How we live with food allergies...

I am a mother of two beautiful children who unfortunately suffer with multiple food allergies. Olivia is 6 and is allergic to gluten and dairy and Ronnie is 4 and allergic to gluten, dairy, eggs and seeds. Both children have CMPA which is 'Cow's Milk Protein Allergy.'

From the day Olivia was born she was classed as a 'sick child.' She just threw up every day after every feed, no matter what. Little did we know it was because of the milk. I was never told this could be the case, we just dealt with it. Olivia really struggled with weight loss whilst being breastfed, which we now know was due to her milk allergy but nobody ever said this might be the cause. As Olivia turned one, we tried to transition to cow's milk but this is when we realised things were not right.

The moment cow's milk went into her it came out quite violently within minutes. I left it alone for a few weeks and tried again. Realising that this was actually an issue, I went to see the health visitor at baby clinic and mentioned it. She advised me to go to the doctors with her and get a referral for the paediatric dietician. We went to the doctors and she referred us straight away and about 11 weeks later we saw the dietician.

The first thing the dietician asked was all about Olivia's problems so far. She then told me to keep a food diary so we could see a pattern. Thankfully, I had been keeping one anyway for the last 4 months. It contained everything that Olivia had eaten and drank and every reaction that had come afterwards. The dietician couldn't believe I had all of this information already for her. She had a read through and after 3 pages, she put it down and said "It's clearly CMPA." The dietician explained that Olivia was reacting to the protein in the cow's milk so goat's milk and soya milk were also off limits as they have the same protein count.

We had to start trialling her on oat milk, which made her throw up more, coconut milk, which she wouldn't drink or almond milk, which she tolerated but wouldn't drink. We could cook with it or use it on cereal though. We were told to cut out all dairy completely for 3 months to allow Olivia's stomach to attempt to heal and then slowly start reintroducing them to see how she reacted. We were told most children grow out of this but also, cutting out all dairy completely could make her allergy worse.

Obviously Olivia was the latter and got worse. Once we cut it out completely, she could no longer tolerate even the tiniest amount in her food and if we didn't read every label or would slip up it would end with Olivia being violently sick within minutes. Now if that happened, she would be repeatedly sick until all the contents of her stomach were emptied. Then she would be unable to tolerate food for the rest of the day, even up to 3 days depending on how much dairy she had consumed.

I found mealtimes really hard as literally everything I looked at seemed to contain dairy. I had to learn to read labels every time I shopped. For example, one week Waitrose meatballs would be fine, the next week the recipe would change and they would contain milk. I had to check for dairy but also for whey, curds and casein as these are all forms of dairy, too. We used to do online shopping but that had to stop as we had to read everything and the substitutions weren't acceptable.

So we cut out all dairy and then the reality really hit me. I could no longer just decide to go out for the whole day shopping with my sisters and just pick food up for Olivia whilst out. I couldn't pop for a coffee in Nero and get her a biscuit to keep her going. I forever had to have food and meals in my bag for her in case we got stuck and were out longer than I thought we'd be. We found eating out a nightmare and tried a few times, however she would usually end up with a cross contamination so we just stopped trying. Even having to walk out of restaurants because when we mentioned allergies, they wouldn't serve Olivia any food and wouldn't allow her to eat food from our home, in their restaurant.

So we started to get a handle on the dairy issue, that's when she just started being sick every single night, in her sleep, everywhere! She didn't wake up to be sick, we would just hear on the monitor a gut wrenching sound and go in and she would be covered in it, fast asleep. That's when I started to panic.

What if she choked on on her vomit while she was sleeping? And that's when I had to start fighting!

We were referred to the Children's Hospital and at our first appointment I was basically ignored. I wasn't spoken to directly, the male doctor spoke to my husband, who let's face it knew no details. He was at full-time work while I had Olivia full time with me. I wrote everything down about her diet and about what I thought was making her so ill. He just ignored me. I told him I was sure the link was gluten and immediately I was dismissed as a first time mom wanting to find issues. His actual words were that Olivia was severely underweight and I should go home and feed her a cheese sandwich and a packet of quavers.

I could have cried. To be met with such hostility from a professional who I had hoped could give her a magic cure was heartbreaking. She was tiny, so underweight and I can honestly say I could see her slipping away from me daily.

Our dietician was amazing and backed me up agreeing that there was something else up with Olivia and she thought it was problems with gluten. I had argued this fact with the doctor at the hospital only to be told "Dieticians like to add things in for effect!" I went away feeling neurotic and extremely sad. I argued for another meeting about 4 weeks later with this doctor and this time went in armed.

