| Posted By |
Message |
oneday
<3
Member since 5/05 4319 total posts
Name:
Pam
|
Celiac Disease - Anyone know anything about it?
I am just wondering if anyone knows anyone whose child has celiac disease or if you know anything about it. SIL's daughter has been getting tested left and right to see why she isn't gaining weight. She's about 1 1/2 and she apparently doesn't even show up in a percentile for her age and weight anymore.
So, they are trying to figure out what it is and my SIL really thinks this is probably what it is (although the tests so far have shown she's negative for it, the Dr's said that may not be the case and they seem to be thinking that is what it is too.) Poor thing has been through so much blood testing and a biopsy last week and I think she goes for an appt with an immunologist this week.
At any rate, I'm just wondering how difficult a thing to live with this would be? They tell me she would have to be on a gluten free diet, but beyond that, I don't really know and I thought maybe someone here might know something. DH is generally the one who talks to his mom and sister, so most of the info I've gotten is through him (and I sometimes think maybe he doesn't pay attention or just doesn;t ask the questions I would.)
TIA for any info you can give me!
|
Posted 11/1/05 1:55 PM  |
| |
|
Long Island Weddings
Long Island's Largest Bridal Resource |
Kris
LIF Adult
Member since 5/05 1051 total posts
Name:
Kristine
|
Re: Celiac Disease - Anyone know anything about it?
My best friend was diagnosed with this approximately 5 years ago. You can live with it- but I would imagine a child would be very difficult.
She can not eat anything with wheat or gluten. Basically no pre-packaged foods, restaurants are limited, etc. There are tons of support groups - which is how she learned the most about it.
Check out this website for info
http://www.celiac.com/index.html
|
| Posted 11/1/05 2:31 PM |
| |
|
lorimarie
AHHHHHHHHHH!!!!!!!!!!!
Member since 5/05 3753 total posts
Name:
Lori
|
Re: Celiac Disease - Anyone know anything about it?
My daughter is being tested for this right now. She has only gained 3 ounces since August and they're concerned.
I don't know much about it as I don't want to jump the gun. However, maybe try webmd.com - they always have a good amount of info!!!
|
| Posted 11/1/05 7:25 PM |
| |
|
dee7772
My Loves
Member since 5/05 4852 total posts
Name:
|
Re: Celiac Disease - Anyone know anything about it?
I just havea question about this, does your babies eat alot of food, or are they picky eaters? I am only asking becasue my SIL's son seems to have the same symptons, but he doesn't eat alot, but loves bread and that is about it. He has gained about 3 pounds in a year.
|
| Posted 11/1/05 8:17 PM |
| |
|
DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
|
Re: Celiac Disease - Anyone know anything about it?
I don't have experience with that specific problem but my nephew has life threatening food allergies and has become well adjusted. They shop at regular supermarkets as well as trader joes and natural food stores. There is so much out there now. He is allergic to dairy, nuts, any milk product in anything, eggs, beef, lamb etc.
|
| Posted 11/1/05 9:26 PM |
| |
|
lorimarie
AHHHHHHHHHH!!!!!!!!!!!
Member since 5/05 3753 total posts
Name:
Lori
|
Re: Celiac Disease - Anyone know anything about it?
Posted by dee7772
I just havea question about this, does your babies eat alot of food, or are they picky eaters? I am only asking becasue my SIL's son seems to have the same symptons, but he doesn't eat alot, but loves bread and that is about it. He has gained about 3 pounds in a year.
She eats a "decent" amount. She pretty much refuses jar food at this point - vegetables are non-existent as she refuses those also. Chicken nuggets, grilled cheese, cream cheese and jelly sandwiches is all she'll eat. I can get a yobaby yogurt in her on occassion but her fav's are cheerios (she'd live on them), veggie crackers and veggie wagon wheels seem to be a staple also.
She's had diarrhea for about a month now so she isn't absorbing any of the nutrients from the food. Heightwise she's fine - 75% but weight she is only 25% and with a 3 ounce gain in 3 months they aren't happy about it.
It could be celiac disease or he even mentioned what they call toddler diarrhea where their bodies don't absorb the food - it just goes through them which is fairly common.
I'm waiting to hear.............
|
| Posted 11/2/05 9:01 AM |
| |
|
emilain
UNREAL!!!!!!!!
Member since 5/05 4457 total posts
Name:
Mama
|
Re: Celiac Disease - Anyone know anything about it?
celiac is an allergy to wheat products (pastas, breads, flours, and lots of prcocessed foods) Kids with this disease tend to be on the smaller side and their diet must be very modified.
Message edited 11/2/2005 9:10:06 AM.
|
| Posted 11/2/05 9:08 AM |
| |
|
colesmom
Brady's mom too!
Member since 5/05 1989 total posts
Name:
Lea
|
Re: Celiac Disease - Anyone know anything about it?
A friend of mine has this (an adult) -- the good news is that wheat and gluten free foods are much more widely available now. Wild by nature has everything you could imagine from chicken nuggets to pasta to snacks that are appropriate for that diet.
Good Luck!
|
| Posted 11/2/05 9:20 AM |
| |
|
oneday
<3
Member since 5/05 4319 total posts
Name:
Pam
|
Re: Celiac Disease - Anyone know anything about it?
Thanks for all of your replies. Yeah, she is a pretty picky eater and doesn't seem to care much about eating. I know in recent weeks, it sounds like she's been pushing away things like breads and cereals. I'm not sure what else she's been eating. I know they try and get her to take Pediasure.
