My Son Has Dairy And Sugar Issues. Is He Celiac Too?

[girlfromclare]

Hi guys, Im new to this site. I am a mother who is concerned about her four year old son. He has been obviously dairly intolerant probably noticeable since his early months. He used to cry all the time and his stools were distinctly pale in colour. He had a severe case of gastro enteritis when he was about 23 weeks old and was hospitalised for that. As he got older, his mood swings were unbareable and we eventually removed everything with dairy in it from his diet. His mood improved quite a bit and his stools did improve in colour but he still has severe reactions to other foodstuffs and we havent exactly been able to distuingish what is the main problem... the reactions are mostly signs of severe distress but without explanation... for instance, he will roll around on the floor screaming and crying and kicking and complaining of something being wrong but not being able to tell us where the pain is. It winds down after about an hour but the irritiability can remain for days... depending on what it was he was eating. Sugars cause such reactions... especially we have noticed, things with fructose in them.. for example apples (very high fructose content) drive him potty altogether so we dont give him any! My own thoughts are that perhaps he is a celiac and that the intestinal damage is so severe that he has serious malabsorption issues as a result... for instance the dairy problem and the sugar problem... I have had his bloods tested recently by a paediatrician for celiac disease but the results are not back yet. I feel guilty because although I dont want the results to suggest that there is anything wrong with my son, I would be relieved to know once and for all if he is a celiac so I can get on with trying to solve the issue.

My husband has digestive issues... he has obvious issues with dairy and often cuts it out for long periods during which he feels better; he also can have three or four bowl movements in one day and often with unexplainable diarrohea.... and at the risk of being crude... he farts an awful lot!! Is it possible that he is a celiac too and that this is the hereditary link with my son?

Sorry for going on and on... its great to get it all out isnt it?

thanks for reading... x x liz

[mouse]

Welcome to the forum. The forum is not that busy on weekends, but someone with young children will post on here soon. I can tell you that this is an inherited disease and it does sound like your husband may be the problem if your son has Celiac. The best to you in finding the answers that you need to help your son.

[girlfromclare]

Welcome to the forum. The forum is not that busy on weekends, but someone with young children will post on here soon. I can tell you that this is an inherited disease and it does sound like your husband may be the problem if your son has Celiac. The best to you in finding the answers that you need to help your son.

Thanks mouse... appreciate it. Yeah I hope someone might have had a similar experience and be able to share it with me. However, I will have the results of his blood tests in the next couple of days and if he is indeed positive as is my sneaking suspicion, I will post them on here as they may help someone else in similar circumstances.

Thanks in advance to anyone who replies.

Liz

[kimber]

Hi

Your son sounds very much like my son..he will be in 3 in october

have you ever tried a complete elimination diet with him....or have you kept a diary?

My son reacts EXACTLY as u describe when he eats corn/popped corn...he will roll around on the floor and cry/hold his belly etc

He had b/w about 1 yr ago by a GI and all came back fine...allergy testing was neg. as well

BUT because of their age, and because they display GI problems....allergy testing is not very reliable

Right now he is dairy/soy/corn/gluten free

My advice would be to try him on a very plain/bland diet and test foods one at a time

I also know a mom who's GI rec a complete fructose/sugar free diet and her ds is doing very well

Has your ds had any gi testing?

We see a new GI soon, and I'm not sure what to expect

My ds is doing much much better on this diet, but still has some rough days

When my ds eats something he shouldn't he becomes very difficult, aggressive, hyper, pale, etc

Kim

Thanks mouse... appreciate it. Yeah I hope someone might have had a similar experience and be able to share it with me. However, I will have the results of his blood tests in the next couple of days and if he is indeed positive as is my sneaking suspicion, I will post them on here as they may help someone else in similar circumstances.

Thanks in advance to anyone who replies.

Liz

[kbtoyssni]

Welcome to the forum! Funny you should mention dairy and sugar. When I was younger (age 4-8ish) sugar and dairy made me extrememly hyper. I'm so lucky my mum made the effort to do an elimination diet or I'm sure I would have been a ritalin-child. I wasn't diagnosed with celiac until age 23. Regardless of the test results, you should try him on a gluten free diet to see if things get better. With younger children, conventional testing isn't very accurate because they're just not old enough to have a lot of intestinal damage yet (which is a good thing Keeping a food diary might be very helpful since you're probably dealing with multiple intolerances here. And it will be a good thing to show him when he's a teenager if you're trying to embarass him! I found my mum's a few years ago and was quite embarrassed by my behavioral report!

