Help me write a gluten bucket list for my son

[Prusik]

Slightly emotional post but we'll ignore that.

My son has coeliacs disease. He does, however, need to have six weeks on gluten prior to having a gut biopsy.

He's two.

Anyone fancy helping me write him a gluten bucket list? I start with garlic bread.

I'm aware this is more for me than him. My heart breaks for my little boy. It's going to be a tough six weeks with a very poorly boy but I want to make it fun so at least he can try some new things for the last time

My two youngest grandchildren both have coeliac disease and it was horrendous seeing them so poorly from gluten but having to give them it. The only consolation I would offer is that once off it, they were well within about 10 days and have been amazing since.

I'd say enjoy eating out, as it's bloody horrendous attempting to eat out with coeliacs. Most people seem to think it's a dietary choice rather than a necessity and I've lost count of the times DD has been in tears as they've been "glutened". Once was on one of their birthdays as a temp cook in a play centre cooked the gluten free food in the normal fryer.... poor darling spent her birthday vomiting and in agony .

Croissants, almond ones were my favourite
Kit kats, I quite miss them
Pies and pastries, sausage rolls

@Cwenthryth Sainsbury's do a crispy shredded chilli beef in their normal Chinese range that's gluten free.

Also @PragmaticWench Becky excel has a gluten free party ring recipe. glutenfreecuppatea.co.uk/2015/08/12/recipe-gluten-free-party-rings/

OP, I would be tempted just to keep it simple with stuff he already eats and likes. He's two, so he's going to grow up not knowing any different, and these days there are pretty good gluten free subs for most things except bread.

We've had the exact same issue here. Ds was 18 months when he had the biopsy done, which came back inconclusive (they didn't get enough tissue) by which time I'd taken him off gluten.
We tried to put him back in for a repeat biopsy, but he was so ill after less than a week that I couldn't carry on forcing him to eat stuff that was making him suffer, and so I made the decision to stop.
He's 12 now, and has a diagnosis of "Probably coeliacs, but untested", which has done fine. If he wants to pursue a diagnosis in the future he can do, but, apart from being unable to access help from the coeliacs society, it's never been an issue.

Just in case.

Genuine question! If it's 99% certainty he has coeliac disease and he's only two, why put him through it?
Couldn't you just keep him GF and then maybe do the biopsy when he's older and able to understand a bit more?
Is some stuff available on prescription still? Or is there a chance it could be something else and that's why you need the biopsy?

Without wanting to detail the thread - surely a gluten bucket list is meaner than making regular gluten-containing meals for these weeks, then blowing his mind with lovely gluten free food afterwards?

My DH was diagnosed as an adult and says that for him a bucket list therefore made sense, but he'd rather have just not known about how much tastier so many regular things could be. Especially some of the suggestions like party rings would worry me with a 2 year old, it can be hard for them to fully understand the risks, and then there's a higher chance that at some point in the future he'll be at a birthday and secretoy sneak one of the biscuits that he knows are delicious but was only allowed to try once ..

Fish and chips! I know a lot of places do GF options on certain nights but you can't beat a big greasy cod and a load of chips

pasta Thankyou!!!

I feel for you. I have two with coeliac and my youngest has severe autism and he doesn’t understand he can’t eat gluten. He’s 7. I’d go for Mac Donald’s, nice bread, crackers, cake, crisps, pizza.

As the diagnosis is 99% certain, could you keep him gluten free anyway, and reconsider a diagnostic gluten challenge when he is older? It seems a shame to put him through six weeks of being unwell if the end result will be going back on the gluten free diet he was on before?

If not, I'd enjoy eating out, as it's hard to be truly gluten free eating out in many restaurants (eg cross contamination).

'Though maybe if he's only 2yo do t give him anything new with gluten in. Because if he loves it and then can't have it in 6 weeks then he might struggle with it. But if there's stuff he's never had he won't miss it??'

This.

'Mmmm DS are you enjoying the doughnuts, pizza, Chinese buffet?? Shame you're never going to have it again!'.

That's terrible! Don't give him stuff he can't ever have again!

I'm really torn. I don't think he's got the understanding to know what he's missing. He's not the most emotionally mature two year old. Maybe I shouldn't. I dunno.

