[Genabee]

DD (20 months) has recently had a trial period of being gluten free, based on our paediatrician's advice, due to suspected coeliac disease (or at the very least, gluten intolerance). DD began to lose weight, in addition to a whole host of other symptoms, and as the paed wasn't sure how long a wait it would be until we saw the gastro, she wanted us to stay gluten free as DD had begun to put weight on. (I am aware this is against the normal protocol for those being tested for coeliacs, and questioned this myself initially).

Fast forward 2 months and we have seen the gastro, have been tested for the gene (currently waiting for the results), further bloods will be done next month (testing for other things as a precautionary measure) and a biopsy has been booked for March. In the mean time we have begun to reintroduce gluten, starting with small amounts, increasing daily. Since the reintroduction of gluten to her diet, DD has been increasingly irritable, either completely refuses to have a day sleep or only sleeps for an hour (previously would happily sleep for up to three hours) and is waking up overnight (previously would sleep through uninterrupted).

Previously to going gluten free, her stools were frequent and often explosive and she was always irritable. On a gluten free diet, stools normal and she was averaging 1 to 2 per day; she has been sleeping well and she has been a much happier toddler. Over this past week, stools have increased in frequency again, but at this stage they are still seemingly normal. Her tummy is extremely bloated and her facial rash has reappeared.

I am interested to know if anyone else's children (coeliac or otherwise) have similar behavioural reactions to gluten? Is this coincidental and I am just hyper sensitive to it (as we are keeping a diary of inputs and outputs), or can gluten send our kids feral???!!!! OR is this suggesting there is definitely some underlying intolerance or coeliac disease and this is how she reacts?

[ZombieMum]

My DD with Coeliac disease was quite irritable - part of that was because she was low in iron and lacked energy, the other part was because she felt sick.

Her sleeping was shocking too - but she woke up most nights with night terrors and was very difficult to calm down and she could easily scream for a couple of hours. Our solution at the time was for me to co sleep in her bed and I did this for about 12 months until she was finally diagnosed.

She also had a few red flags for Aspergers, but within 2 weeks of being gluten free, she was a completely different child.

[Genabee]

Thanks Zombie Mum.

DD is doing a gluten challenge at the moment and within a day of her having the smallest amount of gluten, her behaviour has changed completely. She is constantly irritable and lethargic. Also has become unusually clingy and is waking screaming at night (after sleeping through for ages).

I phoned the gastro to ask if this was normal and she basically told me that it has nothing to do with giving her gluten, even if she is coeliac! But there is nothing else we can attribute the sudden change to. It's so frustrating.

So, we are still hanging in there and giving it to her, counting down the days until the biopsy...

[VintageEyes]

Since starting gluten free DS has been sleeping much better. He still wakes up a couple of times a night, but he now will be still, whereas before he would be writhing around all night even when being held.
It makes sense that he is also less irritable because he is getting much beyer quality of sleep.

I wasn't all aware that this could be a side effect, so there is no chance it is just a coincidence/placebo.

[75etd]

My 2.5yo DD has been on a gluten free and lactose free diet since she was about 12 months. This change to gf and lf coincided with her beginning to sleep through the night. In my opinion it was no coincidence. There have been times when we've been on holidays when she has not followed her gf and lf diet and sure enough night waking started occurring again. She also has eczema and dry skinafter a period of time eating a diet containing gluten and lactose.

As she doesn't sleep as well when not following her gf and lf diet she is definitely more irritable, however this could also possibly be attributed to her having a pain in her belly.

Follow your instinct. Numerous doctors have previously told me my DD couldn't be lactose intolerant, nor could her ezcema be attributed to food intolerances-well I can tell you they are wrong. Doctors are not always a font of all knowledge.

Do you have a family history if celiac disease? Am interested as we have made a decision not to test for celiac at this point in time, however it is always in the back of my mind. My DD does seem to be able to tolerate gluten more readily than she did a year ago. Also my DD has never had the explosive poos our problems with gaining weight.

[libbylu]

Have you also had her iron checked?
Kids with coeliac sometimes have low iron, and low iron is associated with night waking and irritability.
Of course, she could just be waking at night and be irritable because the gluten is giving her a tummy ache.

[~Joanne~]

My DS was diagnosed at 21 months after months of trying to find out what was wrong with him.

As a baby and a young toddler he was an angel...slept well, very content but that all changed with the onset of Coeliacs Disease. His sleep was often disturbed, his tummy bloated and he was so very irritable. He would lose it at the smallest of things which was so out of character for him. Nobody wanted to babysit him as he had become so difficult to handle.

After diagnosis and a strict gluten free diet he returned to his old self.

Are you seeing a pediatric gastro?

[mum2cooper]

My children don't react to gluten but we have a friend who is 6 who says his head feels funny and he has behavioural problems when he has gluten - no other side effects from what I know. He is now on a gluten free diet and doesn't have the issues he has when he eats gluten. If you think there is a link I would be inclined to believe it after seeing what gluten can do to this friend of ours.

[~Joanne~]

Have you also had her iron checked?
Kids with coeliac sometimes have low iron, and low iron is associated with night waking and irritability.
Of course, she could just be waking at night and be irritable because the gluten is giving her a tummy ache.

Very true!

Make sure your doctor checks for mineral deficiencies. DS was very deficient in iron and vitamin K.
Our doctor was very hesitant in doing our son's initial biopsy because of the vitamin K deficiency as it affects the ability of the blood to clot.

[Carmen02]

DS does become very lathergic when he has gluten! He was diganoised almost 2yrs ago at a guess! (his 8) Time goes way to quickly, his behaviour doesnt change his the most easy going boy around!