Reintroduced gluten to ds1's diet. The story so far....

[Laura032004]

DS1 has been gluten free since about a year old. We realised after weaning him that something wasn't right, and eventually pinned it down to gluten. He did have an ELISA screen for gluten allergy/intolerance?, but it came back negative. However, he'd been gluten free for six months or so by then.

We've tried reintroducing a couple of times since then, but he's reacted to pure oat cakes (so wheat free), and we stopped. Now our consultant has said that we need to do three months on a gluten diet, to have him tested again to determine if there is a problem or not.

We started last Saturday, so nearly a week ago, and since then he's been having a couple of slices of bread and/or oatibix each day. The first few days were OK. He's been waking up earlier than normal, but only an hour or so. However, for the last couple of days, he's been saying that his tummy hurts (only when asked if he has a pain anywhere, not mentioning it otherwise), and his poo has gone very smelly again, and a lot more loose than normal. He's also got quite bad smelly wind.

I'm going to try and persevere with it for a while, so that we can get the test done, and get a definite result one way or the other. Does it definitely have to be three months? I suppose it will be OK, if it doesn't get any worse than this, but I hate the thought of putting him through discomfort purposely (although neccesary long term).

Has anyone else been through this? What sort of symptoms did their DC develop?

[clerkKent]

DS misses about 1 day in 7 from school with stomach cramp, which nothing but time can alleviate. No other symptoms. Recently it seemed to be sausage rolls that set him off.

He had an endoscopy recently, which confirmed he does NOT have coeliac disease (although I do). The procedure (at the Portland Hospital) was straightforward and DS sailed through it (DW suffered much more).

We are now waiting to have a lactose hydrogen test in the Easter hols.

[tkband3]

With hindsight she'd been suffering since I introduced gluten into her diet at 6 months. She had the blood test first which indicated very strongly that she had coeliac and had the endoscopy about 6 weeks later. We were very lucky in that for some reason, she seemed to go into a sort of remission between the blood test and the endoscopy so we weren't in the horrid position you guys are in of feeling like we were harming her with the food we were giving her.

We went to the Royal Free for her endoscopy and she had a great time before and after the procedure playing with all the toys. I was in bits when they put her under the general anaesthetic (in fact I started crying when the anaesthetist talked us through it beforehand!), but fortunately OH was there and held her on his lap whilst she fell asleep. She was very disoriented when she came round and was very distressed for about half an hour, which I think is quite common after a GA, but after that was fine. They confirmed the diagnosis within an hour or so of the endoscopy and she went on a gluten-free diet the next day. Within 2 weeks she was a different child, with stacks of energy, eating huge quantities and less moody and clingy...although she then went through the terrible twos - she hadn't had the energy before .

[hennipenni]

She's only been like it since April last year and as off yet has not had any tests to confirm it but, as you say the exclusion diet does seem to confirm that she has a intolerance or allergy.

I just didn't want to introduce it again unless she is to be tested, which I hope she will be so that at least we know one way or the other. Our dentist was even willing to bet that she was !!

[Laura032004]

hennipenni - so are you still waiting for the tests to confirm it? (although the exclusion diet is fairly conclusive). Had she always been like this since being a baby? Poor girl.

[hennipenni]

Hi Laura, my DD is 9yrs old and until christmas had a 8 month history of tummy pains every day, mouth ulcers, headaches, itchy skin, joint and muscle pain, no energy, very low in mood, bloated tight tummy an well just looke awful, we didn't get anywhere with GP (not our normal one)we did a food diary and picked up that if we had a particularly heavy day with regards to wheat /gluten her symptoms got alot worse, anyway, to cut a long story short we cut out all wheat and gluten and found that she was 100%better untill we re-introduced it and then we were back to square one. She even reacted (we think) to maltodextrin. Back to our own GP one month ago who refered her to the paediatrician.

[Laura032004]

tkband3 - they all say different things don't they! I think coeliac UK should be a fairly good authority though. We were told two slices of bread a day, so we need to double up really.

Did your daughter have the endoscopy? How did she find it? Had you had a positive blood test result first?

[Laura032004]

Also, we've now had two nights of middle of the night waking. He's woken up during the night all week, but only for a brief period. The last two nights, it's been a couple of hours before I've resettled him, and combined with waking an hour or two earlier than normal, means he is very tired and grumpy. It's all interconnected really - he is having terrible temper tantrums (which he had before we removed the gluten the first time), but I'm not sure if these are because he's got mild tummy ache all the time, or because he's tired, or a bit of both. Never easy is it?