I had been photographing Olivia every day before and after food and I also started to document her vomit. The doctor was taken aback and he could not believe the photos, as when he had seen her before, she presented ok other than being severely underweight. When I went back and showed him the evidence of the amount of vomit she was producing and how bloated her stomach was when eating gluten, he literally turned around and apologised. He said what I had showed him was so profound that we needed to pull her off gluten straight away and start other testing avenues. He stated we needed brain scans to rule out severe neurological issues which she may have and also floated the idea of infant anorexia which I instantly dismissed as she was predominantly vomiting in her sleep. If it was infant anorexia she would be vomiting whilst she was awake, not sleeping.

The brain scans showed nothing sinister and I was so grateful for that. It just left the possibility of Coeliac disease. We tested for it but it came back negative. We were told we had to feed her gluten for two weeks for it to work but after one day with a very small amount of gluten, I chose not to feed it to her. It was making her so poorly and I just couldn't do it to her. I refused to put something into her that was physically harming my child. By this point in her life she had gone from always being around the 50th percentile down to the 2nd! She was put on watch by the dietician and had to go get weighed every 2 weeks. I felt awful as a parent and felt like I couldn't feed her anything. Everything I seemed to try just made her sick and poorly and she looked awful. She looked like a child from a concentration camp, thin and pale with sunken eyes and a tummy that would one moment be so thin you could see every bone to then being swollen and bloated.

We decided gluten needed to be avoided and that's when we began to see a difference. After a full month being gluten and dairy free, Olivia woke up and said to me - and this is what really broke me - "Mommy, I don't have that funny pain in my tummy anymore!"

Now she was 2 and a half and she had never complained about tummy pain as I think for her it was just normal. But to have a month off it all, she then realised what her tummy should feel like. I sat on my bed and cried with her on my lap.

All this was going on while I was pregnant with Ronnie. My midwife assured me Ronnie would be fine, there was no history of food allergies in our families and Olivia was the first so Ronnie wouldn't be the same. Then Ronnie was born and I instantly knew, he was losing weight just like Olivia did. We battled hard for 8 weeks to get Olivia back to birth weight and I didn't want to do this with Ronnie. So I went to the doctors and asked for a referral for him. Ronnie was seen at 8 weeks and straight away they told me he too had CMPA.

He was pulled off normal milk and had to have specialised formula. We went through 2 types of milk until they found one that worked for him. We were advised to start weaning early so that Ronnie could get extra nutrients so we started at 16 weeks. We were told to keep him off gluten and at 7 months we trialled him with gluten reintroduction. Day 3 we had to stop as he was night vomiting and being really poorly. We have since tried to reintroduce but we just cannot.

During weaning we found Ronnie reacted to egg, something thankfully Olivia doesn't react to. However, Ronnie's reaction was different. Olivia was just always so sick but Ronnie started to swell up. It was scary the first few times but thankfully he would respond to antihistamines. Then he began to react to seeds. This made things particularly difficult as a lot of gluten free foods have seeds as a main ingredient.

By this point I was very relaxed about reactions and was handling it all fine. It just added to my avoid list and I never went anywhere without antihistamines in my bag incase of reactions. Luckily for Ronnie, Olivia had done all the hard work along the years with the food that we just knew what Ronnie had to avoid. Olivia always battled to gain weight after spending 2 years eating the wrong foods but Ronnie had the right ones him so he gained weight normally and is a much more robust child than her.

Over time we have tried and tried to reintroduce gluten and dairy but always with negative effects. Olivia is always so poorly that we have decided to not try again. We are now at a level where Olivia is gaining weight and more importantly maintaining weight and this is such a huge achievement for her. Life with an allergy child can be sad. Your child will always be the exception in most settings, school mealtimes, birthday parties, and even on play dates. I have friends who will bend over backwards to include us and friends who will actively exclude us so they don't have to deal with it. I don't get offended as it's just the way some people are and not everyone is confident enough to try. Some just can't look past themselves to include everyone. It's just sad for the children when they are excluded as they see the world as a fun, inviting place whereas I don't.

Allergies scare some people. I have people ask me how on Earth do I cope? Well, I have to cope as I am their mother and if I can't cope, who can?! Others ask how do I allow others to cook for them? Don't get me wrong I do panic when I see someone else cook for my children but we have to try otherwise my children are going to forever lead a solitary life at home with no experiences. I would say 1 in 5 experiences of others cooking for my children end in cross contamination and poorly children but if we don't try, others won't learn how to cope with them.

