Coeliac test negative but suspected CMPA - where do I go from here?

[serenfach1]

It's been a very odd journey with my LO who is now just 17 months. I'll be as succinct as possible. To be honest I feel like it's all a mess - we (I as primary caregiver) didn't navigate things very well because of exhaustion and for a lot of the time unable to think clearly and do things well.

• Breastfed for 15 months - no suspected CMPA at the start.
• Started weaning at 6 months. Felt like his night sleep went to pot at the same time and continued to be bad for months. Lots of bad nights with wind, screaming, writhing, crunching legs.
• Since then we've cut out cheese/ milk and gluten twice.
• Cut out dairy at 10 months and then reintroduced (in no scientific way at around 13. months).
• Got referral for coeliac at 14 months and had to go back on a gluten to test for it. Ended up being on gluten diet for 2.5 months before coeliac test.
• From around 15.5 months dirty nappies were 4 or 5 times a day - often explosive - e.g i heard him do big farts + poo. Always very wet. Hard to tell but I don't think they were pale like the telltale sign of coeliac.
• Because of explosiveness decided to take him off dairy again (second time round). But wasn't sure if frequent poos was a sign of gluten intolerance which was building up in his body.
• Felt like sleep improved once off dairy - eg. less night wakings and screaming, wind, writhing around. But maybe it was coincidence and the reason for going mental at night was just teething or development stuff or who knows what.
• Had blood test for coeliac 2 weeks ago - got told results would take 2 weeks, and on advice of hospital went gluten free again (second time gf).
• Called doctors today for test results and all showed normal, so no coeliac disease detected (they came back within 1 working day so kind of feel like I've put him on a gluten free for longer than necessary! Grrrrrr!)
• So currently, he's GF and dairy free, but now I want to introduce gluten again and I want to introduce dairy again, but I can't work out how to approach reintroducing. I'm worried too much gluten in one go will backfire, likewise for dairy, but if he doesn't need to cut out either than obviously I'd like his diet to include both.
• Can't get doctor appointment to discuss until 5th December :(
• Don't rate my Health Visitor and don't think she can offer much advice anyway.

Anyone got any advice on how best to reintroduce safely, sensibly and in a way that'll help work out whether gluten or milk/ cheese etc is an issue for my child?

Thanks for getting to the end! Advice gratefully received.

Personally I wouldn't introduce both at the same time.

Gluten Allergies are rarer than Dairy Allergies do maybe introduce that first?

Have you been referred to the Allergy Clinic and a Paediatric Dietitian?

I'm a similar situation with my toddler, have been tested for coeliac but still having issues & now been referred to a paediatric gastroenterologist to find out what is going on. We did speak to a paediatric dietitian but they were confident that no support was needed so can't offer advice there. Like you, we had to reintroduce gluten for coeliac test, however, as we noticed no difference whilst waiting for the test, continued with gluten in diet. Personally I would reintroduce that first as the NHS recommends not cutting out gluten unless an allergy/intolerance has been identified.
For reintroducing dairy we did it very slowly and did a makeshift milk ladder. So, small amount of cheese or butter in something cooked, then a little cheese uncooked, then built up to a little bit of yogurt, to building up to having milk in cereal etc. I think we did the dairy over the course of a month or so.
I would keep a symptom diary and see how the symptoms fluctuate. However, with DD there really is no pattern and still dealing with daily explosions. Have you had to submit stool samples?

Thanks for your replies! I'm glad I'm thinking the same as your advice. I've decided to give one portion of either cereal, toast or pasta a day for breakfast or lunch and then monitor the response. Getting him back on gluten more important IMO than dairy as I've heard the milk ladder is easier to do even after a long while. So far, so good.

No referral. I don't hold out much hope. I'll bumble on as best I can until I get to speak to the doctor in a couple of weeks.

I'd go with breakfast on a weekday then of there is an issue you've got time to get medical attention before the evening

As above re introduce gluten first and keep dairy free until you have established all ok with gluten.

