**Parents of coeliac children**

[Blossomandblooms]

My DD was diagnosed as coeliac last April (2022) when she was 6. She was diagnosed via blood test, and her TTGA level was over 250. We started the GF diet and her main issues (headaches, heartburn and horrible stomach pains and diarrhoea) soon subsided. We saw the consultant in December and her TTGA level was down to 26.

Recently, she has been getting random episodes of diarrhoea and heartburn - literally before her diagnosis, the heartburn was around once per week, now it's probably once per 3 months. In the last few weeks however, she's had it 3 or 4 times.

I've spoken with the dietitian who has recommended that she has a blood test to check her gluten levels as she shouldn't be experiencing symptoms of glutening if she is GF. As a household, we are now GF as my DS is also coeliac (diagnosed after DD but never showed symptoms and he was diagnosed via OGD in Sept 22).

DD does have school dinners and we have been reassured countless times that the kitchens (who make and bring in the food to the school) are preparing it all in a separate area / it's all GF. Thinking back, I'm sure her symptoms started when she went back to school after Easter half term, but the school are adamant they are giving her GF food.

I know it can take up to 6 months for the gut to repair, but does anyone have experience of their VERY coeliac child still experiencing glutening type issues even after they go on a GF diet? We are very strict at home with GF but I don't know if perhaps because she was so poorly pre-diagnosis, that her gut is taking longer to heal? She has been GF for 13 months now. She has always had a bad tummy - when she was little she would have lots of diarrhoea (they classed her as having toddler's diarrhoea).

Nursery won’t sit my child at a table with another child who is eating gluten because of the tendency for food to travel via cutlery or mouths and contaminate. So any chance of something similar happening with your DD? Or has the school started using a different type of equipment with gluten in (eg play doh) etc that is causing contamination?

Is your dd fully on board as she could be accepting food from other children. I would consider sending a packed lunch to see if there is any improvement.
Also, have you cut out things like oats, vinegar, dried fruits as these give my coeliac husband symptoms.

Hi @TheSnowyOwl that's a really good point - I will ask the school. My DD does say that some children are messy eaters (they're 7) and get crumbs everywhere. I just feel so awful for her as it's like she's being ostracised if she can't eat with her friends, but coeliac is such a horrible thing to have to suffer. I will speak with the school as I know the risks of cross contamination are so high.

I found that a lot of people who think things are GF, don’t really understand and don’t understand what contamination really means.
its also quite common as your bowel heals to become much more sensitive so contamination becomes more of an issue.

@BonesBrennanz oh yes, my DD is amazingly good with it. She knows what she can / can't have and will always check with an adult first because she knows how poorly gluten makes her.

DH did give DD some of his french fries from Mcdonald's the other day - I'm sure we read somewhere that these are GF - is that right?

As soon as DD was diagnosed, I got rid of everything containing gluten and we downloaded the coeliac UK app, so know we always check against that and the ingredients list before we buy anything.

@HatchetJob too true - the school gave DD garlic bread because the TA got confused between gluten free and dairy free. They also gave her a big bowl of pasta and then remembered that she couldn't have it, but they didn't tell me because "she seemed fine". It frustrates me that so many people have no clue about coeliac disease - if it was a nut allergy I would've been called!

Personally a big bowl of pasta, or in fact one piece of pasta, would make my DD significantly unwell for weeks and weeks.
I think I would ask for a chat with them again to check some things, especially if blood tests come back with something.

Personally we wouldn’t eat anything from McDs, I know people do. I’d be careful if your DH had touched other food, if was stored in a bag with a burger. All a big no from here.

It’s amazing how many things have gluten free in big letters despite containing oats. Plus your average TA wouldn’t know to tell her she couldn’t have dried raisins. It’s so easy to slip up.

I would double check with school. Could you maybe do a trial of pack lunches and see if that helps (you shouldn't have to but might be worth it).
Dc1 was diagnosed aged 4 (after years of me being told its just toddler tummy/ftm anxiety). Went on to be diagnosed with refractory coeliac disease and is now medicated and tube fed and alot more stable (this is rare). Before we got to the stage of diagnosis we had lots of questioning re cross contamination, Food diaries, mri, colonoscopy, genetic bloods, immunology assessments, lots of trials of autoimmune drugs, supplements, build up drinks.

I am a coeliac and recently got diagnosed with lactose intolerance as well, apparently its really common for people with coeliac to have both, so maybe worth looking into as the symptoms are similar.

Oats don't contain gluten. As long as the product is made with certified gluten-free oats (which are harvested and processed separately from gluten-containing cereals), then it can be marked as safe for gluten-free diets.
However, many coeliacs can't eat oats as the protein in them is quite similar to gluten and causes a similar reaction. Many CAN eat them though.

Dried raisins? Why are they not suitable for coeliacs?

Do the school fry any of the food? If so are they using separate fryers? My DS school said the chios are gluten free but my DS had a bad tummy a couple of times after and we found out that other breaded items had been fried in the same oil and therefore may have been cross contamination. My DS stopped having school dinners and he has been fine ever since.

My dd was diagnosed a couple of years back.
After switching to gf, it took a short while for symptoms to go.
She has had a few episodes since which have been grim for her.

It's strange but I now know quickly if she has been glutened. Her skins starts to look "dusty" ghard to describe but there's something about the texture, she is v pale and also gets a v sweet sme. Her cramps start later and then it all kicks off with sore eyes and headache with brain fog. She literally sleeps for 48 hrs.

There's other times she has cramps and dirroreha and mouth ulcers for a few days, almost like a mini episode. These we can't work out. There's nothing we can identify in food or cross contamination. She's 16 and has done amazingly well with checking and becoming knowledgeable and rarely takes risks.

