Celiac disease

[LilacRose30]

My DD (6 yo) has been diagnosed as being celiac back in May this year following a blood test for heartburn that she suffered for 14 months (her numbers were so high that biopsy wasn’t necessary).

Reason for posting is that my DS (8) has just been tested but results have come back as inconclusive and he is being referred to Bristol childrens hospital for possible biopsy of his stomach +/- repeat celiac screen. The consultant spoke to my DH and said his numbers weren’t overly high (my daughters were like 250+ and she was so positive it couldn’t be denied), but that she has referred us to Bristol.

DS has always been sensitive to weetabix (literally pooped in his shoes several times at school after having it!) and has episodes of tummy aches that can last a week or more, as well as diarrhoea. He seems ok with bread / pasta etc.

I was wondering if anyone was in the same boat with diagnosing celiac disease through endoscopy? I used to work in that dept years ago and it was traumatic for patients but DS would be under GA. I’m just worried about him as he hates blood tests anyway!

Also, my DD is still getting heartburn despite following the gluten free diet (she developed heartburn after a nasty bug back in Feb 2021 and had it until I pushed for bloods back in March 2022). I was going to speak with consultant about this but is this normal? We are careful about cross contamination and I can’t think of why she should have symptoms this evening when I’m really careful about what comes into contact with her food.

Thank you for making it this far! Advice of any kind would be gratefully received!

My ds has been tested multiple times but you have to be eating a reasonable amount of gluten for it to get picked up in the blood test and he couldn’t do that. We didn’t go for the biopsy but we were advised to go completely gluten free for 6 weeks and see if it made a difference to his symptoms, it did. In fact, if he eats a small amount of gluten now he breaks out in the rash associated with celiac and has had to be hospitalised because of the intense stomach pains he gets.

After much initial resistance to giving up all gluten he now will not touch it because he knows how I’ll he’ll feel afterwards. So no concrete diagnosis but our gp is satisfied he has celiac because of his symptoms and we have a family history with other members of our family who have had it picked up in the blood test.

Re school, get in touch with your local school nurse - hard to find but they do exist! She will be able to arrange training for staff regarding cross-contamination and food safety. They really should know better!

Damage from gluten exposure takes a long time to recover from, and can cause sensitivity to dairy. If the carbonara is an issue it may be down to the dairy due to damage to her stomach. Keeping a food diary and noting symptoms could help if you can't face going dairy free - the best option but not always practical!

I'm coeliac and there's something in some types of gluten free bread that gives me heartburn.

Unbelievable on the part of the school.

At this point I'd be pointing out:

If it wasn't coeliac but anaphylaxis they could have been dealing with a dead child

They may feel they are minor mixups but:
It results in your DD being in constant pain
This affects her ability to learn
It leads to her growth being stunted
In the long term their continuing exposing her to gluten is causing her an increased risk of cancer at a young age

Doesn't seem just like a parent fussing now does it?

Some of the GF stuff that is safe fir the majority of coeliacs has GF oat flour in. We had to avoid this for at least a year then introduce it very slowly.

We had a complete side of the kitchen GF - we used Lurpak for DH and Anchor for DS so we never got confused. All cooking at home was GF so no concern there.

Have you got the school nurse involved ? The chef ? I had meetings with both when DS was diagnosed

Are you using wooden or plastic chopping boads, cups, utensils, plates etc. Wood is a no no and plastic only if gone through dishwasher. We were fine with toaster bags, separate slots and not used at the same time.

Things to watch
dried fruit - for some reason often contaminated
oats - have a protein similar to gluten
barley - in more things than you realise eg vinegar
bread - my coeliac husband reacts to some gf breads
crisps - DH has found he can only trust walkers ready salted

If you were to all go gluten free it would be easier to prevent cross contamination but I certainly wouldn’t have normal flour in the kitchen as it flys everywhere.

Oh and be very careful about double dipping things like butter, jam etc as they are easily contaminated.

As a long time coeliac I would recommend getting advice from Coeliac UK they are the experts and can help.

