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background - dec 08 my 2yo dd (dd2) was diagnosed with celiac disease via biopsy. at that time we all had the blood tests which came back negative.

in february 09 my 5yo started complaining of tummy pain (he eats a LOT of gluten, often eating 8-10 slices of bread a day plus pasta, crackers etc. he is a typical bottomless pit ;)) took him to the dr thinking possible celiac disease possibly anxiety - he started school in january and was not settling in well. dr ordered the gene test for all of us and myself and ds and dd1 all have the gene. (as an aside i have tons of symptoms and am having a biopsy next week) but the message from the dr's office was "none of you have it" - but of course the gene test doesn't show that :rolleyes:

anyway, i called our coeliac society for advice and they suggested repeating the blood tests which i haven't done yet because he stopped complaining about the tummy pains after a few weeks. however he's just started again.

he doesn't really have any other symptoms - he is very skinny, you can see every single rib, his collar bones etc, everything sticks out in an awful way but his weight to height ratio is fine and he is not growth stunted or anything like that.

i've decided i'll get the blood tests repeated next week but just not sure whether to push for a biopsy even if the tests show as normal again or not. so trying to find any possible cluster of symptoms IYKWIM (we do have behaviour issues with him atm but from what i can tell it's not uncommon in boys his age who've just started school)

so did anyone have regular nose bleeds - especially when sleeping at night - that stopped after going gluten-free?

PS: if i am found to have celiac disease does that increase or decrease his chances of having it given the whole genetic thing?

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background - dec 08 my 2yo dd (dd2) was diagnosed with celiac disease via biopsy. at that time we all had the blood tests which came back negative.

in february 09 my 5yo started complaining of tummy pain (he eats a LOT of gluten, often eating 8-10 slices of bread a day plus pasta, crackers etc. he is a typical bottomless pit ;)) took him to the dr thinking possible celiac disease possibly anxiety - he started school in january and was not settling in well. dr ordered the gene test for all of us and myself and ds and dd1 all have the gene. (as an aside i have tons of symptoms and am having a biopsy next week) but the message from the dr's office was "none of you have it" - but of course the gene test doesn't show that :rolleyes:

anyway, i called our coeliac society for advice and they suggested repeating the blood tests which i haven't done yet because he stopped complaining about the tummy pains after a few weeks. however he's just started again.

he doesn't really have any other symptoms - he is very skinny, you can see every single rib, his collar bones etc, everything sticks out in an awful way but his weight to height ratio is fine and he is not growth stunted or anything like that.

i've decided i'll get the blood tests repeated next week but just not sure whether to push for a biopsy even if the tests show as normal again or not. so trying to find any possible cluster of symptoms IYKWIM (we do have behaviour issues with him atm but from what i can tell it's not uncommon in boys his age who've just started school)

so did anyone have regular nose bleeds - especially when sleeping at night - that stopped after going gluten-free?

PS: if i am found to have celiac disease does that increase or decrease his chances of having it given the whole genetic thing?

Yes - both myself and my oldest son had frequent nosebleeds. Now that he is gluten free, the nosebleeds stopped. He had such frequent nosebleeds he was referred to a specialist to test his sinus for abnormalities (etc..) and they all came back normal, negative, etc. This included tests of blood cell counts, etc because the doctors were extremely puzzled he should have such frequent nosebleeds. They ended up saying he was always picking his nose.. but seeing it just start bleeding was really weird and he wasn't just picking his nose.

Interestingly enough, I am DQ4/DQ8 and my son is DQ4/DQ5. If the DQ4 gene is the culprit in the nosebleeds.. that would go against the fact the DQ4 gene is the only gene that doesn't exhibit gluten issues.....

BTW the nosebleed frequency was as many as 3-4 PER DAY sometimes!! Now it's about 1 every 4 MONTHS... My son also had bedwetting and potty training issues which may be associated with it.

My son also is on medication for Anxiety as well - in case this helps any.

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background - dec 08 my 2yo dd (dd2) was diagnosed with celiac disease via biopsy. at that time we all had the blood tests which came back negative.

in february 09 my 5yo started complaining of tummy pain (he eats a LOT of gluten, often eating 8-10 slices of bread a day plus pasta, crackers etc. he is a typical bottomless pit ;)) took him to the dr thinking possible celiac disease possibly anxiety - he started school in january and was not settling in well. dr ordered the gene test for all of us and myself and ds and dd1 all have the gene. (as an aside i have tons of symptoms and am having a biopsy next week) but the message from the dr's office was "none of you have it" - but of course the gene test doesn't show that :rolleyes:

anyway, i called our coeliac society for advice and they suggested repeating the blood tests which i haven't done yet because he stopped complaining about the tummy pains after a few weeks. however he's just started again.

[smo[]

i hate to ask a stupid question; but, why would you get a 'gene test' BEFORE any of the 'celiac panel'?? that makes absolutely no sense.

[and i really wish people would stop refering to these markers as 'celiac genes', but, that's another story]

also, not to be rude.. but, 8-10 slices of bread per day?? depending on the kind of bread that you buy, on average that's 500-600 Calories.

among friends, a 5 yr old needs 40 Calories per pound.. on average, about 1800 Calories. depending on how much pasta and how many crackers he eats... you are adding at least another 400 Cal, or so. so, over 1/2 of your sons Cals come from these products alone. if you were to add in other foods, and their MUST be other foods -- i'm sure that he is overeating carbs and, my guess, undereating protein.

