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!

Sorry, forgot to say - DH and I are not celiac as have been tested following DD’s diagnosis.

My son had to have a biopsy as a toddler for coeliac disease he is now a thirty something! So a long time ago.
Have you checked labels, when my son has a recuurance of syptoms it has been traced back to manufacturers changing ingredients.

Two of my other sons have been tested, just blood ones though and came back negative but both continue to have stomach issues if they eat gluten in more than one meal a day.

Dd had an endoscopy for it when she was 16yo, under sedation rather than GA and she was ok. If your ds is having it done under GA he will be fine.

as well as coeliac disease her endoscopy diagnosed her with a hiatus hernia which means she’s more prone to heartburn. If your Dd is strictly gluten free then it must be something else causing the heartburn. Dd was later on diagnosed with EDS (which explains the hernia and ongoing digestion issues), I had to push for another referral to gastro and then rheumatology as I knew something wasn’t right.

You could also ask for a repeat blood test for your Dd to see what her numbers are like. If they’re raised then she’s getting gluten somewhere, if not raised then it’s something else.

Is she having gf oats ? We react to them if we have too many ?

My DS also gets really bad heartburn esp after milky things - have you kept a diary to see if it's worse after stuff ?

It takes a very long time for all gluten to leave your system and some people do react to oats. Between May and now is probably not enough time.

Is your home completely gluten free?

She doesn’t like oats (she’s very fussy so finding gluten free alternatives was a struggle). I have a celiac UK app to check ingredients and her dinner was carbonara and everything was checked on app and was celiac approved, although I didn’t read ingredient list as assumed the celiac app was correct.

The consultant we saw for DD said her stomach was fine and other bloods were fine, and it was the celiac disease causing the heartburn. She’s had her tummy felt lots (by Paeds consultants and GP) and they haven’t said it could be anything else, but strangely enough my DH has a big hiatus hernia (he had an OGD on Monday to check as his food gets stuck and he gets horrendous heartburn due to a stenosed sphincter in his stomach). I was thinking about calling celiac UK tomorrow to check about the heartburn, or should I just leave it for the minute? I could always call her consultant at hospital?

My DS loved oats (would always have porridge) but he hasn’t had it recently. He had 3 weeks of stomach pains in Feb - March but that was put down by GP as a bug.

im hoping his OGD will be under GA as my DH had sedation with his OGD but it didn’t work and they couldn’t even give him throat spray.

Sorry, his other bloods were fine just this celiac screen one that was inconclusive.

home isn’t gluten free as we had to all eat gluten for our testing following DDs diagnosis, but I use separate spreads for DD and separate side of toaster. We make sure that we use separate utensils too

You need a separate toaster, separate side isn’t good enough, the crumbs drop in. Separate butter? Jam?

And I wouldn’t rely on the app, not always up to date. You need to read ingredients for everything inc drinks. Even stuff like some spice jars can be a may contain.

Separate sides of toaster is not good enough to avoid cross contamination. Needs to be 2 toasters.

Plus also May to now is not a long time for all the gluten to go.

For reference, it took me/my digestive system close to 2 years to ‘recover’ from the effects of non-diagnosed coeliac disease in my teens. Admittedly, I was very unwell with it pre-diagnosis but this isn’t something that ‘repairs’ overnight.

Also agree, always check all ingredients directly on the packet as they are liable to change at short notice and your daughter should have a completely separate toaster etc.

OK, thank you for your advice. To be honest, we spoke with the dietitian after diagnosis and she said “just avoid gluten, eat more vegetable etc” and that was basically it.

We will get a new toaster - I did mention that to the dietitian and she said “that’s fine as long as no crumbs from normal bread go into it”!

she has her own peanut butter (doesn’t like butter) and I’ve written her name all over it.

if my DS is celiac I will ban gluten from the house!

also, the school DD goes to have actually given her gluten pasta AND garlic bread on separate occasions after I had told them she was celiac - the first time they “forgot” and didn’t tell me (DD did when she got home!) and second time the TA got confused with gluten free and dairy free…

I do appreciate all the replies - thank you!

