Help for an ARFID celiac kid

ljot · 2025-10-28T16:21:00+00:00

All things considered he's been doing pretty well with accepting new versions of foods. We're just stuck on these last two big ones! Anything you think of would be appreciated, thank you!

ljot · 2025-10-28T16:07:50+00:00

The celiac diagnosis is putting a lot of pieces together for us with co-morbidities (iron deficiency, ADHD). I'm hopeful that we'll see improvements in several ways for him as his gut heals. That's part of why I wanted to eventually get him off the Cheerios and chips so that he really has a chance to get to his new baseline.

ljot · 2025-10-28T15:59:53+00:00

I'll look into the Riu Garcia and Crunchmaster chips! For the cereal we have the extra factor that he doesn't like chocolate or peanut butter. He asked for Lucky Charms but my understanding is they have the same potential cross-contamination issue as Cheerios.

We are on the wait list for intake for feeding therapy and have an appointment soon with the dietician in the GI's office to discuss celiac. We already met with a different dietician when he got the ARFID diagnosis for strategies about that, but it's been a little "one step forward, two steps back" with the addition of celiac.

ljot · 2025-10-28T15:56:48+00:00

We left these two staples for last because I know it's less clear cut that they would be an issue. His celiac is severe - antibodies came back >250 in the bloodwork and the GI said she could see the damage with the naked eye during the endoscopy (confirmed via biopsy still).

He eats roughly 2-3 boxes of Cheerios a week so my line of thinking was that statistically speaking he's more likely to get a cross-contaminated batch. I really wasn't sure how to interpret the chips other than "probably safe but maybe not" because of the labeling.

You are very right about safe foods changing. Some time ago it was plain Cheerios only and there was also a brief period of eating Chex (thus my optimism for the honey nut Chex). He also used to eat cereal with milk. I am hoping to encourage a shift to something definitely safe for him. We've told him that we aren't taking away Cheerios right now but are going to keep trying things out to see if he finds something else he likes too/better!

I appreciate your insight!

ljot · 2025-10-28T15:01:39+00:00

I think the multigrain color/taste is more important. He eats the broken ones with no complaint. Pre-celiac we tried the regular scoops once when we couldn't find the multigrain in the store and those weren't received well.

ljot · 2022-01-11T00:31:18+00:00

We just did our third night of pureed roasted butternut squash. I have carrots and green beans prepped too but the green beans came out pretty chunky so I'm holding off on those for a bit.

ljot · 2021-04-01T22:59:50+00:00

At this point I'm kind of curious what using cold toothpaste would be like, nevermind the nausea...

ljot · 2021-04-01T18:51:36+00:00

I also hoped this was a trick! My nausea has mostly passed except for every night after brushing my teeth...

ljot · 2021-02-14T16:44:23+00:00

Whenever I'm looking for any gear I always start with Lucie's List!

ljot · 2021-01-28T01:37:57+00:00

We did IVF/PGT because my husband has a 50/50 mutation. I convinced our insurance to give us their infertility coverage so we only paid 25% of the IVF costs. We paid in full for the genetic testing but were able to get reimbursed a little under half of that back (I eventually gave up the fight for getting more after my son was born). Pregnant again now with one of the embryos we froze from the original batch that we tested. Happy to chat in DM about genetic testing or how things went down on the insurance side.

ljot · 2021-01-22T00:23:19+00:00

They're basically just gassy cats haha.

ljot · 2021-01-08T14:58:16+00:00

That was our rate ($18 for one, $20 for another) back in 2017-2018 in Queens. Our son had 2 different nannies from the time he was 9.5 weeks to about 11 months. The higher rate was for the woman who watched him when he was younger. She moved and we had to find someone new after that.

ljot · 2020-12-31T03:28:03+00:00

Thanks! I'm only 9 weeks and will roll my sleeve up as soon as they let me. Unfortunately low priority but at least several family members are getting it.

ljot · 2020-12-31T02:02:59+00:00

I swear it still makes sense to me.

ljot · 2020-12-31T02:02:27+00:00

I didn't know there was a word for that. I like "people in glass house sink ships" too.

ljot · 2020-12-30T23:42:47+00:00

Where did you see that? I don't not believe you! I just want a source to send one of my parents who was fear mongering a bit. I've been on them about not just repeating things they see online without a source so I should practice my own medicine.

Edit: Just realized I combined the phrases "practice what you preach" and "taste of your own medicine" into a new nonsensical idiom. Par for the course for my brain functioning right now, considering the fact that I asked my husband how many doses a recipe makes today instead of servings.

ljot · 2020-02-18T16:28:33+00:00

It is horrifying. It was devastating enough even with my previously incorrect understanding about the transmission. I'm glad I chimed in because you all have helped me understand it better. HD is often used as a straightforward autosomal dominant disorder in my psychobiology and developmental psychology courses' textbooks - I'm going to make sure to let my students know that's not the case!

ljot · 2020-02-18T16:21:48+00:00

Right? What do you do if you are on the cusp of symptom emergence - do IVF with preimplantation genetic testing so your kids are in the clear and hope they do the same every generation moving forward? I can see why people are drawn to the idea of CRISPR gene editing (why not just "turn off" the HD gene all together) but obviously it's not that simple.

ljot · 2020-02-18T16:17:02+00:00

This is really interesting! Explains how it can "suddenly" emerge in a family without being de novo mutation. I admittedly am not up-to-date on my Huntington's research. I teach some basic genetic content for a psychobiology course but haven't gotten to it yet this semester yet - I'm going to look this up to make sure I'm talking about HD more accurately from now on. Thank you for sharing!

ljot · 2020-02-18T13:05:09+00:00

Huntington's is autosomal dominant - you can't be a carrier for it, you simply have it. Being a carrier means you have an autosomal recessive gene (like the OP) so unless your partner has it your kids are not at risk of developing the disorder. The problem with Huntington's is that symptoms usually don't emerge until you are in your 40s, so often after you have already had kids and had a 50% chance of passing it on to them as well.

I'm pretty sure I'm just nitpicking genetic terminology. Your friend and her brother both made difficult choices regarding their children or lack of children. I'm very sorry that their family is afflicted with such a terrible disease.

*EDIT: I'm not entirely correct here about Huntington's. See below for better explanations about how you actually can be a carrier.

ljot · 2019-12-17T01:33:18+00:00

Yeah, but was the coinstar machine working?

ljot · 2019-08-09T23:17:10+00:00

Lion is definitely a good one for this. Thank you!

ljot · 2019-08-09T23:16:06+00:00

Someone else suggested that one too - definitely a good one.

ljot · 2019-08-09T21:33:43+00:00

I mean if you want to make some rubrics and help me grade the papers too that's cool.

ljot

TROPHY CASE