Besides her being a little peanut, she seems totally fine. She was running around last night when we saw her and climbing stairs and dancing. I just feel so bad for my S&BIL. I know it's gotta be hard on them to not really know what the problem is for sure. A few weeks ago the doctors tested her for Cystic Fibrosis and I was sooo worried for her, but thank goodness that wasn't it. I think at this point, they would be ok if it's Celiac Disease, just so they could know and then deal with it instead of continuing to go though all the testing and wondering.
But thanks again for your replies, I appreciate it.
|
| Posted 11/2/05 9:24 AM |
| |
|
Kris
LIF Adult
Member since 5/05 1051 total posts
Name:
Kristine
|
Re: Celiac Disease - Anyone know anything about it?
IF they think it might be celiac, why don't they try to eliminate gluten and wheat from her diet for a couple of weeks and see if the diarrhea goes away.
|
| Posted 11/2/05 3:17 PM |
| |
|
Ambersmom
Straight up nasty
Member since 5/05 7740 total posts
Name:
Sharon
|
Re: Celiac Disease - Anyone know anything about it?
Hmmmnnn...now you have me wondering because Amber isn't picking up weight at all and she EATS more than my husband and I do...she eats about seven decent sized meals a day. I have no faith in my current ped. and I'm switching, so maybe I'll suggest this to him.
|
| Posted 11/2/05 3:28 PM |
| |
|
Suezboss
LIF Infant
Member since 5/05 370 total posts
Name:
Still SueZboss
|
Re: Celiac Disease - Anyone know anything about it?
Posted by Kris
IF they think it might be celiac, why don't they try to eliminate gluten and wheat from her diet for a couple of weeks and see if the diarrhea goes away.
Celiac is not an "allergy" to Gluten, it is an "Intolerance" to it. (slight difference). it basically means that your body treats Gluten (from Wheat, Rye, Barley and Oats, although PURE oats is a controversial) as a poison.
DO NOT start a gluten=free diet until you are tested for it (the 2 most common tests are the blood test, and THEN should be followed up with a bi-opsy of your small intestine). If you do a GF diet before the tests are done, you could get a false negative.
Check out http://www.csaceliacs.org/ or http://www.celiac.org/ They have a lot of information on the disease, as well as support groups. Also, on celiac.com (not org) is a support group for parents of celiacs, called "R.O.C.K., Raising our Celiac Kids" which is very helpful also.
Hoep this helps.
|
| Posted 11/27/05 1:10 AM |
| |
|
Kris
LIF Adult
Member since 5/05 1051 total posts
Name:
Kristine
|
Re: Celiac Disease - Anyone know anything about it?
Posted by Suezboss
Posted by Kris
IF they think it might be celiac, why don't they try to eliminate gluten and wheat from her diet for a couple of weeks and see if the diarrhea goes away.
Celiac is not an "allergy" to Gluten, it is an "Intolerance" to it. (slight difference). it basically means that your body treats Gluten (from Wheat, Rye, Barley and Oats, although PURE oats is a controversial) as a poison.
DO NOT start a gluten=free diet until you are tested for it (the 2 most common tests are the blood test, and THEN should be followed up with a bi-opsy of your small intestine). If you do a GF diet before the tests are done, you could get a false negative.
Check out http://www.csaceliacs.org/ or http://www.celiac.org/ They have a lot of information on the disease, as well as support groups. Also, on celiac.com (not org) is a support group for parents of celiacs, called "R.O.C.K., Raising our Celiac Kids" which is very helpful also.
Hoep this helps.
If you saw my first post- I KNOW Celiac is not an allergy, as my best friend has it. It seemed as though the dr. was unsure as to what was going on, which was why I suggested the gluten elimination diet. It is possible that she has an allergy and not necessarily Celiac. If the diarrhea went away from the GF diet it could explain some things.
|
| Posted 11/27/05 4:45 PM |
| |
|
emilain
UNREAL!!!!!!!!
Member since 5/05 4457 total posts
Name:
Mama
|
Re: Celiac Disease - Anyone know anything about it?
Posted by Suezboss
Posted by Kris
IF they think it might be celiac, why don't they try to eliminate gluten and wheat from her diet for a couple of weeks and see if the diarrhea goes away.
Celiac is not an "allergy" to Gluten, it is an "Intolerance" to it. (slight difference). it basically means that your body treats Gluten (from Wheat, Rye, Barley and Oats, although PURE oats is a controversial) as a poison.
DO NOT start a gluten=free diet until you are tested for it (the 2 most common tests are the blood test, and THEN should be followed up with a bi-opsy of your small intestine). If you do a GF diet before the tests are done, you could get a false negative.
Check out http://www.csaceliacs.org/ or http://www.celiac.org/ They have a lot of information on the disease, as well as support groups. Also, on celiac.com (not org) is a support group for parents of celiacs, called "R.O.C.K., Raising our Celiac Kids" which is very helpful also.
Hoep this helps.
most of the time docs recommend elimination diets before tests are done, it's kind of like a chain of command, why test or draw blood if it is something in the diet which can be controlled. exposure will show up even if you have eliminated it from your diet months before. When babies are very young they try dairy elimination, then usually wheat, then processed foods, etc. After all said and done if no improvement after all these dietary changes, then testing is introduced.
Message edited 11/27/2005 5:43:47 PM.
|
| Posted 11/27/05 5:42 PM |
| |
|