[tkband3]

My daughter is coeliac and her cousin has also just tested positive for it. He is waiting for his endoscopy/biopsy to confirm the diagnosis and his mother is feeling awful because he is so ill and she has to keep feeding him gluten. I rang coeliac UK and checked with a dietitian friend who both said that if she put him on a gluten-free diet now, then prior to his endoscopy he would have to go back onto gluten for a minimum of six weeks, eating the equivalent of 4 slices of wholemeal bread a day. Apparently some coeliacs have refused the endoscopy but then find it difficult to get food on prescription without having had the diagnosis confirmed.

Sorry for posting this info which I'm sure is not good news - I sympathise hugely with anyone who is having to feed their child food which they know is doing them harm. I hope you all get answers very soon.

[Laura032004]

hennipenni - how old is your DD? (sorry, not familiar with your history). How long has she been gluten free? I was the same - dreaded reintroducing gluten to DS1's diet. However, it's not been as bad as I thought (although getting steadily worse), and I am now looking forward to having him retested. I've heard you need to be on a gluten-containing diet for a while before the test (esp. the biopsy), so I'm going to give it the three months our paed said, as I want a definite yes or no. Then I won't be wondering. If it's no, but he still doesn't agree with gluten, that's fine, and I'll keep him gluten free anyway, but I'd like to know if there is anything 'medically' wrong.

[hennipenni]

Thanks pinktulip, my DD is seeing the paed and hopefully dietician on monday and am dreading in case they say that she's to go back on wheat/gluten so she can be tested.

[PinkTulips]

well at dd's dieticians appointment on wednesday we were discussing the tests and i said 'i know she'll have to go back on the full gluten diet for a few weeks first won't she?' and the dieticians looked surprised and said 'a week should be more than enough for anything to show up'

dd is being investigated for wheat allegy/ coeliacs

[hennipenni]

Pinktulips, is it really a week for gluten allergy to show up? if so this has helped put my mind at rest.

[PinkTulips]

3 months is very long... our dietician told me that a week is more than enough for the test to show up a gluten allergy.

get a second opinion!

[tutu100]

If you are being testing for a gluten allergy then you do need to be eating a gluten containing diet for several months before the tests otherwise you may get a false result. My brother has ceoliacs disease and apparently there are different types of ceoliacs. My brother seems to have it very severely, he can't even eat oats or maltodextrin whereas some ceoliacs can tolerate these. I know it must be hard watching your son feeling ill at the moment, but I think it is the only way that you can be sure of getting a correct diagnosis. My brother before he was diagnosed with ceoliacs used to have almost constant indigestion, terrible loose smelly bowel movements, horrendous wind, and he also had what looked like psoriasis on his arms, but that turned out to be dermatitis herpetiformis.
Good luck with everything. If you are concerned contact your consultant and ask further questions as everyone is different and they may be able to suggest different things for your son.

[TheArmadillo]

we're putting everything on this appointment on tuesday.

That's terrible everything you've had to go through with both your boys.

Its horrible to watch them go through any kind of pain isn't it?

[Laura032004]

That's terrible

It took us a long time to get a referral to a consultant, and TBH, I knew more than they did. We also got a referral to a dietician, but they just checked that what DS1 was eating was nutritionally balanced, which it was, because I spent a lot of time working it all out. No actual help though.

In the end, I asked the consultant to prescribe us some gluten free food as he agreed that a gluten free diet was best since he seemed to have problems with gluten. Once we'd got this, we had no problems getting the GP to do a prescription as well, and we now get 10 items per month on prescription (this is the minimum they have to give you. I have heard of GP's that will prescribe unlimited amounts so the whole family can eat the same food).

There must be 10 GP's in our practise, and I went to different ones until I got the referral I wanted. I've just had to do it again with DS2 for gastric reflux. Annoying that you have to do that though isn't it. I suppose the only other thing you can do is turn up at A&E with constipation problems, and you'll probably end up with a referral quite easily. Not the right way to do things, but who cares if your DS is in pain.

[TheArmadillo]

we reintroduced gluten and wheat to ds diet nearly two weeks ago. We did it ourselves cos drs wouldn't see there was a problem.

this is what has been going on since then Its probably not what you want to hear.