Author Topic: Celiac Disease discussion  (Read 40479 times)

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Nikki~Nathan&Danielle

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Celiac Disease discussion
« Reply #15 on: November 29, 2005, 06:07:37 am »
Alli and Emma, any news yet?

Offline alligirl

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« Reply #16 on: November 29, 2005, 14:14:43 pm »
No word yet....I called the dr's office on Friday to see if they knew anything.  The nurse wouldn't tell me anything because the doc hadn't signed off on the results and given her instructions yet ( :? )and they weren't having full office hours till Monday.  They didn't call yesterday so I expect a call today, and if not I'll call them tomorrow....it's driving me BATTY!  Thanks for  asking about us!
Alli-
Stephen Alexander 01/27/03
Zachary Christopher 11/11/04
Marc-Adam Garrison 10/26/06
Genevieve Cathryn 05/07/09

Offline Lici's Mum

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« Reply #17 on: November 29, 2005, 22:09:34 pm »
Not yet but we were told to expect not to hear for I think it was 10 days to two weeks. (I think, Mummy brain seems to have kicked in...)
Emma
Mum to Lici (Felicity) 23 October 2002



Offline Lici's Mum

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« Reply #18 on: December 02, 2005, 03:25:02 am »
Still no result for the coeliac test but get this, negative on the gluten allergy.... What? Through elimination we can SEE (through exzema) that she must have an allergy to this. Sigh. Back to retest I guess.
If it's not gluten, what else is in bread, biscuits and wheat bix that could be causing the problems.... any ideas?
Emma
Mum to Lici (Felicity) 23 October 2002



Nikki~Nathan&Danielle

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Celiac Disease discussion
« Reply #19 on: December 02, 2005, 04:10:53 am »
I am a bit confused, but I wonder if it's possible to not be allergic to gluten but still have gluten intolerance aka coeliac since one is an autoimmune disease and the other allergy? I've been reading a book that talks about additives and preservatives in relation to kids - is there a common food additive number on the back of any of those products?

Alli, any word yet?

Offline alligirl

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« Reply #20 on: December 02, 2005, 13:30:35 pm »
YES!  My boys' tests came back NORMAL!!  YAY!! :D

Although, I have to admit, I still have my doubts since they told me that the test isn't accurate for kids under 5.  *sigh* But going gluten free seems so drastic since they're results came back normal, ya know?

And another good thing....my dad is getting tested!  I was so afraid he wouldn't being the stubborn guy he is, but he went to the doc just a few days ago and asked about it!  I'll be getting tested after the first of the year...WHICH BRINGS ME TO....

If you're kids have it, you really should be getting tested!!  Undiagnosed celiac disease can lead to malnutrition, osteoporosis (which my aunt has),  and lymphoma (how my grandmother died).  Just a friendly nudge to get you going in the right direction! :wink:
Alli-
Stephen Alexander 01/27/03
Zachary Christopher 11/11/04
Marc-Adam Garrison 10/26/06
Genevieve Cathryn 05/07/09

Nikki~Nathan&Danielle

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« Reply #21 on: December 02, 2005, 18:57:57 pm »
That's great news Alli! You must be stoked!  :D

I actually discussed it with my doctor and she said if I wasn't having symptoms at the moment then things are ok, I don't think I've been "triggered" yet.  My mum got tested and she came back negative.  I know, I should, but we don't have med insurance and I can't justify an appointment just yet without another reason since I'm well.   :roll:  DH and I are pretty much living a gluten-free diet anyway since Nathan is so I wonder if the test will work anyway now?  I will talk to Nathan's paediatrician next week when we have his appointment and also discuss Danielle since she's gluten-free still. 

Now I'm thinking that we're also dealing with Diabetes Type 1 with Nathan, he has some terrible rages which are miraculously fixed by food.  :x  :cry: .  Apparently they can go hand in hand, so that will be another discussion point.  Think I better write a list to make sure I cover all points.

Emma, I'm surprised that test is taking so long to come back, Nathan's only took 3-4 days.  Guess it depends on the lab they send it to.

parker&peytonsmum

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Celiac Disease discussion
« Reply #22 on: December 02, 2005, 22:49:08 pm »
Emma-was Lici tested for milk allergy?  You'd be amazed at all the things that have milk in them, almost every bread/biscuit/pastry does.

Offline Lici's Mum

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« Reply #23 on: December 03, 2005, 01:11:30 am »
What I'm thinking is once we get back from our short trip to Australia and perhaps, I guess after Christmas (depending on how busy we get in the week before) I'll take her back for another range of allergy testing - at least have a proper consult with the dr once the coeliac's test is back because I have only talked to the practice nurse who phoned through the result.
Not sure what exactly the tests were but they took 3 phials of blood off her.
Emma
Mum to Lici (Felicity) 23 October 2002



Offline mumofboyandgirl

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« Reply #24 on: December 25, 2005, 07:40:34 am »
Hi

My DD 18 months just got  diagnosed with celiac disease three weeks ago. We took her to the doctor because her tummy was so big and arms and legs skinny. Anyway they ended up doing a endoscopy and she had no vili left at all :( Anyway I realised her runny poos which were 4-6 times daily and her constant eating, and moodyness were not normal either (which everyone I asked previously said it was). Anyway she was a perfect sleeper before but a few months before she got diagnosed she was waking 2 hourly during the night for food, we now realise it was because she was constantly hungry as she wasnt absorbing any nutrients/calories. Anyway I have a few questions for those who have experience similar.

