3 And A Half Year Old With Symtoms - Negative Bloods What Do You Think?

[beebs]

I wrote before about 2 months ago but just thought I'd give an update and see what you guys think.

My 3 and a half year old started having funny poos before christmas. Very pale, mainly loose or floating, alot of the time large bulky amounts, very smelly. Sometimes (but only rarely) constipated and then back to loose pale stools. Sometimes he has one a day, sometimes two a day and sometimes none for a couple of days. There is celiac in my family -my mother has it.

He was lactose free for 2 weeks and now has very small amounts sometimes and it made no difference. He doesn't drink juice or anything like that. And now only has lactose free milk.

He became severely anaemic at one point to the point where he found it hard to breathe, he was dizzy all the time, had major leg cramp issues, such bad restless legs that he couldn't sleep, couldn't eat and lost a dress size in clothes, that lasted about 6 weeks. We are out of that part thankfully and he has even started putting on weight again. He still has problems with eating when he never did before. I have to force him to eat most times. But all the time with the pale loose/diarrehea/floating poo.

He still gets leg cramps sometimes and gets dizzy spells sometimes but not alot.

He has real concentration issues and sometimes he zones out and its like he just isn't registering, sometimes you have to say his name 10 times before he registers. His behavoiur has changed dramatically and he has massive tantrums and is either grumpy and irritated or hyperactive. He has suddenly become very clumsy when he wasn't ever before and keeps falling over and ending up with stitches etc (Drs like to point out that all three year olds do that...but I know my child and his behavouir has changed big time since his poos changed)

He has had about 3 normal looking brown poos in over 3 months.

We went to a peadiatrician and she did the celiac bloods which came back negative as far as she is concerned it is case closed.

We have an appointment with a specialist paed GI in June, but I'm starting to feel as if I am being silly about all this - I was so sure it was Celiac and now I'm doubting it and have no idea what it could be.

Please any ideas would be very much appreciated!

[ravenwoodglass]

I am so sorry your little guy is going through so much. False negatives are even more common with children than with adults. That applies also to the biopsy. June is a long way away for a little guy who is so sick. Can you ask them to put him on a cancelation list so if someone cancels they can slip him in sooner. Also talk to a nurse maybe, ask for advice to help him and explain all he is going through and perhaps that might help move him up also.

You do have the option of trying the diet with him, and he does sound like he could very well be celiac, but you wouldn't be able to have the biopsy then. But if the diet helps him that may be enough for your regular ped to give a diagnosis.

You also have the option of going with Enterolab, they look for the antibodies in the stool. They don't diagnose celiac but if he is making antibodies to gluten that at least will tell you he shouldn't have it.

Give your little guy lots of hugs and understanding. It sounds like he may have ataxia which causes issues with balance and that combined with the tummy troubles must be making him really miserable.

I hope you get some answers soon.

[beebs]

I am so sorry your little guy is going through so much. False negatives are even more common with children than with adults. That applies also to the biopsy. June is a long way away for a little guy who is so sick. Can you ask them to put him on a cancelation list so if someone cancels they can slip him in sooner. Also talk to a nurse maybe, ask for advice to help him and explain all he is going through and perhaps that might help move him up also.

You do have the option of trying the diet with him, and he does sound like he could very well be celiac, but you wouldn't be able to have the biopsy then. But if the diet helps him that may be enough for your regular ped to give a diagnosis.

You also have the option of going with Enterolab, they look for the antibodies in the stool. They don't diagnose celiac but if he is making antibodies to gluten that at least will tell you he shouldn't have it.

Give your little guy lots of hugs and understanding. It sounds like he may have ataxia which causes issues with balance and that combined with the tummy troubles must be making him really miserable.

I hope you get some answers soon.

Hi Ravenwoodglass,

Thanks for the reply! Just a couple of problems. We are not in the US so can't go through the entrolab tests. (Boohoo) and every Dr I have seen here have no idea at all about celiac or gluten intolerance. In fact Drs here would think anything but celiac even if its in the family. The pead that we saw recently said - and I kid you not 'I don't know what it is, the celiac bloods are negative so its not that, come back in 3 months and we'll see if he is still unwell'.........WHAT??? I was shocked - he is 3 and a half for gods sakes and we have a family history of Celiac and other AI diseases!

He has deffo picked up from when he was really aneamic so now our GP is - 'wow, look how healthy he is - he looks great' and I keep thinking - but he has pale diarrehea all the time and he falls over all the time and his personality has changed. They basically think I am one of those overly freaked mothers who doesn't really have a sick child but gets worried over nothing. Its very stressful because they make me doubt myself.

He is on a cancellation list because the GI is a celiac specialist so he wants to see those kids asap. Which is something to be thankful for!

I'm not sure about going gluten free without a diagnosis. What happens when he is 18 and I have to say - well, you were never diagnosed but I thought I'd take you off anyway...please don't drink beer. I guess I could try and see if it makes him feel better - but the ceoliac society here says that you shouldn't do that....its all so confusing . I hate not knowing....arrgghh.

Really at this point its his behaviour that is the main symptom. He is just irritated and annoyed all the time, he can't concentrate and he goes into these kinds of trances, and the tantrums!!. Very strange.

[ravenwoodglass]

I am glad to hear that he is on the list and hope the ped GI can get him in soon. I would suggest that no matter what the test results are that you give the diet a good strong try. If it helps that is diagnostic, as a last resort. Kids do get accidentally glutened. Many of them especially when a bit older can feel the effects it has on them. Even if he should as a young adult rebel and go off the diet at least he will have had benefit when young. He sounds like he has strong neuro symptoms which could lead to teachers and doctors wanting to medicate him when he is school age. Something you definately don't want if diet takes care of the issues.

[beebs]

I am glad to hear that he is on the list and hope the ped GI can get him in soon. I would suggest that no matter what the test results are that you give the diet a good strong try. If it helps that is diagnostic, as a last resort. Kids do get accidentally glutened. Many of them especially when a bit older can feel the effects it has on them. Even if he should as a young adult rebel and go off the diet at least he will have had benefit when young. He sounds like he has strong neuro symptoms which could lead to teachers and doctors wanting to medicate him when he is school age. Something you definately don't want if diet takes care of the issues.

I think you are right. Gluten free even if there is no diagnosis.... at least for awhile to see what happens. Thanks for you help!