Advice on gluten intolerance

[Mrsdoodle]

Hi, I have a DD who is 4 1/2. For around 2 years she had persistent tummy aches which she complained of most days around 5-10 times a day. She also had chronic food cravings, especially for wheaty foods, headaches, nausea, very lethargic and lots of tantrums, but no constipation or diarrhea.
A couple of months ago we tried cutting gluten out of her diet, and within a week or two saw a dramatic change in her. The above symptoms pretty much disappeared, even before I had cut all gluten out of her diet (I did it gradually).
We had a great couple of months, and then suddenly the past week we seem to be right back where we started. I was so convinced that she had a gluten intolerance but we haven't changed her diet again, the only different food she has had is quite a bit of chocolate over easter. Some of it has said 'may contain traces of gluten', but I thought she couldn't be that sensitive because of the improvements we saw while she was cutting down but still eating some gluten containing foods.
She has a very limited diet (sensory problems) and eats mainly pasta with tomato based sauce, cheese, milk, pizza, chips, pancakes with nutella, bread and marmite, some fruit, ice cream, porridge and the odd cake or biscuit. Pretty much everything is homemade except the nutella and marmite and I'm fairly sure I use all gluten free ingredients. Any change in her diet is traumatic for her so I can't experiment too much!
She hasn't been tested for coeliacs, I didn't know about this test until after we'd changed her diet (useless GP).
If anyone has any ideas as to what might be going on I'd be very grateful to hear them. Thank you.

Marmite has gluten in it. It was "ok" when the regulations stated

If the marmite is not the cause, it may a dairy issue. A number of people can develop this alongside gluten intolerance, although for some it is only a temporary problem and once the gut has recovered, some dairy can be tolerated.

My DH has coeliac disease and has to have GF oats. Which porridge are you using? It's a classic for being contaminated, he's also had to stop having marmite.

My DD is a super sensitive coeliac and can't tolerate even the supposed 'safe' levels of gluten in Codex wheat starch so she has to avoid anything that says 'may contain'. Most coeliacs find that once they go gluten free, their reactions to accidentally eating even small amounts of gluten are far worse than they were before they went gluten free. It's such a shame that you weren't offered the coeliac tests before you removed gluten from your DD's diet as I totally understand how awful it would be to try to reintroduce it at this stage :(

Thanks very much for all your helpful responses. Looks like we may have to lose the marmite, which will be a very sad day for her! We are using gf porridge oats now as she definitely had a reaction to normal porridge. She's pretty much stopped eating them now anyway as she says they are 'lumpy'.
I did read about the possible dairy issue somewhere. Wasn't sure about it as she has had a couple of months of being fine while consuming lots of milk and cheese. Think I will try everything else first, as dairy is her only source of protein and various other nutrients. I wonder how long the gut takes to recover and start tolerating dairy (if that is the problem).
Also very interesting about getting worse reactions to small amounts of gluten after going gluten free. I have wondered a couple of times whether this has been happening. Maybe I need to step up my vigilance.
Is there any particular advantage of having a coeliac diagnosis (if she has it) over just assuming she's intolerant and avoiding gluten? I don't think it would be fair to reintroduce gluten now but I guess we could think about doing it at some stage in order to take the test if necessary.
Thanks again for all the advice.

The advantage of a coeliac diagnosis is your DC have regular blood tests to check no gluten is creeping in. It is possible that someone could be getting small amounts in their diet that do not cause severe symptoms, but still cause minor symptoms (and any gluten getting in will be causing damage to the gut and increases the chances of osteoporosis and some cancers). As well as testing antibodies they will also test vit D levels, iron levels, thyroid function and a full blood count.
It's quite common for coeliacs to struggle with dairy whilst their gut is healing but this generally sorts itself out once the gut has fully healed.
It's also worth noting that coeliacs are advised not to consume any oats (even GF ones) when first diagnosed and some coeliacs cannot tolerate oats even after the gut has healed.
I was told it takes the gut 6 months - 2 years to fully heal.
For me (I have 2 coeliac DC) the 2 main advantages of having diagnosis are
1- the antibody blood test - I know for sure if any gluten is creeping in
2- everyone HAS to take their GF diet seriously. It is not a fad, I'm not a precious parent, this is not a lifestyle choice, it is a medical need. School dinners, residential trips, home economic classes all have to accommodate this. It hasn't happened to my DCs (yet) but I know of others who will only be catered for if they have a doctors letter. It also means my DC know they have to take their diet seriously, my oldest is 16, he now is in charge of much of what he eats and he knows that gluten has to be avoided.

As Charmingbaker says re: ongoing blood tests plus consultant appts and access to dietician. Also, coeliacs are entitled to certain foods on prescription plus some local authorities won't provide gf catering in schools or on school trips etc without medical diagnosis.

Thank you so much, very helpful summary.

I recommend going through coeliac testing even though it means going back on gluten. It's really important for coeliacs to know that they have this. A coeliac person needs to be incredibly strict about what they eat (i have two coeliac children....) Someone who is not coeliac just never achieves the same level of vigilance. It makes an enormous difference. If your child is coeliac and you are letting tiny amounts of gluten seep into her diet, then she will be sustaining internal damage.