How long will it take for her tummy to go down? It has been 3 weeks, they told us it would take 6 but tummy still is not much smaller, does it go down all of a sudden?

When will she stop getting up during the night - some nights she doesn't but it is really hard to get her to bed at night, her word for food is 'door' and I am not sure if she is using it for an excuse to stay up or is she really hungry? I really don't know where to draw the line and think she may be manipulating us a bit, but I feel so sorry for her I can't be too hard on her - probably setting myself up for a terrible toddler?

Her mood has improved dramatically but she is still super clingy with DH and he can't 'do' anything when she is around as she gets hysterical. He is the one who has looked after her at night as I have a newborn in the midst of all of this (he is 4.5 weeks old).

Any help will be appreciated
Belinda

Nikki~Nathan&Danielle

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Celiac Disease discussion
« Reply #25 on: December 25, 2005, 07:54:16 am »
Hi Belinda, sorry to hear about your dd's diagnosis, but great that you've gotten to the bottom of the problem.  Since I'm the only one on this board with my son having Celiac, I can only give you my perspective.  You may want to check out http://www.celiac.com, there is a message board with a lot of experienced people.

Anyway, once going on the diet (and it has to be completely 100% gluten free to see the results) it took about 6wks for my ds to have poos that were dark, solid and sunk again (we saw positive results a bit sooner), but I'd say 6wks for those changes, his tummy has gone down a bit, but I'm not too sure since toddlers have pokey outey tummy's anyway.  We have terrible night wakings, but not sure if it's linked to celiac or not.  Nathan can also be clingy, but same thing, maybe just normal toddler stuff?

Sorry, I can't be much help, but 3wks does sound a bit too soon to see many changes, I think I just gradually noticed the changes, nothing suddenly dramatic.

HTH :)

Offline mumofboyandgirl

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« Reply #26 on: December 27, 2005, 09:59:23 am »
Hi Nikki

Thanks for your reply, I checked out that website and have posted some questions.

It is so hard to tell the difference between normal toddler behavour/tummy then celiac disease symptoms, thats why it took so long for us to realise something is wrong.

Her tummy has gone down a bit (it was the most noticable symptom) and her poos are getting harder but still as frequent. Her mood is the most noticable thing that I have noticed, she now enjoys playing again and giggles again too.

I guess I just have to keep waiting hey

Thanks again for your help
Be

Offline hallahmay

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« Reply #27 on: January 10, 2006, 21:39:40 pm »
Hello all, hoping to talk to some experienced coeliac parents out there.My second child, Alfie-Richard was diagnosed with coeliac disease about 6 weeks ago, and has since been on a completly wheat and gluten free diet. He was breastfed from birth until he got croup at 10 months and decided to ween himself, however he became ill as soon as i introduced food.(at approx. 5 months) He was never a fantastic sleeper but after he started on solids his night times became a nightmare. He would wake with awful pains in his belly which was often followed by lots of vomiting, this would happen at the very mimimum of 5 times and anything up to 10 tims a night, which obviously meant endless trips to the doctor, which eventually got us to a wonderful peadiatritian who discovered my little chap had coeliac disease. He is now 19 months and was diagnosed at 17 months and i have seen massive changes in him since i started the diet, no more "loose" poos and no more vomiting, just a totally happy and content baby, so here is the "but", he still wakes 5-10 times every night, and will drink between 12-24 ounces of his milk, is this waking habit or is he actually hungry, it`s only 8 weeks into the diet so i`m wondering is this part of the upheavel as his system adjusts? If anyone has any useful advice this very tired Mammy and Daddy would really appriciate it. :wink:
Best Wishes.

Offline mumofboyandgirl

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« Reply #28 on: January 15, 2006, 22:34:23 pm »
hallahmay, the same thing happened to my DD, but she would wake up for food not milk, evenutally I thought it was just a bad habit and one night I said not food do you want me to read you a book, and sure enough every time she woke she asked for a book, then after a few nights she stopped waking. In the beginning was was waking out of need but then it just became a bad habit, if you try to replace the milk with something else you will know for sure. We are now 6 weeks into the diet and DD has improved dramatically although her tummy hasn't gone down yet, and her poos are not solid, but her mood is incredibly different she is like a different child.

In regards to the milk are you using lactose free milk?

A question in regards to weaning and celiac, I have a 2 month old (I know I have a while yet) but wanted to know how I should introduce solids, has anyone got any ideas?

Belinda

Offline hallahmay

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Re: Celiac Disease discussion
« Reply #29 on: January 29, 2006, 21:46:40 pm »
Hi Belinda, thanks for the tip regards the book instead of food, am definatly going to give it a try. As regards weaning your 2 month old, i know some other friends of mine would perhaps peel and wash some fruit (eg. a pear) gently boil it and then blitz it with a hand held electric mixer. Then freeze it in portions in an ice-cube trays, so you could defrost it as you need it and even mix it with breast or bottle milk. Of course you could do the same thing with veg, like, broccoli, carrots, whatever! Coincidentally carrot juice is supposed to be fantastic for the ceoliac digestive system. I hope i have been some help.

                                                                                    Becky.
Best Wishes.