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Allergies and intolerances

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Original poster

TMI warning - dairy free toddler, poo?

21 replies

ThatPlanWorked · 15/12/2018 13:34

Hello, apologise for the somewhat TMI post!

DS has followed a dairy free diet all his life, after having CMPA diagnosed very early. He has not managed to tolerate any dairy challenges so we have been advised to continue on a dairy free diet for now. He is 2.8yrs old. We know he is also sensitive to orange and tomato, but is ok in small infrequent quantities.

Our issue is his poo! It continues to be completely unmanageable without a nappy, has no form, can have mucus, foul smelling and frequent (2-3 times a day). It is really hindering his ability to manage toilet training as he can use the toilet for wee, but becomes very distressed with #2s.

He is starting school nursery in September and I am concerned about how he will cope. He has never had any formal allergy testing and I keep being fobbed off that it isn’t very accurate.

Does anyone have any guidance? I just don’t know what to do. He is otherwise healthy, growing fine and meeting all milestones.

Thank you

OP posts:

JiltedJohnsJulie · 15/12/2018 18:56

I’m not an expert, I just have CMPA myself and I’d say that it sounds as if he’s still having a reaction. Has he ever been allergy tested? Are you under a Paediatric Dietician?

shouldwestayorshouldwego · 15/12/2018 18:59

We had to cut out soya as well because the structure is similar to milk. Have you tried looking at other possible reactions. I would ask to go back to dietician.

shouldwestayorshouldwego · 15/12/2018 19:00

Alternatively could he be constipated. Sounds counterintuitive but it can lead to leaking. I think you need to go back and push harder.

FoofFighter · 15/12/2018 19:03

Sounds to me like he has something else he is reacting to

Wingingthis · 15/12/2018 19:07

Soya or eggs?

Wingingthis · 15/12/2018 19:09

Join the CMPA support group on Facebook if you haven’t already for more advice

Original poster

ThatPlanWorked · 16/12/2018 00:12

Thanks all. We also cut out soya as he reacts to that too! Cooked soya appears to be fine. I was told by the paediatrician that as he’s dairy free his poo won’t be formed and not to worry. I can’t help but worry as he gets so distressed if he has an accident. I have looked at seeing someone privately, but cannot afford the £680 fee (London, consultation, skin prick testing and follow up).

My poor little boy. What specifically should I be asking for? Paeds have discharged us as he no longer has reflux, nor is he on medication.

OP posts:

ShovingLeopard · 16/12/2018 00:21

I would agree with others that it sounds like there is at least one other thing in his diet that he is intolerant to.

The 'big four' are dairy, soya, egg and gluten. Have you tried also eliminating egg and gluten (I know!) and seeing what happens? It could be something else, though (or multiple things....). My DD is gluten, soy and dairy intolerant, but the food that causes the worst issues is grape. Go figure.

The tricky thing is that intolerances don't show up on skin prick tests, you can only discover if a food is a problem by eliminating it and seeing if symptoms go, then adding it back in and seeing if they return.

The paediatrician's idea that his poo won't be formed because he is dairy free is utter bullshit. Many, many people are diary free and they most assuredly do not all have unformed poo. An unidentified intolerance could well be causing the loose stools, however.

shouldwestayorshouldwego · 16/12/2018 06:06

Are you SURE that cooked soya is ok? Plus intolerance can change I know someone who was fine with soya for years but not any more. I would start with getting rid of cooked soya and if after a week still not ok consider gluten as well. Has he been tested for coeliacs? Try to get that done before you eliminate gluten. He might be ok long-term just needs a few months to recover.

Rosalise · 16/12/2018 06:57

Sorry if my input is a bit long-winded but I hope it might be helpful.
My son had a similar problem. We didn't initially get any help from doctors but eventually discovered that he had a sensitivity to wheat as opposed to being coeliac.
How we discovered this was by creating a food diary and listing absolutely everything he ate. We had three weeks of only vegetables, white rice, fish and chicken. His diarrhoea stopped almost immediately. I think the three weeks was to allow his body to heal before reintroducing potential allergens. Then we had to add foods back one at a time at two-day intervals. As soon as we added wheat his symptoms returned.
Every six months or so he had to try eating wheat again but the problems returned, until maybe six or seven years later when he could eat bread again.
He was discharged from the specialist clinic but we were warned that he should restrict his wheat intake to the equivalent of one slice of bread a day and be prepared for a repeat of symptoms if he was under stress, such as at exams times, which was exactly what happened.
The method we were advised to use was along these lines: www.nhs.uk/conditions/food-intolerance/

