To insist on a referral or am I over reacting?

[Fcukthisshit]

My 2.5 year old Dd has suffered with severe constipation since she was tiny. I’ve been back and fourth to the GP with her numerous times and I feel like I’m being fobbed off with a prescription for laxatives. She has a good diet, with plenty of fibre and lots of exercise. An average day food wise looks like this:

Breakfast - baked beans and cheese on wholemeal toast and an orange.

Lunch - ham sandwich on wholemeal bread, a few crisps, cherry tomatoes and cucumber sticks, a biscuit and some grapes.

Tea: Bolognese made with beef, lentils and chopped veg, wholemeal pasta and cabbage

Snacks: lots of strawberries or blueberries (sometimes a punnet a day) a banana milkshake, an Ella’s kitchen prune pouch (Normal prunes are one of the few things that she won’t eat) and she has milk before bed.

We are currently using movicol but I feel like she shouldn’t need laxatives at all really with her diet. Yesterday, she hadn’t been for 4 days and she was in an awful lot of pain when she finally went. It’s horrible seeing her in so much pain.

The plan is to book another appointment with the GP and take a food diary, but WIBU to insist that they refer DD this time?

I’ve been putting off starting potty training for a while now as I don’t want to make things worse but she’s due to start nursery in August so I really need to get that cracked.

If I eat bread more than occasionally I cant shit. Its very possibly that.
I wouldnt say i had a strong gluten intolerance particularly in that it doesnt make me unwell, but I know several people who this is also the case for, so I suspect its quite common. Id cut out bread and pasta and any wheat products etc for a few weeks and see if theres any improvement

Have you tried prebiotics and probiotics? Might just be that her gut flora is out of balance.

I used to poo poo all the mumbo jumbo about gut bacteria but having a few weeks combination of high dose probiotics and prebiotics to feed them has made me go from pooing twice a week and constantly feeling bloated and uncomfortable, dreading needing the toilet as I knew it would really hurt to going everyday and the stools being soft and v easy to pass. Sorry if TMI.

Even consultant I saw fit something unrelated was impressed with the cleanliness of my colon saying it's rare in women as we tend not to be good at getting rid of waste.

@cornettoninja - all good at the min thanks. I haven’t had a major flare up (ie hospital admission) since 2016 so I’m pretty lucky. I will ask about constipation info next time I see my consultant though.

@vintanner - banana milkshake is only an occasional thing - maybe once a month. She does have eggs, every now and then (she’s had one for breakkie this morning)

I think there’s something in @bloomburgers advice.

I know constipation is really common in small children but my dd was on prophylactic antibiotics for a few months following birth and I’m convinced it affected her gut flora.

It’s Another thing I’ve struggled to get into her (movicol tends to be the battle we concentrate on).

Apples, carrots, rhubarb, humus, brown rice, pineapple, papaya. Do a star chart for drinks at regular times. Less wheat, less meat, more fish.

We stirred movicol into hot choc for dd.

My eldest had this and it has cleared up on his own. I agree with the suggestions about upping liquid intake and going for more "wet" vegetable fibre (fruit other than bananas, veg like peas and sweetcorn for example).

I would also give her a routine for number 2s and something fun to do at the same time such as a tablet, sticker book, etc. to make sure she at least tries to go everyday. To me that is the most important thing, to break the avoidance and overstretching cycle.
If you need to let her poo in the bath for a couple of days to help with the pain I would do it too (I gather poos will be very hard, so it will not even be too messy, just get hold of some disposable gloves), anything to minimise the pain and withholding.
This is of course compatible with asking for a referral too.

Ok, it’s clear that your correct approach isn’t working. And your GP isnt rushing to refer you, for all the good reasons that a PP has outlined.

So you need to try eliminating some foods in the short term, to identity the culprit/s. Remember it may be more that one.

Can I reassure you that no harm will come to your child if you eliminate certain foods in the short term. As a PP said, gluten is not a food group. Neither is CMP or lactose.

There are thousands if not millions of people who have lived for most of their lives without eating gluten/ cheese/ onions and they are probably healthier than the general population . If your child has a food intolerance , you will transform your her life and yours by working out what it is and seeing how you can substitute that so she is healthy and happy.

As a Pp said

There's also no evidence that gluten is an essential food group that can't safely be cut out for a few weeks to see if things improve. As long as she's still getting carbs and fibre, I think it's quite sensible to trial a GF diet for a few weeks. You can have a very healthy, balanced GF diet that includes things like brown rice, potatoes / sweet potatoes, and GF oats, bread and pasta. If it improves, talk to your GP / a dietician about getting a formal diagnosis and further dietary advice; if it doesn't, You be ruled out a possible cause without doing any harm

This is a great starting point. Based on the diet you have outlined in your OP, you could put your child on a GF diet and she wouldn’t even notice, by using GF bread / wraps / pitta and Gf pasta. I’d try 3 weeks to start off.

Personally I don’t use the Processed GF foods very much but they would be useful to you in the short term at least. Because by keeping everything else in her diet the same, you can quickly work out, for example, if it’s Wheat specially or gluten more generally that is causing the problem.

That’s hard to do if you change lots of things at once.

If that doesn’t relive her symptoms, you could try omitting other high risk foods and see if that works. Worth looking at the FODMSP stuff as she has quite a mixed diet with lots of other potential suspects, like beans, bananas, , high fibre veg, oranges .

You need to keep a very strict timed food diary for her and note any symptoms at all , when she has a BM and what it’s like. Also note her behaviours - is she excited, lethargic, scratching a lot. Note things like blotchy skin. Sleeeping well or badly . Put down everything ,

Note down everything she eats or drinks except plain water, even the juice ( in case it’s a problem with a colouring or the artificial sweeteners).