[girlfromclare]

Hi Kimber and Kbtoyssni,

Thanks for your replies. Its interesting that your son (Kimber) should be displaying these things too. Is he much improved since you took him off the dairy/ soy/ corn and gluten etc? Or does he still display this kind of behaviour from time to time? And that you (Kbtoyssni) had similar reactions when you were younger. I have kept my son on a completely dairy free diet since he was about 18mths old but there have been so many other reactions and the pale complexion and not much weight gain was leading me to consider celiac disease. I have not put him on any other emliniation diets apart from keeping his general sweets and sugar intake rather low...but his diet is fairly simple as he has no interest in eating and funnily enough (not good if he is a celiac) he seems to crave sandwiches and pasta... He doesnt react with pain but does get irritable. the pain or distress is most obvious after cheerios for instance or apples... or dairy.

Since he has now had the bloodwork done, I will sit tight until I get the resuts before I remove gluten from his diet. I want to do it right now but in case he needs follow up tests I am going to keep going as normal or unless the doctor suggests otherwise. I dont want a gluten free diet to upset any further test results. Is it awful that I am almost wishing the results to be positive? i dont want anything in the world to be wrong with my son, but at this stage it would be a relief to finally have a diagnosis and be able to say for certain what is wrong and what is needed to be done.

How is your son now Kimber?

Hi again Kim,

Just realised that your post did say how your son is now.. My boy has exactly same reactions when he eats something he shouldnt. Pale, hyper, difficult, irritable, and sometimes even aggressive which is worse of course, especially as his younger sister often gets caught in the firing line when he is having one of these episodes. I think that regardless if the results come back negative, I will still seriously consider a gluten free diet, as his emotional stability and health is more important than having any medical diagnosis. I have to admit that the main reason for my need to have this confirmed by a doctor is my own insecurity... I keep having to explain to both my family and my husbands family, why I am being so neurotic about his diet and personally its getting harder to convince everyone that Im not mad. They have all seen him during mild reactions and mild tantrums but to be honest, he only seems to have gone through really bad ones when we are at home on our own and I feel I am constantly having to justify my obsession with his diet. Im getting a bit weary from it to be honest and if he was confirmed as a celiac or with some specific dietary issue, I would be able to stop having to justify myself. Does any of that make sense?

[kimber]

Hi again

OMG...your post made all the sense in the world to me!!!!!

ALL of my family/friends think I'm crazy for restricting zach's diet (even Dh at times)

I don't want to have any testing done on Zach, but would actually feel relief if something....anything was confirmed

I was out when the Dr called with zach's RAST....DH took the message and when he told me it was all negative...with a huge smile...I broke down and bawled...

He is doing better on this limited diet but we still have off days

He is also very lethargic at times and asks me to carry him.....

he also started pre-school so has been constantly ill with a nasty nose...so it is hard to tell why he is so crabby

It's just sad....I just wish I new exactly what was going on and could treat him

BUT to have him on a zillion meds and a restricted diet and still feel clueless...stinks!!

We've missed out on things because of his health, diet and that stinks as well

His 3rd b-day party is coming and one reason we didn't have a kids party was because of his restricted diet...we are having a family get together...I'[m not really looking forward to that

I'll have to keep zach away from all the no/no foods...and I'm sure I'll receive plenty of comment from everyone...that a little of this/that is ok

Has anyone mentioned having your ds's adenoids looked at...or a sleep study

At the end of the month we are going to have Zach's adenoids checked out...he's always been a good sleeper but is always tired....even when he wakes

OF course unless he eats something he shouldn't,,,then he is the extreme

SORRY for rambling on...just a bad day.....

Feel free to keep in touch

I hope things improve on your end soon

[girlfromclare]

Hi again Kim,

So glad that somebody can relate to this weird feeling. that cross between guilt and sadness and frustration. I do want Marks results to be positive and although it is mostly due to a desperate need for normality and answers, certainly a lot of it is just to be able to say to all extended family members "see I'm not mad!!" Im really sick of the constant "Sure a small bit wont do him any harm" and "the poor thing sure isnt he fine today cant he have a little bit" etc etc... Im made out to be the big bad wolf all of the time and its maddening! I see from your post that you little boy is often lethargic. My little man is rarely hungry but always active. He does have bad days when he will lie on the couch for most of the afternoon but then we all have those days. I can understand you bawling crying at the negative results. I reckon we will know our results by tomorrow and I am dreading it!!! Even my husband at this stage reckons I am mad to consider celiac disease but he has relented a little lately and even said last night that if our son turns out positive for celiac, that he too will get tested as I believe the herediary link stems from him. He has digestive issues, moodiness, leg pain, back pain, acne on his back, irritability, fatigue etc. So answers for him would also be great.