We have one of those toasters that has 4 slots so we used the far left for “normal” bread and very far right for gluten free. DH read about toaster bags - would these be a good idea? Just thinking about getting a small travel toaster for her.

also thank you for advice re: celiac app. When DD was diagnosed we spent 2 hours walking around super market checking labels and the app seemed so much more convenient! Will be extra vigilant in future

I wouldn't go for a toaster bag. You need to think about a microscopic particle of gluten wafting across the toaster. Separate toasters is just going to be safest.

You’d be surprised where crumbs get to! Cross contamination can be an absolute pain. I think a completely separate toaster well away from your other one is probably a good start. Are you using separate bread boards etc? And cleaning down gluten crumbs etc properly - you’ll need a separate cloth to wipe down the gf boards. Other things to consider are separate baking trays for gf and non-gf when cooking and making sure the gf one is always above the gluten one in the oven When washing up, wash your gf stuff first, then then gluten stuff and then wash your dishcloths properly (I shove mine straight in the washing machine 😆)
I say all this as a very sensitive coeliac. Like your daughter, my bloods were through the roof and the biopsy showed I had little to no villi left. It took me a good two years to properly recover -I’ve been gf for 14 years now.

I’d also be tearing school a new one. I work in education and this is a complete safeguarding fail. Perhaps point out to them that it takes up to two years for a coeliac’s body to recover from a gluten exposure!

It does get easier! Soon it’ll be second nature.

if my DS is celiac I will ban gluten from the house!

Why for your DS and not your DD?

You need separate boards, wipe down all surfaces between GF and non GF products, proper storage (as mites can create cross contamination of GF and non GF products)

And always, always check labels - don't ever rely on anything else. Including restaurants - always ask for the allergen lists. It's a nightmare but honestly a little bit of gluten can cause huge issues in the future if it's repeated time and time again.

also, the school DD goes to have actually given her gluten pasta AND garlic bread on separate occasions after I had told them she was celiac - the first time they “forgot” and didn’t tell me (DD did when she got home!) and second time the TA got confused with gluten free and dairy free…

You need to raise this - not just for your daughter but for children with anaphylaxis - it could be fatal to them.

It's really tough the first few months but it does get easier and as your daughter starts to feel better she will get more on board with it.

My dd was the same when diagnosed, bad reflux and very burpy. We cut out dairy for a while so her tummy could recover from the damage. It lasted a few months, I guess while she recovered. She is fine now and has dairy again, only needed to cut it out for a few months

Thank you - it really is a pain and very much a learning curve! My DH gave the school a gluten free cake we had made for a cake sale just so DD could buy it back as I was certain there would be no gluten free things there for her. DH packaged it up with 2 bright yellow sticky note saying “DDs name / Gluten free!!! Cut with SEPARATE KNIFE” and told the TA this. Later on when it was the cake sale, I found they’d shoved gluten cupcakes (my friend made them so knew they were gluten) inside the cake tin with DDs cake!

we have flagged it with school time and again and are seriously thinking about pulling her out because they don’t seem to understand how serious it is. I’ve even called our dietitian to ask that she write directly to the school about it and I’ve given them copies of the consultants letters regarding her diagnosis

We still have gluten because DS was only recently tested and had to keep having gluten. It will go now because I don’t want to risk DD getting poorly.

Both DH and I have spoken with the head about 4 times each and it’s been passed to the SENDCO lead as apparently that’s her role? As soon as we had diagnosis we called them, spoke with reception and Head, gave them letters confirming diagnosis etc. Its been a nightmare!

I’d be sending Dd with a packed lunch to school as they’ve shown they can’t be trusted. What are their cross contamination procedures like in the kitchen?

It sounds like you've had a really, really hard time with it all to be honest and it does sound like school have been a nightmare.

Poor DD. And poor you (and DS)