My son had CMPA from 5 months until he was about 3. We introduced dairy via the 12 step milk ladder, starting with malt biscuit so this had a tiny amount of dried skimmed milk. Each step took a week, so a malted biscuit once a day for a week, no reaction, move into the next step. If you reach a step where their reaction comes back you stop there. They can usually tolerate anything up to that point, and then try again 6 months later. I think I was told they should be completely dairy free for 6 months before starting the ladder. Hope you find the culprit soon!

Why are you so focused on dairy or gluten? Why not egg, or soya or any other allergen? I'd be keeping a very clear food diary and taking things very slowly.

For what it’s worth, I am an old lady and have had health issues all my life. My suspected diet issue manifest in sudden extreme fatigue or outbreaks of very painful mouth ulcers and crusty sores around my mouth. In desperation I put myself on an extreme elimination diet called AIP, not recommending it for your toddlers), and this is what I have found out so far,
I’m intolerant of,
Gluten,
potatoes, tomatoes,
tree nuts,
rice cakes but not boiled rice
eggs.
Gluten free oats.
This week I’m trialling lentils, so far so good.
My advice would be, save up and get a proper skin test for allergies and intolerances. Cut out the endless waiting for the nutritionist to suggest all the things you’ve tried already. Or the paediatrician, or anyone else. Cut to the chase and either pay for or push for the allergy test. I wish I’d done that. I bloody love eggs!

Allergy tests won't show non-ige allergies.

What’s ige?

It's a fair comment about why I'm not considering other foods as possible triggers. I need to keep a food diary. I've really struggled to keep that up in the past.

Thank you @flowersintheattic for sharing. It's amazing how foods affect people so differently.

It's an immune response that will show in bloods for people who have a clinical allergy. But intolerances or allergies that present with gut issues and more general symptoms will not have the same immune response so will be negative for IgE.

Ige is how you react. So people with IGE reactions with have immediate symptoms and non-ige like me, will have more delayed symptoms. So if I eat dairy it will make me I'll but I'm not anaphylactic so won't die

We we’re referred to a dietitian due to CMPA. Surely you should have one too. Also soya is apparently as bad as dairy. Not sure if that helps. I’m still struggling with my 8 month old. He’s literally awake 8 times per night crying with intestinal gas so we’re on the exclusion diet bus with dietitian support. Unfortunately we seem to have to demand the hugs from our GP. full story below.

I was so sick of being fobbed off because he had nice skin, he was growing & he was happy through the day until he pood or vomited
I packed a bag took him to the gp & said if they didn’t do anything I would literally go straight to A&E. they admitted him to childrens ward, he ended up having his brain checked because of the strange movements & was eventually diagnosed with sandifers syndrome (basically severe reflux). He used to do a strange wiggle movement then wake up screaming with bulging eyes,
projectile vomit, at least 8 explosive poos per day with mucus. He screamed when he pood. He had a really fine sprinkling of tiny spots at times on his tummy. Refused tummy time screamed on lying down. Absolutely full of wind. Apparently this was all normal & it was just immature bowel. Later on I demanded a poo test because gaviscon helped the reflux but he still had poo trouble. They reluctantly gave me a poo sample pot saying they were only doing it for peace of mind because the pictures of the nappies were normal, 5 days later a very apologetic GP called, sure enough blood in his poo. My baby had been in pain & bleeding inside for 5 months of his life because he basically had nice skin. Nothing can make this better moral of this story, demand, get several opinions & don’t give up. Ask for a poo test & a prescription for Aptamil pepti & a referral to a dietitian or paediatrics.
If you breast feed go dairy free yourself but it will take up to 3 weeks for improvement. My little one is 8 months now. He’s gone from 2nd to 9th percentile since stopping dairy. He’s a lot more comfortable but still wakes with bum wind so we’re now trying to work out why. Good luck.