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Doctor says cmpa but I think it’s lactose intolerance

(16 Posts)
Darksideofthemoon19 Tue 24-Sep-19 15:10:55

Still none the wiser.

Dd3 has had diarrhoea from the day she was born. I can’t remember the last time she had a normal poop, and if anything it’s getting worse as she gets older.

She has a bloated tummy most of the time and trumps a lot.

I’ve always thought she would get better and now feel like an awful mum. Iv been unable to potty train her due to it.

Today I took her to the doctors and they said it could be cmpa but realistically she should be starting to grow out of it.

She has more symptoms for lactose intolerance than cmpa, like the bloated and diarrhoea that smells vile.

I’m not sure what to do?

They said to cut dairy out for 4 weeks then go back. They said there’s no point for dietician yet as she’s gaining weight.

Do I go lactose free?

The doctor wasn’t the best tbh, he had a senior doctor in with him as he was training.

OP’s posts: |
Busydrinkingcoffee1 Tue 24-Sep-19 15:16:08

My DS had very similar symptoms, the smell was unreal and it was CMPA. He was referred to the hospital for pin prick allergy testing after this. Fortunately he has grown out of it from their last blood tests but he still won't take normal milk now as he's not used to the taste and dislikes it. I would try cutting dairy first if it has been suggested then if that doesn't solve it cut the lactose, then at least you can go back to the doctors armed with that?

JessUKUS Wed 02-Oct-19 09:13:58

Going dairy free is going lactose free.

randomsabreuse Wed 02-Oct-19 09:20:22

You being dairy free is lactose free for you. You create lactose in your milk regardless of what you eat.

My DS seems to be lactose intolerant - we added colief (which is lactase) to a small amount of expressed milk before every feed and it made a massive difference.

dementedpixie Wed 02-Oct-19 09:22:53

Lactose is the sugar in milk so if you are cutting dairy then you are cutting most of the lactose out too. Did they diagnose as 'toddler diarrhoea'? Normally means increase fat and decrease fibre

dementedpixie Wed 02-Oct-19 09:23:32

Is she 3? Or is she your 3rd child and younger than that?

elaine26 Wed 02-Oct-19 11:14:28

My DD is 12 and lactose intolerant, depending on her age going dairy free only might not help your DD as we found lactose in lots of foods including crisps and biscuits, even in some medications. We seem to have it under control now but it took months to get a diagnosis (and a kind patient pediatrician)

Darksideofthemoon19 Wed 02-Oct-19 14:02:41

Sorry she’s 3.

Ds was on lactose free milk and I still think he suffers abit but will not speak about his bowel movements at all.

She’s been on lactose free milk etc for a week and it’s made zero difference.

She said yesterday when the teacher at pre school changed her nappy she pulled a face because of the smell.

Do I go completely cows milk free now?

She has an appointment with the dietitian in November.

We are thinking of getting her tested privately but not sure where to do it?

OP’s posts: |
Darksideofthemoon19 Wed 02-Oct-19 14:03:45

No they didn’t diagnose toddler diarrhoea as she’s had it from birth

OP’s posts: |
dementedpixie Wed 02-Oct-19 14:19:14

I would try dairy free then

MAFIL Mon 07-Oct-19 19:54:31

I would try a strict dairy free diet for a few weeks. CMPA is far commoner than true lactose intolerance in this age group, and it can cause secondary lactose intolerance. Lactase, the enzyme that breaks down lactose, is made in cells at the very tips of the digestive villi in the intestines. Anything that causes gut inflammation, including CMPA, can damage those cells and cause secondary lactose intolerance. If the underlying cause of the inflammation is removed, the cells heal and lactase is produced in sufficient quantities again.
If no improvement on a dairy free diet after 2 or 3 weeks (and you need to check ingredients in everything and be very strict) I would go back to the GP and ask firmly for a referral to a paediatrician (ideally a paediatric gastroenterologist). There is no simple test for CMPA unfortunately as the only reliable tests depend on igE and not all reactions are IgE mediated. A positive test is helpful, but negative testing does not necessarily mean that your child is not reacting to cows milk protein. Exclusion diets are generally the best diagnostic tools. The other most likely candidate is gluten and there are different tests for that. Dont be taken in by tests like hair tests and other nonsense you see online. There is no scientific basis for these "tests".
Have a look at NICE clinical guideline 116 on food allergies in under 19s. It will tell you what your doctor should be doing. You might want to print it out and take it to your next appointment so that they know that you know what to expect.
Good luck - hope you get the answers you need soon.

SinkGirl Mon 07-Oct-19 20:34:47

She has more symptoms for lactose intolerance than cmpa, like the bloated and diarrhoea that smells vile.

My twins both have CMPA and had this issue.

Lactose intolerance is very rare in babies and toddlers. CMPA is much more common and exclusion followed by the milk ladder is the only way to confirm.

Have they not suggested eliminating dairy before?

Darksideofthemoon19 Tue 08-Oct-19 09:00:54

So Iv came to realise it is CMPA 🙈

We’ve gone completely cows milk free. She has a dietician appointment in November. I’m thinking about getting her tested privately? I want to make sure she’s not allergic to anything else like soya etc. Would it be worth it?

Iv not noticed a massive difference but we only went milk free since Saturday.

OP’s posts: |
SinkGirl Tue 08-Oct-19 09:39:17

Private testing won’t help sadly. The only reliable tests for allergies are blood and skin pricks. These only work for IGE mediated allergies (the ones that cause hives on contact, etc). CMPA is what used to be called an intolerance, so the effects are delayed and more systemic (eczema, gastric issues etc).

Dieticians referred us to an allergy nurse who did skin prick testing - egg allergy confirmed by skin prick but no reaction to milk, even though she agreed he definitely has CMPA after I showed some pictures of reactions.

When I cut out dairy my twins eczema vanished within 48 hours. Took a bit longer for the scabs to heal obviously but the actual eczema just went. These were two days apart.

Darksideofthemoon19 Tue 08-Oct-19 10:16:47

That’s crazy!

Looking back I’m surprised it wasn’t picked up when she was a baby. She has constant skin infections, behind her ear, eczema on her arms and legs. We tried so many different creams from the doctors.

She now has really dry skin on her back and belly.

OP’s posts: |
SinkGirl Tue 08-Oct-19 10:50:39

Unfortunately if parents aren’t in the know and pushing for it, it’s often missed.
My twins were also allergic to soy as babies but are now fine with small amounts. Still can’t tolerate any dairy.

If things don’t improve after 3 weeks I’d consider trialling without soy as well, they’re commonly linked.

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