Original poster

ThatPlanWorked · 16/12/2018 08:47

I do query gluten intolerance. Is it safe to eliminate food types without doctors say so or am I best pushing on at the docs and waiting for their say so?
It’s ‘good’ in a strange way to be told by you all that I’m not a crazy neurotic mother and that this isn’t normal. Thank you so much

OP posts:

coatsandats · 16/12/2018 09:02

To echo what Rosalise said above, you just need to do an elimination diet and a food diary. That will give you more accurate and useful information than £680 quid skin prick tests. I was advised to do that by a paediatrician and then a paediatrician who specialises in allergies and intolerances, and my baby was less than a year old at that point. You absolutely don't need to wait for permission from a doctor as long as you don't just continue to give your child a severely restricted diet for no reason, of course! The link above is useful.

If a full elimination diet seems to difficult to manage, you can keep a detailed food diary and e.g cut out one major allergen per week or fortnight (e.g no wheat for two weeks) and see. You might get lucky and find it's obvious quite quickly. The downside of that is if it's something quite random (like grapes!) you won't discover it easily.

You can always give him multivitamin drops etc as well in the meantime, just make sure they don't contain any allergens (some have - I can't remember which ones but I know there's some my child can't have).

Good luck!

Rosalise · 16/12/2018 12:51

I agree with coatsanddats. Our GP gave us an A4 sheet of paper telling us what to do and suggested we went back in six weeks IIRC. The whole family went on a soup diet with rice crispies, porridge or corn flakes for breakfast. It's some time ago now and rice, corn and oats weren't common allergens in the UK but I wouldn't know if that's changed since then.

My son hadn't started school so lunch for him was more soup with lots of potatoes in it. Even now, soup is his favourite thing because of how good it made him feel.

In fact we all felt wonderful on the restricted diet, healthy and full of energy. It was nothing like as bad as I'd expected, actually quick and easy to shop for and throw it into a pan.

Rosalise · 16/12/2018 13:03

This is the closest I can find to the list we were given but as a US site they are limiting corn because it's such a common additive in the States that it comes high on the potential allergen list. global.oup.com/us/companion.websites/9780195371109/pdf/00_Mullin_Appendix_3.pdf

Original poster

ThatPlanWorked · 16/12/2018 23:29

Thanks all. I’m on a mission! How long should I eliminate before trying to re-introduce?

OP posts:

JiltedJohnsJulie · 17/12/2018 15:48

You’d have to give it a minimum of 2 weeks of being completely DF, without any slip ups as a minimum I would think. If it is CMPA it’ll take at least 2 weeks for his gut to heal.

Original poster

ThatPlanWorked · 17/12/2018 19:30

Hi we’re already dairy free as DS has a CMPA diagnosis already. I have heard gluten takes a long time to clear out

OP posts:

FoofFighter · 17/12/2018 20:59

If you are thinking gluten do not exclude without GP input as the testing for it needs them to be taking it.

Original poster

ThatPlanWorked · 18/12/2018 08:17

I thought that too, had a conversation with the GP who just said ‘cut it out and see’ with a bit of a shrug. Doesn’t seem right to me

OP posts:

shouldwestayorshouldwego · 18/12/2018 09:26

I would definitely want a coeliac blood test before you cut out gluten. It could 'just' be an intolerance but if there is an improvement then it won't be clear whether it is coeliacs or intolerance and whether gluten could ever be reintroduced.

coatsandats · 18/12/2018 17:49

That's a good point. You can only test f or coeliac when gluten has been consumed for a long period (6 weeks? I think?) so if you wanted to rule out coeliac vs intolerance it would be convenient for you to get a blood test first.

However, if the doctors won't do a coeliac test, I would just go ahead and cut gluten out and see what he is like in a few weeks. If gluten is the problem, then at least you'll know. You can investigate coeliac vs intolerance further down the line.

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