Celiac Disease discussion

[alligirl]

You mentioned a few weeks ago that you were having Nathan tested for Celiac Disease.  Have you gotten the tests back and/or a diagnosis?  How long did it take for you to get the results back?

I'm having the boys tested tomorrow, I think.  I have no idea how long it will take to get the results back and I can ask tomorrow, but just wanted to have an idea.  

I kinda have a "bad" feeling about Stephen....

[Nikki~Nathan&Danielle]

Hi Alli, we had a blood test done which is a screen of 4 blood tests - two came back negative and two positive (the two positives were the more reliable of the tests - something like 95% accurate).  I think they only took about 3 days? There is a "gold standard" test which is a biopsy that is recommended for a more definite diagnosis (they take a sample of the intestine), but my doctor recommended not to have that done since the bloods came back as they did and because he had "symptoms" it pretty much spoke for itself.  So, we have embarked on a 100% gluten free diet - it's been almost 3wks.  I haven't seen any major changes yet, but I understand it can take a while for the intestine to heal enough and of course if he was to eat a bit of gluten by accident then that would set us back, I'm confident he's not eating any, but there is always the risk of cross-contamination from elsewhere or other products.  We have a paediatrician appt in a couple of weeks, so will discuss it further then.  I'm undecided yet what to do with Danielle as far as introducing gluten into her diet - there are different theories about normal introduction or delayed or never.  Still pondering that one and sorry for blabbering on about more than what you asked for.  :lol:

Good luck and keep me posted. 

[alligirl]

Thanks...I'm  gonna PM you, I should have done that in the first place! :roll:  :lol:

[Colleen]

Actually -- It is good to talk about it here so others can learn more about it.

Do you mind sharing what the symptoms are?

[Nikki~Nathan&Danielle]

Good idea Colleen!    Maybe Alli could change the title to say Celiac Discussion/Awareness or somthing...

Nathan's particular symptoms are (mostly poop related  :lol: ):

Pale poop (pale yellow)
Undigested food in poop (all the time and literally chunks of everything he's eaten - not just common things like corn)
Frequent pooping - in Nathan's case - 4-6 times a day
Very soft poop and falls to bits (diarrhoea would be common for a lot of celiacs, but Nathan's never had diarrhoea)
Skin rashes (he's had his for 6+mths) including a nappy rash that never went away even when he was toilet trained - but his isn't the celiac related skin rash, can't remember the name of it - dermatitis something
Stunted growth (he stopped growing as his food wasn't being digested) - but with diagnosis most celiacs catch up
Constantly hungry - never satisfied
Anaemia (fortunately he was only slightly low in iron)

The only real reason I put all of these things together was from reading my What to Expect book about the diseases at the back and came across this one and was surprised to see he had a lot of the symptoms.  He's a really healthy well child apart from that, so wasn't looking ill or displaying anything much different from his ordinary.  Also my homeopath mentioned that his frequent pooping actually was a lot whereas I thought it was from eating too much fruit.

Others are, which Nathan's not affected by:
Fatigue
Developmental delays - both speech and physical
Diarrhoea

Celiac (or Coeliac as it's spelt in NZ and Britain and a lot of other countries) is a genetic disease, but it is often triggered by something like a virus - which I have traced Nathan's back to a vomiting virus he had about 5mths ago.  Some believe that Celiac is misdiagnosed as Irritable Bowel.

Improvements I've already noticed:

He's growing in height again
His hunger isn't quite as insistent
Rashes are beginning to clear
Only poops 2-3 times a day now
Poop is getting darker, firmer and less chunky

[Lici's Mum]

Well, I had to take Lici to the doctor for something else but we ended up talking about her lack of size (although she is growing steadily, she is a long thin child and still fits some 6-9 month shorts - in fact most shorts she owns are still size one and she's three) and I had talked about her allergy to wheat which was mostly elimination diagnosed. Although we took her to a paediatric gastroenterologist, he faffed about so much I couldn't be bothered returning as I felt we had figured out what was causing the problem..... Anyway, her doctor now thinks it's a good idea to get her properly tested for coeliac disease.
Her initial symptoms were ezcema and then when she was weaned, we put her on weet bix for breakfast and WHOA!!!!! Her nappies absolutely REEKED! (Even the paediatric gastro guy who you thought would have seen (smelt) some bad stuff in his time was amazed  :lol:  :oops: )
She went through a failure to thrive phase at this time too but we moved her to a lot of rice based carbohydrates and give her a limited amount of bread.
I really should get her tested especially as I am lax about cutting out wheat products completely and since I don't change her nappies anymore (YAY) I can't really monitor her bowel movements.
Will let you know when I get my act together and get her tested.

[alligirl]

Celiac discussions can get kinda gross kinda quick! :lol:   Especially from what I've seen on Celiac message boards.

Stephen's symptoms are very similar to Nathan's and it sounds like his pooping habits are identical--
frequent  and pale color poops
stools that float rather than sink (there's a technical term for that "stratorrhea" or something like it) with undigested food
and come to think of it, he is hungry and asking to eat all the time (perhaps that's just normal toddler behavior, though)
and he's waffled between diarrhea and constipation for well over a year now--we've just in the last few months gotten him "un-constipated" and now he deals with bouts of diarrhea.

Zachary's poops are a little harder to tell since they're still in his diaper, but he also has VERY foul and HUGE dirty diapers a lot (it's nothing for me to have to change his clothes 2-3 times a day because he poops out of them so much)!  He's also quite small (not quite 19 pounds and a year old) and has a couple developmental delays.   And he has eczema.  Even two people who are related and both have Celiac disease can have very different symptoms. 

