Anyone have a child with Celiac disease

Alexa's GI specialist has mentioned that at her 1 year she wants to test her for Celiac disease because her belly is big pretty often, she gets constipated a lot and because of her SUPER SMALL size....

I was wondering if anyone's DC had Celiac and what their symptoms were....

I have a basic understanding of Celiac disease in adults and their symptoms but not in children.

I'm SUPER NERVOUS

Message edited 12/2/2009 9:29:27 AM.

Re: Anyone have a child with Celiac disease

Maria - My Step sister, and my SIL's family are all Celiac's. My BIL is VERY knowledgeable about the subject - they have three kids 5yrs, 3yrs, 10months. If you like, I can ask him to either reach out to you, or ask if I can have you reach out to him.

He's really an expert on this subject.

Re: Anyone have a child with Celiac disease

Michelle that would be great.

I'm so scared and nervous about this and keep reading conflicting information that you can't really diagnose it this early....

ughhhh..... It like I can't have a skinny baby.. there HAS to be something wrong with her...

I don't know why the doctors HAVE to find somethign wrong and now I'm terrified somethign IS WRONG

Re: Anyone have a child with Celiac disease

My DD had tested positive for Celiac disease based on the blood test they ran, but it was later proved to be negative when they did an endoscopy. So she didn't have it after all.

My DD was tested because of severe constipation issues also. Ironically when you research celiac in children it usually presents with diarrhea, so I wasn't really expecting her to have it. It seems scary at first but switching to a gluten free diet resolves it.

Re: Anyone have a child with Celiac disease

Posted by Blissful

Michelle that would be great.

I'm so scared and nervous about this and keep reading conflicting information that you can't really diagnose it this early....

ughhhh..... It like I can't have a skinny baby.. there HAS to be something wrong with her...

I don't know why the doctors HAVE to find somethign wrong and now I'm terrified somethign IS WRONG

Re: Anyone have a child with Celiac disease

I don't have any experience with this but I just want to send you some of these

Re: Anyone have a child with Celiac disease

Posted by MrsRbk

Posted by Blissful

Michelle that would be great.

I'm so scared and nervous about this and keep reading conflicting information that you can't really diagnose it this early....

ughhhh..... It like I can't have a skinny baby.. there HAS to be something wrong with her...

I don't know why the doctors HAVE to find somethign wrong and now I'm terrified somethign IS WRONG

I'm going to email him and ask if it's alright I give you his contact information.

Re: Anyone have a child with Celiac disease

Posted by curley999

My DD had tested positive for Celiac disease based on the blood test they ran, but it was later proved to be negative when they did an endoscopy. So she didn't have it after all.

My DD was tested because of severe constipation issues also. Ironically when you research celiac in children it usually presents with diarrhea, so I wasn't really expecting her to have it. It seems scary at first but switching to a gluten free diet resolves it.

Re: Anyone have a child with Celiac disease

No advice...just

Re: Anyone have a child with Celiac disease

I'm pretty sure that my friend's son was diagnosed with this at about a year old, but it seemed to have resolved itself (he is 4 now) if that is possible (or it was a misdiagnosis like another poster said....)

It's great that her GI wants to be proactive and diagnose it now, my cousin struggled with GI issues for a long time before he was diagnosed at 10 with Chrohn's disease (normally they don't diagnose that young, but it runs in our family)

Re: Anyone have a child with Celiac disease

Here are some websites with helpful info.

http://www.celiaccentral.org/
http://www.csaceliacs.org/celiac_symptoms.php
http://celiachometest.typepad.com/celiac_home_test/2009/06/celiac-disease-testing-is-crucial-.html

Maria when I get a few minutes here I'm going to FM you. My niece was just diagnosed last spring so I have a lot of info.

Re: Anyone have a child with Celiac disease

I know we have had our differences but I wanted to let you know that all those signs may not be something bad!!

Andrew was always and still is on the very small size. He was only 20 lbs when he was 2. Not until now has he started gaining some weight at 3 1/2.

He always had a big round belly (looked like he was malnourished) and had problems going to the bathroom.

The ped never seemed concerned because he was always on the small side, ate relatively well, and was growing great developmentally. And had no other problems.

Re: Anyone have a child with Celiac disease

A friend of mine has it, I'm not sure when she was diagnosed with it...I feel like your dr just wants to check EVERYTHING which is honestly the best thing he can do... bc honestly if it came up later and it wasn't diagnosed earlier more damage could have been done...try not to worry too much!!!

