Ds with ARFID is lactose intolerant. Wtf now?

[ARFID]

Ds is 13. He has very few foods that he’ll eat, his paed commented that the fact that he drinks milk has kept him at a healthy weight.

Over the last few months it’s become apparent that he’s lactose intolerant. Drinking milk gives him tummy ache and makes him feel sick. This isn’t officially diagnosed, but he’s had a couple of days avoiding milk and feels great, but starving and doesn’t know what to eat.

His usual foods are chicken wings or thighs, cereal with milk, pasta with cheese, one particular brand of pizza. Obviously he’ll eat McDonald’s, but doesn’t go very often. Those are all safe foods, but he has to really fancy something to eat it.

He picks at meals so is hungry a lot, and makes up for that with milk.

After a few days of no milk he’s pain free but starving. He tried a pizza but is in pain again.
He wants to try cheesey pasta as he’s read that some people can tolerate hard cheese like cheddar.

Just wondered if anyone has any ideas of things to offer? I’m going to get him some lactofree milk to try. Just looking for ideas we can try?

Can you speak to a dietian?
Dc is gluten intolerant and has afrid so I understand your concerns.
Dc has been tube fed for 7 years now (eats solid food as well) but it has meant maintaining weight and growing (which was a big issue). Dc was 13 when had first tube fitted. The dietian also worked with dc to build on the list of safe foods. So dc wrote a list of foods they'd like to be able to eat and each week tried one of these new foods, if it was tolerable I'd then make it every day for a week and then after the week if still OK with the food it would be added to the list of safe foods if not would never be mentioned again. One of the big things was adding in different brands (eg pizza), the dietian put it to dc as needed a back up plan incase the safe food got changed/stopped being produced. It was a long hard slog, a bit of a tightrope walk as I was worried about pushing too much but it helped that the dietian was involved and that dc wanted to increase the foods to reduce reliance on tube feeds and feel healthy. Having aims and dc being a teenager and understanding more really helped. Dc was also given art therapy alongside this which helped.

The paed won’t refer ds to a dietician as he’s not underweight.
I try to add new things, since being home educated he’s more willing to try stuff but doesn’t often like any of it. I think I need to up my efforts on this front!
He likes homemade pizzas as well, so if he can tolerate hard cheese that’s something I can make and freeze easily.

You can get lactofree cheese. Would DS be willing to try some of the milk alternatives?

In some areas, you can self refer to dietetics. If you can’t I would speak to the GP. Someone with ARFID and a lactose intolerance should have their input.

He’s tried lactofree milk and is fine with it, although he’s not ready to try it with cereal yet.

I’m going on a hunt to find lactofree cheese today.

I’ll give the gp a ring this week and ask for referral.

Thank you!

If the GP won’t help, the other people to try is the school nursing service - they still have responsibility for DS even though he is EHE.

Is it definitely the lactose he's having issues with and not the protein?

You can get tablets to counter the effects of the lactose I think.

My DD was a "picky eater" was probably bordering on ARFID when she was young. It was agony trying to get her to eat. Here are a few things:

Pasta I would boil with vegetables in the water so that it would absorb the vitamins
Sea bass
Noodles
Pancakes

How are you both now @ARFID?

He’s doing ok. He’s accepted lactofree milk thankfully!
He won’t try any cheese.
I’ve contacted the gp 3 times now to discuss and see if he can be referred but apparently this is not urgent so I keep being pushed back. I’m going to try again this week.

I’ve no idea about whether it’s the protein. If he can tolerate lactose free milk I’d assume that it’s ok?

I bought some tablets that promise to help digest lactose, which would make life much simpler, but they’re “delicious raspberry flavoured chewable tablets” and he can’t be in the same room as the smell of them so the search continues!

Would GP help with some more tests for pin down whether it's a milk protein or lactose reaction? It's a "smaller" request than a referral so they might be more amenable. And it would give you and DS maybe a bit more confidence on what he's eating day to day, while you are working on getting a dietician involved.

Consider asking for a coeliac screen too. Lactose intolerance can be a temporary symptom of undiagnosed coeliac disease or gluten intolerance, which resolves when wheat is eliminated from the diet. The bigger point, I suppose, is are there any other relevant tests that GP could order without waiting months and getting past the gatekeeper for referral.

Thank you, I’ll ask (if I ever have the chance to!).

Would GP help with some more tests for pin down whether it's a milk protein or lactose reaction?

I didn't know there were tests for non-Ige CMPA? Not sure about tests for non-Ige Lactose allergy, that's not something that's ever bothered me.

I suspect by now you've found them but...

Lactojoy. They're small, white standard tablets with a very slight chalky taste. They work.

He's right about hard cheeses, particularly if cooked like on pizza.

Watch out for 'whey' additives in things - they're lethal for lactose intolerance.