As a first step, you could ask your GP to refer her for an HLA-typing test. This is a blood test that looks for the DQ2/DQ8 genes (the 'coeliac' genes). If she has the gene, it doesn't mean that she has coeliac disease (there has to be an environmental trigger to 'switch on' the gene too). But if she DOESN'T have it, then she almost certainly won't be coeliac.

You don't have to be eating gluten for this test - so if you get a negative result, then you know she doesn't need to go back on gluten in order to have the antibody test. If you get a positive result, it considerably increases the likelihood that she is coeliac, and you can then decide whether to do the gluten challenge for the antibody test.

Sorry just saw this, thank you very much I didn't know about the gene test. Will ask gp about it when we go back in a couple of weeks. I'm tempted to just put her back on gluten anyway, since she seems to consistently be in just as much pain now as she was before we tried the gluten free thing.

Just to say that my boys were diagnosed with coeliac over 2 years ago and never had a blood test since. Borh consultants we saw said that as long as they are doing well these were not required nor recommended. I would be interested in hearing whether this is accurate advice frim others..,

Just wanted to say I'm an adult with Coeliac Disease. Im not that strict (which I know is bad but I was on a GF diet in the 80s when the food was god awful). I don't see the benefit of regular blood tests - especially if traumatic for the child.

The definitive test for the disease is a biopsy (which is pretty horrendous but only takes five minutes). I hope that people diagnosed in childhood now won't be tempted so much by non GF foods as the range has improved dramatically.

You should be able to get prescription bread, pasta and crackers for your children and there are loads of ways to make really nice cakes (try using ground almonds instead of flour if they don't have nut allergy!). The worst time is as a teenager when you can't go get junk food with all your friends and have to go to expensive 'proper' restaurants instead - but then again times have changed and you can get sushi or potatoes most places.

I didn't know about Marmite - maybe try Bovril instead for a similar taste?

My Dd sounded v similar to your dd apart from the fact that she did get both diarrhoea and constipation and it's so wonderful when you see the dramatic improvement. I still feel upset it took us so long and she too has been left with big issues with foods .
I second the possible need for gluten free oats but also bear in mind that other grains can be or become a problem- hopefully this won't be the case for you but I started to react to rice and corn in exactly the same way as did gluten and I feel totally better without them. Maybe I'm alone but I wanted to mention it just in case helps anyone as it never occurred to me and yet isn't uncommon I don't think

Thank you for your advice Looseleaf. I have been wondering whether my DD could have more than one intolerance or allergy. I have put her back on gluten as she seemed to be in ongoing pain anyway, though now the pain seems even worse. Feels like I'm going round in circles and it's hard to get accurate feedback on pain levels from a 4 yr old!. Hopefully the gp will have something helpful to add.

Something else to consider might be how often she's eating the same thing. I am gluten and lactose intolerant, have been for 20 years, and if I eat the same thing several days in a row I'll start to react badly to it. I try to make sure that I don't have, for instance, oats more than a couple of days in a row or I'll feel sick etc. It's easy to manage and might be worth considering if all else is failing.

My daughter and I are Gluten intolerant but it never showed up on a coeliac test yet we're much better symptom wise without it. Interestingly, I can't actually tolerate any grains apart from rice - so don't have corn, quinoa, or buckwheat etc Also Cow's milk gives me tummy pain and bloating.

I agree with Mcfox if you eat the same things several days in a row I react badly too - so rotating foods helps - like once every 4 days.

Plus avoiding foods can then make the reaction worse when you do have it.

I love Doves Farm Rice pasta for my daughter and do lots of Gluten free yummy recipes for kids (my daughter is 3.5yrs) Here's the link to my recipes if you're needing inspiration - mydaughterwontsleep.com/gfrecipes/

Good luck!

Wow. Avoiding having the same food on consecutive days would be virtually impossible as she only eats 5 or 6 different meals (which are quite similar in any event).

It looks like there could be any number of things causing the ongoing tummy pains. I can't possibly give up all those grain based foods because she would starve! I gave up yesterday and started giving her gluten again, partly because gp has at least referred her to paediatrician so could maybe get coeliac test. However, she's spent much of the day rolling around on the floor and crying in pain so back to the drawing board.

I am very grateful for all the help. Off to look at the recipe link.

You poor thing, I remember when dd was in pain and how awful it was and long for you to get to the bottom of this.
We actually only made progress once have up on the GP and in desperation saw a naturopath- she was recommended by a friend and i fekt had nothing left to try but ironically she seemed to know far more and care far more about the relevant issues and I actually wrote to our mp for the first time to highlight that doctors need more training in allergies and coeliac disease.

I've never had the problem of repeating foods or needing to rotate by the way but the good thing about sharing experiences is it does through up new ideas when you might feel lost. You are doing amazingly as I remember the stress and just keep experimenting as carefully as you can until the pain disappears, there has to be a way . Also I think I heard that often the offending food is one that is most craved (sorry) but worth hearing in mind. This was true of dd who was intolerant of citrus fruit and it was so upsetting as satsumas were her favourite food!

Sorry about all the typos, very tired! I'm normally so fussy about grammar as used to edit books so bit horrified re-reading my post!

It is tough, i know. My DS was an unbelievably fussy eater before the coeliac diagnosis. It was clearly a result of all the tummy pain, because now, 2 years on, he's a great eater. In your shoes, I would pursue the gene test first, because that doesn't require eating gluten.