We are still learning about it and how it affects dd.
I get excited with research development updates for treatments come through from coeliac UK.

Factories use flour to dry them out so they don’t clump, most drops off so they don’t have to list it as an ingredient. You can buy gluten free dried fruit but is it quite expensive.

I can't offer anything on your situation, OP, but hoping I can benefit from those of you posting here.

A few of you have said your young children were initially told they had toddler diarrhoea before the celiac diagnosis. Was that their only symptom, and were they tested for celiac disease at the time? DS has always had horrific stools - loose, oddly coloured, undigested food, absolutely awful smells - and did have a blood test a year ago which I was told checked for celiac and was negative, and so the generic "toddler diarrhoea" diagnosis has been given by the GP after her discussing with the paeds consultant. He's been on loperamide for a few months and whilst it has reduced the frequency of his stools, the consistency is more often than not still the same (I can count on one hand the number of "sausages" he's produced).

We did an elimination diet for dairy and lactose with no effect. He does have a lot of wheat containing products - pretty much lives off pasta and bread at times - but can't remember whether he was accepting a more varied diet at the time of the test.

I never knew this and it makes alt if sense of why I get ill sometimes.

Also OP check they are not also wheat intolerant. Some of the products are gluten free but not wheat free as I've had the gluten removed by an enzyme. Yet me and DS still react pretty badly to this.
DS was also lactose intolerant which we didn't discover until later. He is now thankfully grown out of this.

I have coeliac disease and apart from wheat, I can’t tolerate gf oats, any nightshades, eggs or cashew nuts. It used to be just the gluten but I’ve become intolerant of the others too. Personally I wouldn’t eat any food prepared by an institution, there’s too many variables. Her gut is being constantly set back by these attacks.

Thanks everyone for your suggestions / experiences and feedback. Even though we have been on this path for the past 13 months, there's still so much to learn.

I've spoken with DH about the possibility of contamination at school with the same oil being used - I will speak with the school about this. I will more than likely look at giving her packed lunches - I kept her on school dinners because a) she is the fussiest eater and knowing she was getting a good range of food at school was great and b) the school were very reassuring that everything was made with GF food and in a separate area.

@MaryJanesonabreak - that's interesting about eggs - my DD loves pancakes - I'll keep an eye out to see if eggs are making her tummy worse.

@ECPCR2 my DD had the same stomach issues as your LO - DD would have huge globs of mucus (I'm talking 50p size and separate to the stool) in almost every BM, she would be really gassy and her tummy was swollen. She had awful headaches, eczema and heartburn. Unfortunately, there is a MASSIVE coeliac link in my family (all my dad's side is coeliac) - I'm not but my poor DC are. DD's was kicked off after a violent sickness bug back in Feb 2021.

I didn't realise about the dried fruit as another pp pointed out - I did actually use the coeliac UK app and scanned a normal Tesco raisin pack and it said they were suitable, but, as pp said, if the gluten count is low, they don't need to state that they contain gluten?

Also, in case it helps anyone, my DC adore the Old El Paso GF wraps - when DC were diagnosed we struggled to find decent wraps and these are amazing. They are around £3 for 6 (size of a saucer) but really lovely. Also, Promise seeded bread is nice, as it doesn't have that awful stale-like quality that most GF breads do.

Hi. I have 11yo twin girls. Both coeliac, one dx around five years ago, one dx last year after a spell of illness.

DD who was diagnosed last year has been GF for that period of time but is still unwell, a lot. She has terrible wind and diarrhoea most days. She has lost a lot of weight and is very pale. She is often scared of eating. However - bloods have been retaken and she has very low TTGC. Her consultant thinks she may have been left with IBS and the gut has not healed. We are going back in to see the dietician and having continuous bloods.

this is totally different to DD who was dx five years ago. After going onto a GF diet, she has been fine (apart from the odd occasion she’s been accidentally glutened). I guess it goes to show everyone is different in how they respond to the GF diet.

i think the key thing is to have bloods retaken. If TTGC is high then it’s likely to be cross contamination as Pp have suggested. Otherwise it’s something else which requires time/investigation.

sending hugs! It’s so tough having little ones with coeliacs, it’s not well understood is it. I hope you get to the bottom of it x

I’m really intrigued by this and can’t find anything about it on google. Is this something you know happens in the UK?

Hi wonder if experienced parents can help. Just had my 11 yr old tested for Coeliac and her results are back as “slightly abnormal”. In the interminable 2 week wait for a GP apt to discuss this, any advice? She only has slight symptoms but I was diagnosed this year hence her test.

I would push for an OGD, @Mydustymonstera. It isn't pleasant (my DS had to have his under GA aged 8 as DD was +ve for coeliac). My DS only had slight issues (diarrohea after weetabix) but that was it. His coeliac blood screen came back with a level of 45 (so 3 x the normal limit) but following the OGD, they could see Marsh 3A changes to his stomach. We were told, following his first blood test, that the OGD would be a more definitive test to confirm or refute the coeliac diagnosis. I am glad we did it, even though it wasn't nice for DS at the time.

Just an update as well to my main OP (for any coeliac parent) - so my DD was presenting with symptoms of being glutened... turned out she was actually being glutened! We spoke with the school - despite promises of her food being kept separate, there were several (if memory serves, around 3 episodes) of the school (well, a school lunch time helper) giving DD non-GF foods / contaminated food (for example, DD was having her lunch one day when a staff member took her plate away from her and then swapped it with another child's, as the staff member had gotten them mixed up). DD had a blood test which showed her TTgA level was 18 when it should've been 0.

DD is now back on packed lunches as I cannot risk her being glutened. She has a risk plan in place at school but, TBH, I don't think they take it seriously (there's a lot of backstory to it!). Since being packed lunch, we have had no issues.