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i hate to ask a stupid question; but, why would you get a 'gene test' BEFORE any of the 'celiac panel'?? that makes absolutely no sense.

[and i really wish people would stop refering to these markers as 'celiac genes', but, that's another story]

also, not to be rude.. but, 8-10 slices of bread per day?? depending on the kind of bread that you buy, on average that's 500-600 Calories.

among friends, a 5 yr old needs 40 Calories per pound.. on average, about 1800 Calories. depending on how much pasta and how many crackers he eats... you are adding at least another 400 Cal, or so. so, over 1/2 of your sons Cals come from these products alone. if you were to add in other foods, and their MUST be other foods -- i'm sure that he is overeating carbs and, my guess, undereating protein.

i dont under stand what you mean by the gene test before the celiac panel? we had blood tests done first, then the gene test (which sorry, but that is what the dr referred to it as) and now i'm talking about having the blood tests done again. by celiac panel do you mean the blood tests or something different? oh and we did what the dr suggested. it's not as though my dd having been diagnosed with celiac disease 4 months ago makes me an expert who knows everything :unsure:

yes, he doesn't eat a lot of protein - he doesn't much like it. he does eat peanut butter for breakfast, baked beans sometimes, beef sometimes, and loves legumes (which we eat a lot of) but he doesn't like eggs or chicken or cheese or bananas or cold / deli meat, seafood, nuts or anything like that.

dadoffiveboys - thanks for that :) unfortunately i don't have copies of any of our results. will have to ask the dr for them but they are not being all that helpful really, i'm sure they think i'm just an overreacting mother.

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My celiac son also ate a ton of bread before diagnosis. I don't know what God was doing giving celiac to a kids that loves to eat as much as he does. Anyways nosebleeds that went away gluten free, definitely. Since 2 years old and he was diagnosed at 10. We thought it was from nose picking. Once I was at the table with him so I saw that he wasn't picking and it just started bleeding out of the blue. Weird. Also totally skinny. Maybe all that eating was an attempt to get some nourishment. Now, gluten free, he doesn't eat so much and is no longer skinny. He just gets nosebleeds when badly glutened. Hope you figure out your health issues.

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Yes, I also had those spontaneous nose bleeds. Not only from gluten, but candida, and dairy as well. I had many symptoms which aren't considered the "typical" ones. Red ears without any obvious cause, an itchy back without a rash. Rough, dry skin on knees and elbows...the list goes on. Oh yes, and brain fog and some behavioral oddities too.

I was also very skinny, and was always hungry - ate tons of bread and basically anything else I could. That's the body's way of making up for the malabsorption. Thank goodness for peanut butter, as it was my main protein. Too bad it was on gluten-filled bread!

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yeah that's his favourite too - peanut butter and honey sandwiches. and i totally understand the trying to make up for the malabsorption thing, my 2yo ate like a horse before being diagnosed, and yet was losing weight, despite eating more than me!

the 5yo turned out to be constipated the other day which gave me some relief until i remembered that could be a symptom too...

thanks all. i will be asking for repeat blood tests as soon as he's back from a holiday with his grandparents.

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yeah that's his favourite too - peanut butter and honey sandwiches. and i totally understand the trying to make up for the malabsorption thing, my 2yo ate like a horse before being diagnosed, and yet was losing weight, despite eating more than me!

the 5yo turned out to be constipated the other day which gave me some relief until i remembered that could be a symptom too...

thanks all. i will be asking for repeat blood tests as soon as he's back from a holiday with his grandparents.

My son has had several nose bleeds as well, especially at night. Glad to read that others have that in common. He is 7 and was diagnosed and has been gluten free for only 6 weeks so I'm hoping that the nose bleeds stop soon!

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Yes, I also had those spontaneous nose bleeds. Not only from gluten, but candida, and dairy as well. I had many symptoms which aren't considered the "typical" ones. Red ears without any obvious cause, an itchy back without a rash. Rough, dry skin on knees and elbows...the list goes on. Oh yes, and brain fog and some behavioral oddities too.

I was also very skinny, and was always hungry - ate tons of bread and basically anything else I could. That's the body's way of making up for the malabsorption. Thank goodness for peanut butter, as it was my main protein. Too bad it was on gluten-filled bread!

My son had the red ears too.

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I've gotten nosebleeds my entire life. I've always attributed them to my deviated septum and allergies because that's what doctors always said. However, I think if someone has a deficiency of Vitamin K they might have nosebleeds. I read that in "Dangerous Grains", and also that vitamin K is found in greens like lettuce and spinach. Not that a little boy will eat a lot of that willingly!

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actually he loves salad sandwiches but there's only so much lettuce on one of those lol

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Interestingly enough, I am DQ4/DQ8 and my son is DQ4/DQ5. If the DQ4 gene is the culprit in the nosebleeds.. that would go against the fact the DQ4 gene is the only gene that doesn't exhibit gluten issues.....

Interesting study in Pubmed. Funny how those Asian celiacs show up if you just go looking for them....

http://www.ncbi.nlm.nih.gov/pubmed/19283870

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