The doctor's are pushing for official diagnosis. I'm not sure whether delaying it is better. They said he needs support to get his bloods right and to heal but he'll only get it with a diagnosis

If you go GF you will never get a diagnosis as he won’t test positive for antibodies. He might be able to avoid biopsy if he has tested positive for the gene and has antibodies present (above 12) in his bloods. They changed the process a few years ago so children can avoid biopsy. Better to get it sorted now when he is little than wait as then a GF diet becomes normal and he won’t remember what he misses. Good luck.

I would continue with the diagnosis so they can track his recovery with blood tests. Some of my family can't have oats either, and this was only discovered through follow up work. Plus, you may get some foods on prescription (depending on your area).

I wouldn't delay the official diagnosis. The damage to the gut can have implications. The more damage the less easy it is to absorb stuff. So dd was badly anaemic and low vit d. She's also very short and kids with coeliac often don't grow to their full potential unless they cut gluten out. The damage to dd's villi has also caused lactose intolerance. If you think being gf is hard try having to cut out dairy as well! While being a vegetarian!

Prescriptions used to be brilliant, but they have really tightened up now and it’s really own certain flours and some bread. Hard for those on a low budget as GF food is more expensive.

We've had plenty of support etc over the years without a diagnosis, it's made no difference to ds's care.
At times, a diagnosis would be nice, but, honestly, it's not an issue.
For a few years, our pharmacist was ordering in the prescription foods for us, and we just bought them from him, rather than getting them on prescription, but there's so much available now in the supermarkets etc that even that's not an issue anymore.

Don’t delay. He sounds very like DS was. He will get the support he needs (as will you).

Will they not go on a blood test for his TTG levels alone? DS didn’t have the DNA test until after his diagnosis was confirmed and he didn’t need a biopsy, consultant was happy with his bloods alone.

It’s important as there are other health implications. Plus you should get a prescription for him for gf food. CoeliacUK have a buddy scheme which can be helpful, although it took me a while to be matched. PM me if you want more info.

God I miss doughnuts.
Soft lovely Tiger bread
Sausage rolls
I miss a good burger bap too 😔

I never went through with the endoscopy long story but the shorter version is Im a wuss but my bloods came back very high. So ever since I avoided gluten I got better.

If he's adapting at this age, he should be fine. I had to change at 22 🙈 it was not as straightforward as you'd think 😂😂

@PlinkPlink Tesco and Asda both do frozen mini donuts which are acceptable.

Sausage rolls I make my own using 'Maria's' pastry recipe and gluten free sausages.

He'll soon forget the gluten foods so I don't see the issue with doing a bucket list now. My daughter was diagnosed at 4.5 and that was tough because she was old enough to realise the difference in her diet but even then she got over it pretty quickly because she was so young.

I'd go for garlic bread, doughnuts, party rings, iced gems, fish and chips, battered anything really, profiteroles (although tesco does do fairly decent GF ones), all the nice breads really. Urgh I miss gluten (I was diagnosed at 21, beer is what I miss the most but you should probably skip that with a toddler!)

Unfortunately we need to do the 6 weeks of gluten as the antibodies were basically zero as they were done when he was all but gluten free. Its things like his iron levels (which apparently can't physically get any lower) that point to coeliacs. Alongside the gene testing and the symptoms when he does have gluten. We might be able to just do it with bloods. Regardless, it still has to be done.

Im digesting all advice, thankyou. Unfortunately we are a very low income family so the gf food is breaking the bank. Mostly I just make him some bread using things like coconut flour. We have also had to pay to get the testing we have had

There is quite a bit of GF food out there which is not explicitly marketed as “GF” but it is - most baked beans for example. We have found these are cheaper options rather than shopping only in the “Free From” section. CoeliacUK has a helpful app to check barcodes. When your son is diagnosed you will be prescribed flour so you can bake. It is worth getting the diagnosis as even small amounts of gluten can harm the gut. A diagnosis means dietician support and annual bloods. They also monitor height and weight.

White crusty bread!
I have coeliacs, I hope your ds is ok

Do it now, I have coeliac diease and a son who was diagnosed at the age of 3. He won't know any different if you do it now so he won't miss the nice food quite the same. Depending on which area you live in you can get gluten free bread and flour on prescription once he has a proper diagnosis. I wasn't diagnosed until I was 25 and that left me with microscopic colitis as a result.