Kim at the risk of sounding silly, what is adenoids? Im new to this whole thing. You must find it so hard to keep your little man off all the things that bother him. I already find the dairy diet hard but we are getting used to it now as he has been on it for about two years. Playschool was hard for us too. He was always cross and people couldnt look at him sideways without him having a kicking and rolling around fit... or throwing something across the room. It used to break my heart because I could see that the other mothers thought he was an agressive and cross child... which he isnt deep down. Thankfully, that kind of thing has died down now, only really raising its ugly head after having eaten something he shouldnt.. The other day he had cheerios and went quite mad after them, but then bread doesnt seem to be a problem which is weird. Apples cause problems...I think is the malabsorption issues relating to damage done to his small intestine... I am begging for light at the end of the tunnell.... for an end to the mood swings and a normal, happy life... despite any restrictive diets that we might have to stick to.

I can really relate to you wanting to know once and for all with your son. I read on some other site that blood tests in young children can often be inconclusive. Perhaps you should try it again? Although, if he has already started on a gluten free diet it may not show up anything. I guess the only way to know for sure would be a biopsy of his intenstine... that sounds awful doesnt it. But I do understand your need to have answers.

I hope things get better for you and your son.

Liz x x

[kimber]

Hi Liz

Zach LOVES apples...he eats some apple everynight before bed....

Ugh..not another food to cute out...geez

I know when he was younger apples caused him issues so I limit him to 2 small pieces/slices

No problem....adenoids have to do with sinuses....they could be enlarged causing food issues, breathing issues, constant colds, Si's or EI's

We are trying to look at ALL options

I'm not dismissing food allergies/digestive issues, but think we might have other things at play here

Good luck with the results tomorrow....hang in there

oh and it seems like Dh needs some testing or b/w...I often wonder if we should also take that approach with my DH

We might find answers sooner and it could shed some light on what is going on with zach

Good luck..keep me posted

Kim

Hi again Kim,

So glad that somebody can relate to this weird feeling. that cross between guilt and sadness and frustration. I do want Marks results to be positive and although it is mostly due to a desperate need for normality and answers, certainly a lot of it is just to be able to say to all extended family members "see I'm not mad!!" Im really sick of the constant "Sure a small bit wont do him any harm" and "the poor thing sure isnt he fine today cant he have a little bit" etc etc... Im made out to be the big bad wolf all of the time and its maddening! I see from your post that you little boy is often lethargic. My little man is rarely hungry but always active. He does have bad days when he will lie on the couch for most of the afternoon but then we all have those days. I can understand you bawling crying at the negative results. I reckon we will know our results by tomorrow and I am dreading it!!! Even my husband at this stage reckons I am mad to consider celiac disease but he has relented a little lately and even said last night that if our son turns out positive for celiac, that he too will get tested as I believe the herediary link stems from him. He has digestive issues, moodiness, leg pain, back pain, acne on his back, irritability, fatigue etc. So answers for him would also be great.

Kim at the risk of sounding silly, what is adenoids? Im new to this whole thing. You must find it so hard to keep your little man off all the things that bother him. I already find the dairy diet hard but we are getting used to it now as he has been on it for about two years. Playschool was hard for us too. He was always cross and people couldnt look at him sideways without him having a kicking and rolling around fit... or throwing something across the room. It used to break my heart because I could see that the other mothers thought he was an agressive and cross child... which he isnt deep down. Thankfully, that kind of thing has died down now, only really raising its ugly head after having eaten something he shouldnt.. The other day he had cheerios and went quite mad after them, but then bread doesnt seem to be a problem which is weird. Apples cause problems...I think is the malabsorption issues relating to damage done to his small intestine... I am begging for light at the end of the tunnell.... for an end to the mood swings and a normal, happy life... despite any restrictive diets that we might have to stick to.

I can really relate to you wanting to know once and for all with your son. I read on some other site that blood tests in young children can often be inconclusive. Perhaps you should try it again? Although, if he has already started on a gluten free diet it may not show up anything. I guess the only way to know for sure would be a biopsy of his intenstine... that sounds awful doesnt it. But I do understand your need to have answers.

I hope things get better for you and your son.

Liz x x

[Mamato2boys]

I have to admit that the main reason for my need to have this confirmed by a doctor is my own insecurity... I keep having to explain to both my family and my husbands family, why I am being so neurotic about his diet and personally its getting harder to convince everyone that Im not mad.....Im getting a bit weary from it to be honest and if he was confirmed as a celiac or with some specific dietary issue, I would be able to stop having to justify myself. Does any of that make sense?