You have to be constantly vigilant. You always are as a parent but as an allergy parent, even more so. Once, at a playgroup we went to weekly, I went to the toilet and left Ronnie in my friend's charge. Whilst I was away her child got into an altercation with another child and Ronnie wandered into the room where they served snacks. Another mom decided Ronnie looked hungry so passed him a snack! Something that as a parent I would never do anyway but even more so now I have allergy children. You just never know what that child might be allergic to. I returned from the toilet to see Ronnie, probably around 14 months old, sitting at a table eating some cheese chunks and a biscuit! I had no words for the woman who decided to feed my child, I just stood there. She looked up at me and jokingly said while I was scraping food out of Ronnie's mouth, "Oh, he isn't allergic is he?" and I turned and snapped, "Actually, yes he is!" She replied "Oh, well he had a toy cow in his hand so I assumed it would be alright" I retorted with "Well, if he had a Lego in his hand would you have fed him that?!!!"

Everywhere you go you have to be careful that people don't accidentally feed your children. We have been to softplay before where children have taken food into the play area. It may seem innocent but what if they leave it there and another child tries to eat it or touches it and has a reaction from touching it? I have never allowed my children to take food in as the foods my children eat always contain nuts and that's a dangerous food for other children.

I also have constant questions like "So when are they going to outgrow this phase?" It has become completely clear to me that they will never outgrow these issues, and I don't need them to. I can cope with how they are and I have changed how we eat as a family. Don't get me wrong, me and my husband do not eat gluten and dairy free all the time but we do it when we need to for the children. We eat gluten bread and the children have theirs gluten free. We have separate toasters so there is no cross contamination and we have different cooking pans and utensils so again there is no cross contamination. I always prepare the children's food first before preparing anything gluten.  I don't allow seeds in the house and I don't allow gluten flour in the house. Anything containing flour is gluten free in our house so that way we can't mistake anything.  All the crisps in our house are gluten free again so that if ever  the children help themselves no mistakes can happen. Although saying that, Olivia is almost 7 and can say what is gluten or gluten free now.

When the children attend a party I have to take their food. I don't expect anyone to cater for my children and I don't mind taking their food with me. I always try to match what the other children will be eating. It's other judgy moms that get my goat in this situation, looking over and judging why I have my own food, all thinking that I think I'm superior. Or does she follow some weird diet and is she forcing the children to eat weird vegan shit for a fad. NO JUDGY MOM! I am trying to give my children a nice pack up in the middle of the party and trying not to make them feel different. Also I sit with them because they are only young and at big children's parties food is being passed around and not everyone is aware of their needs. Ronnie mainly may attempt to eat something he has been passed, Olivia never would, she even went through a phase where she wouldn't eat anything daddy had given her till she had asked me if she could eat it.

Life is generally normal for us now, I know how to feed my children and that's fine. I still have to online stalk places when we go on holiday to make sure I have options while we are away. Even as simple as finding out what shops are there so I will generally know what I can buy as Tesco don't stock our bread but Asda do! Eating out has become a lot easier over the years. I have learned the correct things to ask for. Not just asking if the food is gluten free to then find out it's cooked in a fryer with gluten products and will make Olivia very poorly. The growing need for 'free from' foods places have become a lot better. Awareness is greater now so you don't get stared at when asking first thing when you enter a restaurant, for the allergy folder. They know you mean business. Options in supermarkets have grown. Veganism has vastly improved demand for products which again is greatly appreciated.

The biggest thing I get out of my whole situation with the allergies and everything we went through with the children is if you know something is wrong don't ever let a medical professional tell you otherwise. They may be experts in their field but you are an expert on your own child. Don't ever be scared to fight for them. At the start I had a battle with getting the doctors to listen to me and I know I went there for their help. Ultimately I knew what was best for my child because I had her everyday not for some specialist to come in and tell me I am making it up and go away.  Now a very different person to myself may well have done that and had I done it I guarantee Olivia wouldn't have survived. She didn't have a spare ounce to give back then. But I stuck to my guns and I stood up for Olivia and that is the best thing I could have ever done for her. I also cannot fault the paediatric dieticians, they were on my side from day one. I had awful emotional breakdowns in front of them, crying and begging for help and they did. They went above and beyond for me and my family. If anyone finds themselves in a situation like this you just need to go to the doctors, the health visitor, anyone and get a referral and if they don't listen, try again.  Follow your own mother's instincts and keep trying. One day someone will listen. Another thing, night time worries can always be listened to by Facebook, I joined the main CMPA Facebook page which is full of normal moms like you and me going through these issues everyday and what your doctor may have never seen before, someone on there has!  They were a great support to me and I would like to think I have been a support to others over the years answering posts off new moms who have no idea why their child is so poorly.