it seems obvious that the food needs to be completely expelled from the body and no trace left behind before the body can start to repair and yet, it had been assumed that we would know that – or perhaps it’s just that the gastro doctors we had seen before had not known this themselves.

By the time we reached September 2011, although we still did not have all the answers, M’s health had improved and we were well on our way to our final destination.

Reaching London

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In June 2011, we all set off to London for the first of very many visits to GOSH. Walking through those doors for that very first time is an experience I’ll never forget. Having heard so much about GOSH over the years, I had never imagined that one day we would be visiting in what felt like a last-ditch attempt to help our son. I was filled with awe, hope and finally a sense that we would now know one way or another whether something could be done to help him.

It was such a momentous occasion, that we had brought G with us too, feeling that it was important for her to be part of this new journey we were embarking on. I will be forever grateful to her godfather, Uncle A, who was on hand in London and able to whisk her away for an hour to play, whilst Mike, M and I waited to meet his consultant. The only problem was that M really didn’t want to stay with us and would have much rather disappeared to the park than sit and talk to yet another doctor in yet another hospital.

We didn’t have to wait too long and we were quickly ushered into a room with Dr Hill and a member of her team. Unlike many of the other medics we’d already seen, there was no sense of there being a time limit and I was able to fully explain what had brought us to her door. We went right back to the beginning, looking at every aspect of our 5 year journey so far. She asked probing questions and actually listened to our answers; she examined M; considered his height and weight; looked at the food diary that I’d been faithfully maintaining for months, before finally sitting back in her chair.

Perhaps I’m now adding to the sense of drama, but as I look back at the moment that was about to change all our lives, I can almost taste the palpable tension in the air. You have to remember that by now, every doctor we had seen had diagnosed toddler tummy, had rejected the idea of food allergies and felt that there was nothing wrong with M at all. If I were to discover the words “Munchausen syndrome by proxy” scrawled across M’s medical notes somewhere, I really don’t think it would surprise me.

Dr Hill looked at Mike and me and stated, simply,

“Well, there’s obviously something very wrong with this little chap”.

I could have cried, or possibly kissed her at that point! From that moment on, every difficulty we had faced over the past 5 years faded and we had a sense of purpose and of how to move forward.

Whilst usually favouring an investigative set of scopes initially, as we were already old hands at working within the constraints of a restrictive diet, Dr Hill sent us to the Dietician to discuss starting M on a MEWS diet. This meant that for the next 3 months at very least, M would be Milk, Eggs, Wheat and Soya free and, for good measure, because of my own problems with potatoes, we had to take those out of his diet too. This felt like a daunting task, but I knew I would do anything I needed to to seek a resolution for M’s problems. The dietician was fantastic and spent nearly an hour talking through how I could feed my hungry child whilst excluding all these food groups. Laden down with leaflets galore, the all important follow up appointment for September and several phone numbers to give me access to the help we would need, we left GOSH and headed for a local restaurant to enjoy our last “normal” meal for a long time.

As we sat waiting for lunch to arrive, I phoned my Mum to give her the news. She now says that she could hear the relief in my voice and I’m not surprised. I felt as if a huge burden had been lifted from my shoulders, all because one individual had listened and believed what I had to say about the health of my child. There was no question about our parental instincts, simply affirmation. We were right to have pursued in our goal and though we were still to wait another 18 months to get the final diagnosis, we knew that suddenly the future looked bright.

7 years to diagnosis

Searching for an answer