Re: Anyone have a child with Celiac disease

Posted by greeneyes361708

I don't have any experience with this but I just want to send you some of these

Re: Anyone have a child with Celiac disease

dave's mom is SEVERE celiac....

i know she has told us over and over that a blood test is NOT the way to test for it - it has to be done with a scope...what i don't remember is if it's a colonscopy or endoscopy...that the blood tests can be wrong....as she didn't find out that this was the cause of her problems until VERY late in life... I can ask her for more info if you like...

ANY time dave is sick she reminds us of this...we're like - Arleen - he has a cold, he's not 'suffering from celiac related issues'.... (was hoping that would make you smile, a little glimpse into her insanity)...

Re: Anyone have a child with Celiac disease

Re: Anyone have a child with Celiac disease

Posted by 5ofClubs

I know we have had our differences but I wanted to let you know that all those signs may not be something bad!!

Andrew was always and still is on the very small size. He was only 20 lbs when he was 2. Not until now has he started gaining some weight at 3 1/2.

He always had a big round belly (looked like he was malnourished) and had problems going to the bathroom.

The ped never seemed concerned because he was always on the small side, ate relatively well, and was growing great developmentally. And had no other problems.

Re: Anyone have a child with Celiac disease

Posted by davenjess

dave's mom is SEVERE celiac....

i know she has told us over and over that a blood test is NOT the way to test for it - it has to be done with a scope...what i don't remember is if it's a colonscopy or endoscopy...that the blood tests can be wrong....as she didn't find out that this was the cause of her problems until VERY late in life... I can ask her for more info if you like...

ANY time dave is sick she reminds us of this...we're like - Arleen - he has a cold, he's not 'suffering from celiac related issues'.... (was hoping that would make you smile, a little glimpse into her insanity)...

Re: Anyone have a child with Celiac disease

My friend's 5 year old son has celiac disease. I know he was sick alot as a baby- but I don't think it was related. I also think maybe he can't have gluten?

I could be totally off base.

Re: Anyone have a child with Celiac disease

Celiac is a gluten intolerance from what I understand. Its a form of autoimmune disease. The body cant tolerate the gluten so as a result it attacks the lining of the intestine usually resulting in diarrhea.

dont quote me but I believe that's correct.

Ive delt with bad GI issues my entire life. as a child I always had a "tummy ache" and diarrhea pretty often. finally FINALLY at 12 the doctors took my mother seriously and I was tested for lactose intolerance at Schneider's. That was negative so they slapped the IBS-D label on me.

Finally at 23 I had a colonoscopy and was diagnosed with ulcerative colitis. Always get a second opinion, it's SO important, especially with children who cant always tell you when/if something's wrong, and ESP if the doctor is saying something's wrong but it doesnt seem to fit your DD.


Also -- my sister has a friend from college who didnt know he had celiac disease until he was about 20!!!! Hes now on a totally gluten free diet and feels great They even have gluten free beer great news for a college student


ETS:
I feel very strongly about this -- if your child or anyone you know is diagnosed with "IBS" it's crap. IBS is a label they give when they dont know what's wrong. Find a new doctor. It's kinda like "Colic". We dont know what's causing it so we'll just call it something. There's always a reason, they just havent found it.

Message edited 12/2/2009 11:32:26 AM.

Re: Anyone have a child with Celiac disease

My best friends daughter had this and basically once she changed her diet (emliminating gluten) she was okay.

It took more getting used to for my friend since she needed to change her shopping/buying/eating choices.....but for her daughhter she grew up with it and knows that she cant have the cookie. etc

Re: Anyone have a child with Celiac disease

Re: Anyone have a child with Celiac disease

I would try and see what happens if you eliminate gluten from her diet.

Like another poster mentioned their are so many options for gluten free products.

I don't think you are in NY or NJ but if there is a wegman's by you, stop by because all of the Wegman's brand products state right on the box what it is free of. They also have a decent amount of gluten free products. I would also check out whole foods.

I think with any allergy, getting past the first 2-3 weeks is the hardest and then you become accustomed to the new diet and it doesn't turn out to be as hard as you thought it might be.

Re: Anyone have a child with Celiac disease

Both my sisters have it and so does one of there little boys.. Mys one sister is on here Mydreamisabelle FM her she will be so happy to help you with any thing you need.. My oldest sister got diagnosed 30 years ago so they both know alot about this.. I actually had a fundraiers for this at my home 2 christmas' ago.. Please FM her

Re: Anyone have a child with Celiac disease

I don't have any useful info, but I'm hoping the doctors are just being extra careful and testing just in case. I hope she doesn't have it