In Remission! Yes! So…what do we feed her?

Round 2 Modulen was complete, Methotrexate started, and Stella was finally declared In Remission. Yay! Her Fecal Calprotectin (inflammation marker) was 73, or thereabouts – Phew! A LOT nicer than 1700.

We were delighted. However, I started to worry (of course) that when she began to eat food again, despite being on medication, that this inflammatory marker would creep back up.

We knew that Stella already had a few food intolerances, we knew this thanks to “Poo Diary.” We knew that, for example, gluten wasn’t looking like it suited her, and possibly neither was too much dairy.

We were pretty desperate for a diet plan which would best suit Stella. We wanted someone to give us one, tailor-made, which would work with the Methotrexate and allow this remission to continue, ha! Surely not too much to ask?!

We realised quickly that this was indeed, too much to ask. The hospital team is wonderful with what they do but they obviously cannot give tailored dietary advice to individual Crohn’s patients, least not children anyway. I imagine this is because, as it stands, there doesn’t seem to be any evidence that certain diets work well to limit flare ups in Crohn’s. Plus, also, what works for some, might not work for others, so where would they even start?

Their advice is to follow a healthy, balanced diet which of course makes sense, however, we were concerned that this alone, might not work for Stella. And also just not blinking prescriptive enough for me (the neurotic). I had to do a bit more investigating into what food might work better for her, and what might not.

Through my investigative work (!), I read and heard, anecdotally, past tales of much older people who were diagnosed with Crohn’s in their teens/twenties, a lot of them ended up having to have parts of their bowel removed and some now have colostomy bags. Their quality of life now so much better. A pattern emerged after reading a few similar cases that these people perhaps had Crohn’s undiagnosed for years, ate their usual diet, but suffered; it occured to me that Crohn’s was maybe not managed very well back in the day. Lucky for us, as far as I’m concerned, it is now.

I’m surmising that these older Crohn’s sufferers would have experienced years of intermittent flare ups, unsure of the cause. When Crohn’s was eventually diagnosed and treatment given, scar tissue in the digestive tract was often left as a result. This meant that eating certain foods, particularly high fibrous foods, was difficult and caused pain, resulting in a limited diet of much less bulky/fibrous foods? From what I’m reading now, it would seem that eating a diet low in fibre, whilst necessary in some cases, isn’t all that good for health – more on that later.

I then started to understand the difference between these much older people with Crohn’s and our wee girl. The difference being, we reckon, is that Stella’s was picked up early therefore thankfully no scar tissue formed. We believe that this is the reason she can eat a huge variety of whole, high fibrous food without it causing any pain, for now, anyway. For her gut (and overall) health, we’re hoping that this ability to eat highly nutritious, fibrous foods can continue.

Initially, around the time of diagnosis, I had thought that feeding Stella a diet of low inflammatory foods would be the answer. It wasn’t!

I had done lot of research into low inflammatory foods and it made sense to me; we would stick to things like fish, fruit and vegetables, whole grains, oatmeal – apparently known low inflammatory foods. We would avoid, or at least cut down on, high inflammatory culprits such as highly processed foods and refined sugar. I even took my first trip to Wholefoods and fell in love with the place- it shut down a month later ( just as well because it was a small fortune). We tried this diet for a couple of months but, frustratingly, alone, it didn’t work (hence the 2nd Modulen period was required). We think now that it had something to do with gluten.

We’d had a particularly memorable weekend with friends just before the diagnosis; we had given up trying to think of what could be the reason for the issues and let her eat whatever she wanted. It was pretty hideous; she ate a lot of rubbish, and amongst it was a lot of gluten. She suffered terribly. There was a lot of pain, as well as bloody stools, not just loose, which was bad enough. It was the worst I had seen her. There’s no way we would feel comfortable letting her eat gluten, which clearly her body doesn’t like – whether she is on Methotrexate, or not. Just to point out, prior to this weekend, we had been reducing gluten, and it seemed to work for her. Again, we knew this our trusted friend, Poo Diary.