We had the tests done yesterday.  Poor kids, they took a lot of blood.  They only did two tests and it'll be about a week till we find out...I'm hoping it's not delayed by the Thanksgiving holiday.  THen again, I don't want them to have to be gluten-free for THanksgiving! :cry:

I'll change the name of the thread....and I might move it to the food allergy forum, it's probably better suited there than the Lounge (especially with all the talk about poop! :lol: ).

[Nikki~Nathan&Danielle]

:lol:  Who would have thought we'd be talking about poop? 

Alli, we don't get the floaters anymore!  :lol: 

Emma, I think it would be a good idea to get Lici tested, especially if it is Coeliac she will need to do a 100% GF diet for life, any small amounts will continue to damage her body and it won't get a chance to repair itself and may lead to other illnesses later in life.  She will need to be on a full normal diet though to be tested from what I understand and then it's just a blood test - at least you'll have a better idea of whether it's an allergy thing or an intolerance (wheat allergy is quite different from Coeliac - CD is an autoimmune disease).  I guess she could have the allergy tests done too - I wish in a way that we'd done that with Nathan too, but I'm reluctant to go back for more blood tests again (although he completely didn't even notice and only slightly flinched when the needle went it  :shock: ).

Go on!  :wink:

Alli, I know what you mean about thinking of holiday meals not being the same.  Already with Christmas lunch I've vetoed going to a restaurant since my parents suggested it.  Too much to worry about just yet I think, so we'll end up having a bbq lunch which should be easy to cater for.

[quinns dad]

hi all,

weve been having problems with our little fella from pretty much birth.   ( bottle / breast fed 50 / 50 since about a week. SMA GOLD )

he would always get real bad wind ( often trapped ). we were always given the old "colic" excuse.

quinns just turned 1 and on his birthday he had the mother of all screaming fits. ( not seen since the septacimia scare!! )

his stomache was swollen up like a bowling ball
it wasnt the first time hed had it but you kinda put it down to the whole baby experiance.

5 days later he had the same experience...
that was it.. off to the doctors with him

good ol NHS.......

"well refer you to a specialist... could be a month or 2!!!"

now never being one to sit around and wait ( ), and also knowing a fair bit about adult nutrition i decided to take matters into my own hands :shock:

knowing that i was fairly sensative to milk products, all cow products were 1st off the shopping list.
next off the shopping list was GLUTEN.
didnt really know too much about Gluten TBH.
 the one thing i did know though was that it was in almost all processed( :evil: ) food.

i dont eat processed( :evil: ) food so neither does Quinn. ( now )

this was last tuesday that we implemented these changes
no dairy ( soya milk now )
no processed( :evil: ) food
no wheat.
no gluten.

the change weve seen him was noticable on the 2nd day.
im reckoning its lactose rather than Gluten.
( the exception will of course be Celiac Spore )
but fingers are most definately crossed.

the changes weve witnessed are.
he's happier in general
his poo is more like adult poo. ( ie not like peanut butter)
he sleeps more soundly and for longer
only 1, sometimes 2 poo's per day as opposed to 3 or 4
less trapped wind ( although broccoli and cauliflower are now off the menu, after yesterday)

so now were just waiting to see the specialist. hopefully theyll be able to narrow the list of intolertable foods..

[Nikki~Nathan&Danielle]

Good for you quinns dad!  So what are you going to do now with re-introducing food?  Or will you stay free of all those foods until you have your specialist appointment?  What sort of meals are eating with being free of all those food groups?

[Khyan & Sahria's mum]

Would you expect that in a skin prick test for wheat that if you had no signs of problems that coeliac disease would be not an issue ?

Just wanted to know your thoughts 

[alligirl]

Khyan's--Celiac can only be diagnosed through blood tests/biopsies/GF diets (like Nikki has said, the biopsies are the best, but I think you can kind of figure it out by positive blood tests and a positive reaction to a GF diet).  It's an intolerance, not an allergy (someone smarter than me can explain the difference) and it has to do with how your body processes it (namely, the small intestine).  Does that make sense?

Quinn's Dad--sounds great that you've begun figuring out stuff.  Be careful though with the soy milk (I'm assuming that's what you mean by "soya" :? ) because I've read that some brands also have gluten in them.  Just "food" for thought.....no pun intended. :wink:

*twidling my thumbs waiting for our results....*

[quinns dad]

Good for you quinns dad! So what are you going to do now with re-introducing food? Or will you stay free of all those foods until you have your specialist appointment? What sort of meals are eating with being free of all those food groups?

the meals were on is just real natural home made food.
breakfast is GM / GL / WH / DA free, corn flakes and oats. made with organic soya milk
his other 2 meals are either rice or potatos and meat/fish and veg.

weve put him onto cow n gate soya milk for his 2 bottles
luckily our local tesco has a fantastic selection of GM / GL / WH / DA free snacks and treats

as for introducing new food.... yeah were gonna start next week :?
were leaning (hoping) towards that he is lactose rather than gluten intolerant.
were going for 1 food at a time. Weetabix ( his fave ) with soya milk.
so fingers are well and truly crossed

[Lici's Mum]

Well I finally got my act together and went for the blood tests for Lici. Got three phials taken - a couple of allergy tests, coeliac and some others.
Got one result that afternoon - very low in iron. (Which completely does not match symptoms, I thought those kids low in iron had no evergy which begs the question, just how active is she going to be when she has normal levels of iron  :shock:  :lol: should I be worried  :lol: ).
But now I play the waiting game to get the rest of the results and I guess another trip to the doctor soon.
Will let you know.

[Nikki~Nathan&Danielle]

Good luck Emma!  Actually, funny you mention low iron - from the reading I've done, kids tend to suffer hyper activity rather than fatigue, so once her levels are normal she may tone it down a bit, that's why low-iron is also linked to disturbed sleep.  Strange but true.