You also need to check labels for all processed foods. Many yoghurts, crisps and pasta sauces contain gluten as well as the obvious bread, biscuits and pasta. NEVER assume that a processed food will be ok.

Ds was on Movicol long term but it worked and we eventually tapered it off until he was off it in Reception. No problems since.

I have UC and I have a lot of trouble with gluten so I don't eat it. Too much fibre also plays havoc with my guts too so it might be worth reducing that too.

@ImNotNigel
Unless you are a registered dietitian, I'd be careful of offering such detailed advice.

The FODMAP diet comes with the advice that it is NOT to be used by anyone without professional supervision (I know the medical team, as part of work, who introduced this diet to the UK and have spoken to them.)

It is very restrictive and not suitable for a child. It is for adults where IBS is the last possible illness after all other possibles have been excluded.

Similarly, being gluten intolerant myself, and I fully agree with exploring this, it needs to be done with a paediatrician.

IMO this is partly a learned behaviour issue- poos are painful so the child may be holding onto them- and also one of lack of fluids, too much fibre from cereals and not enough from fruit and veg- they are different forms of fibre.

best GF pasta by the way is asda own brand. Indistinguishable

The Op doesn’t have a referral to a dietician or a paediatrician.

All she has right now is the fact that her child is uncomfortable and distressed by constipation. The Op suspects this is related to her diet.

Perhaps jinglinghellsbells you could tell me the risks and disadvantages of the Op having a 3 week trial feeding her child the same food as she does now but using Gf alternatives and keeping a detailed food, behaviour and symptom diary?

Yes it will cost her about about £15 in GF foods, if she continues to feed the child bread twice a day and pasta once a day. Or she could substitute with naturally Gf foods like potatoes, rice and oats.

She may have to buy a different brand of crisps. And give some chocolate, ice cream or sweets instead of biscuits.

Yes it will take time to keep a diary. A few sheets of paper or an app on her phone. Checking food labels also takes time.

Apart from that I’m struggling to see the disadvantages and why she should plough on doing what she’s doing now and hope that someday she might get a referral.

This has been going on for YEARS according to the OP. People seem absolutely terrified to make a single change without some expert telling them it’s ok.

For example, If you think your child might be ill from eating oranges, stop feeding then oranges . There are plenty other fruit and veg in this world. People who live in latitudes and climates where oranges don’t grow have been surviving for millennia without oranges.

Many of our grandparents never saw an orange or even a banana for YEARS during WW2. It didn’t kill any of them. They ate apples or pears instead.

You don’t need a dietician or paediatrician to give you permission to stop eating oranges , they are not a major food group. Stopping oranges is not the same as stopping all fruit and veg.

I don’t know why some people make this so hard, it’s as if they want to make parents ( usually mothers ) powerless.

@jinglinghellsbells I do really appreciate that you’ve taken the time to reply but I’m 99% confident that it’s not just a behaviour issue. She does hold poo when she is constipated which in turn makes the constipation worse, however She never holds poo when she isn’t constipated. She also eats an astonishing amount of fruit and vegetables and salad on a daily basis. My boys don’t eat anywhere near the amount of fruit and veg that DD does but they never have any issues.

Also, just to re-iterate - the average day was an example. Maybe there is the odd day that she will have bread twice (ie toast for breakfast and sandwich for lunch) but it’s rare. She has porridge or yoghurt and fruit regularly, also rice, soups, salads, jacket potatoes etc. Even with the Bolognese that I make, she doesn’t necessarily have pasta with it every time.

Food intolerances can have a wide range of symptoms over a varied timescale.

If I eat gluten I get bad abdominal pain and nausea for 6 hours. Then I am constipated for several days, perhaps even up to 4-5 days.

Other people get bloating or headaches and then diarrhoea for several days. Or some other combination of signs and symptoms.

That’s why you need to keep a detailed diary with times and quantities. So not just “ breakfast - toast “.

You need

8:10am 2 slices wholemeal toast with butter and strawberry jam, one cup whole milk
8:45am She said she had sore tummy and lay down on the sofa for 15 mins
930am very wet nappy

You might need to look back a few days to spot a trigger food - the pattern can take a while to show up. It’s not like allergies, where you usually get a reaction within minutes. That’s one reason why it’s so hard to identify.

Another reason is that it can be hard to spot hidden ingredients unless you are looking out for them . You might not see any immediate connection between sliced ham, boiled sweets, bread and packet soup but they can all contain lactose, for example.

The detailed food / symptom diary is also very important evidence to show a HCP. And it will alert you to other possible issues eg she is cutting back on milk and drinking a lot of diluting juice instead.

Some people find that they can get away with a small amount of their trigger food. So they could eat tiny piece of birthday cake as a treat but will be ok as long as they avoid gluten the rest of the time ( sadly that’s not me 😩).

BTW If you use prepared porridge mixture you will need to check the label as many contain wheat flour. Same with yoghurts, and ready made baked potatoes and soups.

I have to say that your DD sounds like a very good eater, both in quantity and variety. I wish my 6 year old ate as well as her.

I hope you soon find out what’s causing her health problems .

Just to add like other people I'm not cealiac but I have terrible constipation and pain which is mostly linked to eating wheat. I'm fortunate in that I can eat it say once a week with no problems but if it's in my diet regularly I just cant go to the toilet and have a lot of lower abdo pain. Not a good idea to cut anything out of the diet but you you could try a week of other carbs and normal diet ++ liquids.