Does she have dairy? Celiac can knacker the part of the digestion that secretes lactase, the enzyme that digests lactose. You could try buying Lactofree milk to see whether that helps. It might also help your DS as well.

It's taken about a year of being totally GF/almost entirely DF (I have ewes' and goats' milk cheese without problems - my pecorino will only be removed from my cold, dead hands) for me to not have random reactions at home - DP did the 'one side of the toaster for you, one side for me' until it was clear I was still getting glutened occasionally, despite his best efforts with separate boards, knives, and separate peanut butter jars. I never eat food that hasn't been prepared by either myself or by DP either, as it's clear that people just don't care/understand that GF isn't a sodding diet fad and things still get cross contaminated.

I also feel sick/get heartburn when I have products that contain palm oil - no idea if that's due to celiac or just another irritating thing.

Hopefully, you'll get a definitive answer, but once they've completed tests, you can still go GF at home, whatever the outcome - if he doesn't have celiac, it won't hurt him to have GF biscuits and pasta and if there's not quite enough in his numbers to make it unequivocal, it might still help reduce symptoms. But only after they've completed their investigations.

The only bread I can eat is Schar. Haven’t managed to track down the culprit in the other brands. I thought milk powder but it’s not in all of them.

Also it’s far easier to keep a 99% gluten-free household. So everything home-cooked is gf, then keep any non-gf bread etc. in a separate area.

Your ds does have to keep eating gluten until diagnosis is pinned down so don't go gluten free just yet. Members of my family were diagnosed as coeliac following endoscopy. I had to then have that but really it was totally stress free as l was sedated for a short while and absolutely no discomfort. I was not coeliac but have a hiatus hernia which causes reflux. It might be good for your dh to have an endoscopy too as he is showing some symptoms and you would wonder have your dc inherited this from one side of the family. It is quite prevalent in my family with some getting quite late diagnosis.
Wondering if your family have any lrish connection as l have heard the lrish has the highest rate.

None of the walkers crisps are ok for coeliacs - there's a bit on the walkers page stating this. That aside most of the supermarket own brand crisps are ok and seabrooks are too.

Definitely get new separate toaster bread boatd bread knife
Separate butter

It took 18 months for dd number to be totally clear

Get tge stickers
Buy new pots if butter jam nutella and label and be strict
www.keepitglutenfree.co.uk/

www.labelsonline.co.uk/gluten-free-stickers-25mm?gclid=Cj0KCQjw5ZSWBhCVARIsALERCvwVgadVOm7XdKAL4smFV_LH3SUvkoSgpGDMuDQ21WPF52j8HIhh020aAkSQEALw_wcB

That’s really odd as I do have Irish ancestry in my mums side! DH has hiatus hernia and stenosed sphincter but not celiac (his last endoscopy was this Monday just gone). I’m not celiac but my paternal aunt is.

We have gluten free pasta at home for all of us as it’s actually nicer than normal pasta! DD has her own bread (it has lots of seeds in it) and is gluten free and the only bread she’s actually ever loved! It’s nearly £3 a loaf though 🤦🏻‍♀️

Yes, I got rid of all the normal flour in our house.

Weve checked crisps and she can have PomBeard, Tesco own brand and Sainsburys one brand, as well as golden wonder I believe?

DD is so sensible for a 6 yo, she knows to ask if something has gluten in it beforehand.

DS loves all gluten free food so hopefully he should adapt quickly if he does have CD.

thank you for advice 🙂

@LilacRose30 seabrooks are ok, Aldi and Lidl own brand are normally ok. Aldi or Lidl (not sure ) do their own brand Pringles as well. Join the coeliac Facebook groups, there's lots if tips. Our 'go to' if out is mcd - Big Mac without the bun, or we've only just been brave enough to try subway (but had a good experience and really clued up on cross contamination)

We have a local Facebook group as well so people suggest restaurants etc

Join coeluac uk assuming you in uk
Local grouos used to organize kids events

In lreland you can claim money spent on special gluten free food against tax. Is there anything like that in the UK as expense is involved?

Nope ! A very very few areas still do prescription food but few and far between