Coeliac flare up in teenager daughter

[Leafy2018]

Hi,

Our daughter is 13, been diagnosed over 6 years and has had very few problems since then. Growing well, weight fine. Over the last month or so she has started suffering stomach pains whilst or shortly after eating and loose stools (sometimes yellow and floating). We are extremely careful as a family and manage her condition very well. I'm really concerned about this development after so long being well. The GP is seeing her on Monday but can anyone share any experience here? GP did say that starting periods can cause an upset with hormones etc - she stated them 18 months ago.

I'm driving myself frantic with worry that it's refractory and she's going to get the rare type of cancer that comes with it. I know I'm being silly but I just can't understand why she would have a flare up like this.

Thank you.

Bump in the hope someone can help

Is it possible that something that she eats fairly regularly is no longer safe for her to eat?

My relative was on the point of being diagnosed with refractory when he came to visit for a few days. I'm always pedantically careful when he comes, including buying new jars of jam etc. I check everything against the Coeliac Society app. Which is how I discovered that Marmite, which he had been eating every day, is no longer approved by the CS.

I don't remember whether the recipe has changed or the CS has changed their mind about it. But he cut out Marmite and his symptoms subsided.

I would be surprised but we have had some unsliced bread over the last few weeks and, although we are RELIGIOUS about wiping sides and cross contamination, it could be that at a stretch. She's also tried some new crisps from Sainsbury's (suitable) but maybe they are causing problems. We always use a spoon with jam and we have separate butter etc The whole family eats gluten free for family mealtimes. I'm glad your relative was ok in the end. I have read that it's almost never detected in children and nearly always over 50s, so hopefully it's not that. Thank you for your reply.

Might dairy be the problem, I think there can be links between coeliac and lactose intolerance.

Does your daughter eat oats? I cannot tolerate them even gluten free ones and a lot of gluten free foods especially cakes contain oats. Another one is bananas, a lot of people with the disease can't tolerate them. Your daughter could try eating very plain food and then introduce one thing at a time to see what is affecting her

Slight aside, but have you seen the gluten free cup.of tea blog and her cookbook. Best GF recipe book i have found. Tastes good and no weird ingredients

@Zebee I've also wondered this. Would it suddenly become a problem after 6 years though? She's been fine up until now other than the very occasional upset stomach. The only other thing I can think of is stress which has caused a dairy issue or similar. She's not been having a very nice time at school (before lockdown and upon going back.)

@Henio she does eat gf oats, yes. We introduced them after a year of being gluten free and she has been fine on them. Can you suddenly not tolerate them? She doesn't really eat bananas unless they were in something else like banana bread which would be rarely. Thanks for your reply. She is currently having some eggs on toast (gf/dairy free) for breakfast so we'll see what happens.

Hi - she's not 'cheating' at all is she? I ask this as a coeliac myself - I struggled in the first couple of years and when I was miserable I sometimes cheated, knowing it would make me ill, but not caring...

I know she was diagnosed a long time ago, but teenage hormones are powerful and this would be a way to rebel?

@imayhavelostmymarbles Yes! But thank you! We pre ordered that book and got signed copy for our daughter! We love it! Totally agree - appealing and easy with no silly ingredients to languish at the back of the cupboard!

@DottyDotAgain Thanks for your reply. No, I highly, highly doubt it. She takes it very seriously and has a fear of being sick. She can't understand why people are doing that on TikTok etc I almost wish I could say that might be it.

Eggs on gf/milk free toast with no butter have resulted in sharp stomach pains

Oh no Is she under a coeliac serivce, or go back to the GP and ask for a referral.

Poor thing - not fair to have problems like this after all this time. I'm a bit IBS-y, but not all the time. Sounds like more tests are needed to try and find the answer.

Ask for a stool test. If you hadn't said she was coeliac, the first thing that sprang to mind was giardiasis.

I've had bother with Sainsbury's bread before - not for a while, but we don't get Sainsbury's branded gf bread or rolls any more.

Obviously, I mean explore the options with her coeliac disease, as the more obvious cause, but there are other things that could be going on.
Also, check the FSA website incase there has been a recall for any products she eats regularly, particularly if you e. g. buy bread a few packs at a time and freeze it, so using the same batch for a while.

Just because she's coeliac doesn't mean that gluten (or CD) is at the root of every problem. It's a common trap to fall into and crops up a lot on the CD FB groups. Wait until you speak to the GP. Do not make any sudden changes to diet, etc. until you've spoken to a medical professional.

Stress. Anxiety?

I developed coeliac a few years back, and could never tolerate even GF oats. More recently I've started having a reaction to corn (maize flour, corn starch, mains starch etc) which is in virtually all GF food (and much processed food). My reaction to it is very similar to as if I've been glutened although not as long lived. Might be worth eliminating corn from her diet (and any other likely offenders, eg oats) and see.

There's also a great phone line for coeliac U.K. where they have dietitians available to talk to. At least they had that service a couple of years back, hopefully it's still going.

Meant to say corn is in most GF substitutes, not food (obvs)

Thank you so much for the further replies. Our dd has been stressed recently as she has been having a bad time at school with some bullying issues and was also very anxious about Covid testing (that part ok now). I've also wondered if it's related to stress but can't see why it would cause yellow floating stools again?

Good suggestions re phoning Coeliac UK and asking for a stool sample to be done. We haven't been anywhere so find it unlikely is that but you never know. Have some lactose free milk etc arriving tomorrow so maybe that will help as I've read a few times that it's a good idea if you've had a flair up.

Doctors in the evening so I'll wait to see what they suggest. Thanks so much for replying.