Oh boy do I know what you're talking about ! I was starting to feel like a real nutcase whenever I spoke to his pediatrician or his GI. Even my husband was silently wondering to himself if I was being over zealous.

My oldest son (now 3) also has issues with dairy and sugar. Both give him terrible diarrhea. He used to be pretty severely allergic to dairy and would immediately react with a rash & hives all around his mouth, all over his face and down his neck. He would also occasionally tell me he had a tummy ache. That's gotten better, but I didn't get an answer to his recurrent diarrhea until just a couple weeks ago. I had his stool tested through Enterolab because we didn't have a supportive GI. We found out that he carries two GS genes. The test pointed out specifically that that meant he got one gene from each of us. DH and I were stunned to discover that we're GS too. We didn't think that our myriad of health issues were connected to gluten - boy were we wrong !

At any rate - I felt just like you. That I needed "proof" to justify myself. Enterolab really helped with that, but doing the elimination diet helped the most. Our whole family (including our 3 month old breastfed baby) does MUCH better going gluten/dairy free.

The proof is in the (gluten-free) pudding.

[GFBetsy]

liz -

I don't think it's awful to want to find out what's wrong - it's actually more like responsible mothering! You know, you see all of your son's over-the-top reactions, so you are the one who is most likely to realize that there is something not right about them. For example, you've already realized that apples are a trigger for him. This means that you are paying attention and trying to find solutions for him.

You could always videotape some of his reactions, so that you have some "evidence" for those family members who just refuse to understand. Not that you "need" to have evidence, but it might help them understand your determination to keep him away from the foods that are causing him problems. Maybe once they've seen some of his difficulties they'll be more understanding of your efforts to help him.

Good luck, and welcome to the board!

[girlfromclare]

Hi GFBetsy,

Thanks so much for your understanding. Its hard to feel like your doing the right thing when you're met with opposition that seems to suggest you are being neurotic. To make matters worse we were to collect his blood results today and our paediatrician told us that after all the allergy tests that they ran, there was no celiac results at all. Either he forgot to put the celiac screen on the form or they ran out of blood before they got round to testing for it. Typical.... so now I have to put my four year old through drawing bood again... which didnt go too well the first time round as you can imagine! So more criticism will come from all angles im sure... dont get me wrong, families are only concerned about him and about me... thinking im going over the top. But Ill bring him for more bloodwork tomorrow and hope to finally find an answer once and for all. Thanks again to you for your vote of confidence... and to all those who have replied here, this is a wonderful source of comfort and advice.

Liz. x x x ps. Ill post back as soon as I get the results

Oh boy do I know what you're talking about ! I was starting to feel like a real nutcase whenever I spoke to his pediatrician or his GI. Even my husband was silently wondering to himself if I was being over zealous.

My oldest son (now 3) also has issues with dairy and sugar. Both give him terrible diarrhea. He used to be pretty severely allergic to dairy and would immediately react with a rash & hives all around his mouth, all over his face and down his neck. He would also occasionally tell me he had a tummy ache. That's gotten better, but I didn't get an answer to his recurrent diarrhea until just a couple weeks ago. I had his stool tested through Enterolab because we didn't have a supportive GI. We found out that he carries two GS genes. The test pointed out specifically that that meant he got one gene from each of us. DH and I were stunned to discover that we're GS too. We didn't think that our myriad of health issues were connected to gluten - boy were we wrong !

At any rate - I felt just like you. That I needed "proof" to justify myself. Enterolab really helped with that, but doing the elimination diet helped the most. Our whole family (including our 3 month old breastfed baby) does MUCH better going gluten/dairy free.

The proof is in the (gluten-free) pudding.

Yes thats exactly what it feels like.... having to justify all the neurotic food restrictions and careful monitoring of everything! I remember watching a film when I was younger, in my teens or something, and it had a real fuss pot mum on it who checked every label and was forever following her children around checking them and worrying about them and I remember thinking... i'd never be like that, she is just freaky! Now I am that mother.. .only if I had some sort of medical diagnosis that would back me up id feel stronger about putting him on a diet that is stricter than the one he is already on, which is strict as it is.

Im glad your two are showing much signs of improvement. Hopefully this time next year Ill be able to say the same. Fingers crossed. I have to get my sons bloods done again as the doctors informed me they never got to run the celiac screen... they ran out of blood after all the other tests .... or they forgot which is my suspicion! ANyway, he is being tested again tomorrow... so should know more in a couple of weeks.

Thanks again for your post.

Best of luck!

Liz.