We arranged for Stella to have a food intolerance test carried out, just to confirm our findings: it did. Gluten and cow’s milk came back as highly intolerant, as were nuts (least we knew then that the test was accurate!) Butter was okay, which was excellent news because she loves the stuff.

I’m well aware that it’s probably rather odd to be so concerned every day with someone else’s bowel habits, yet we’ve completely normalised it in our own way. It seems to be the easiest way to reassure us that things are okay and what she is eating is suitable – (we hope, anyway). Similar to the sun care regime, however, I’m well aware that we’re getting away with it just now because of her age. I’m not convinced me asking “Poos okay, love?” every day when she’s 17 is going to be met with the same compliance.

But we do this enquiring fairly frequently and I still now, even though she’s been declared in remission, and has been for about a year a half now, breathe a sigh of relief when there are normal stools and no hip pain complaints. Most days I feel like my nerves are shattered. I’d love to know if other Crohn’s parents feel the same? This disease seems to be fairly unpredictable for some people. It’s like I’m anticipating a flare up, which I know is not a helpful mindset. But I know we could have it a lot worse, and also that this endless worrying comes with the usual territory of being a parent.

So, after all this, we came to the conclusion that a diet that would suit Stella would be: Gluten free, mostly dairy free; low inflammatory, high in fibre, healthy and balanced. Good grief.

Going gluten free definitely took some time to get used to, there were a couple of times when Stella was symptomatic (sore hips and loose stools) but we were able to trace it back to an accidental gluten ingestion. FYI, strawberry laces contain gluten, who knew? Another time was a stock in soup which contained wheat. Woops.

Dairy free has been helpful, we think, in terms of keeping inflammation down. We are hoping, however, to reintroduce dairy back in to Stella’s diet, because I’m all too aware of the health benefits that she is missing out on. Dr Michael Mosley (who I love) spoke recently about iodine levels and the concern that he has for people who follow a dairy free diet (Great! More worrying!) Iodine is apparently abundant in dairy, more so in full fat milk. Ideally we’d love Stella to tolerate a cup of full fat milk and to incorporate regular yogurts etc into her diet, but we’re a good bit away from that just now.

It’s a bit daunting deciding to cut out a major food group, like dairy, out of your growing child’s diet, especially for people like me who just want to follow guidelines when it comes to anything kids’ health related. I certainly didn’t do this with confidence and, as I said in my ‘disclaimer/ of sorts’ in my first post, no health professional advised us on this, this was purely us trying to figure out what to do ourselves.

My first thought regarding no dairy was to panic at the obvious thought of her not having enough calcium. However, after establishing a diet suited to her, I calculated her daily calcium intake and found it to be the right amount for her age. Fortunately, Stella likes to eat calcium rich foods like sardines (the ones with the bones help this), green leafy veg, beans, seeds- her absolute fave is chia seeds which are really rich in calcium, although very expensive, dammit! Coconut milk is what we use just now for her, and I’ll go for the one which is fortified with calcium and other vitamins. Gluten free bread is also fortified and she has a calcium and vitamin D supplement every day. As I said… not confident!

Currently, we are trying her with little bits of live yogurt and so far so good, although I think maybe too early to tell. I’m hoping that this can build up and eventually dairy can be included in her diet – with no negative effect on her inflammatory marker. Her next Calprotectin test is in June so will be interesting to see the result.

What I do find with this whole thing is how expensive high quality food is. It seems to be cheaper to buy processed ready meals for your dinner than it is to buy whole foods, sadly. Gluten free food is insanely expensive, I read somewhere that going gluten free costs a family an extra £2000 a year. I can believe it and because Stella isn’t Coeliac, we don’t qualify for discounted gluten free food. So I cook as much as I can from scratch and meal plan to the nth degree. That statement alone will be HILARIOUS for my friends to read. I was a terrible cook. I didn’t even really try. My entire 20s consisted of eating pasta with tomato sauce, from a jar. And eating out. It’s pretty shocking that it took something this for me to finally realise how valuable quality food is to health, not just for Crohn’s. Anyway, onwards n upwards….