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Hi I Am New With Alot Of Questions


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23 replies to this topic

#16 angel_jd1

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Posted 10 June 2004 - 09:17 AM

What kind of tests are you planning on getting for your little one? If you are planning on the blood pannel, the baby will have to be on gluten to have accurate test results.

You might want to push to at least get the blood drawn while he is still on gluten.

Turn into a "psycho mom" if you have to. Rant and rave at the doctors. MAKE them hear you. You are the only person who can be an advocate for that little one. He is depending on you to help him get better!!

Best of luck!!
-Jessica
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Jessica
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#17 Boojca

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Posted 10 June 2004 - 10:13 AM

I have to agree with Jessica. Stand in that crowded waiting room and say, "You mean to tell me, bc YOU have personally never heard of this VERY common disease that 1 in 150 people has, that you are not willing to run a simple blood test???" Let's see how they move then....

You HAVE to push this, it's not something that can wait. Your baby needs you. My son is 2 1/2 and should be over 30 lbs. He weighed 23 lbs when I brought him in, do not let your child waste away. Celiac Disease destroys your small intestine and does not allow the body to absorb anything you've eaten, no vitamins, no minerals, no calories, no nothing. Far worse things can happen to your baby by not knowing this, including literally starving to death. If you go gluten-free just know that you'll have to reintroduce it well before July 26 to get an accurate blood test. Otherwise she will come back testing negative and you'll be back to square one with them thinking you are crazy. There is no reason you have to wait that long, they can write you a referral slip to have the blood drawn at your local hospital and they then send the blood out to be tested (and demand the TTG test, it's the most accurate blood test) and then the results will come back. No appointment necessary.
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#18 ryebaby0

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Posted 11 June 2004 - 12:12 PM

Of COURSE there are people in Lafayette with celiac disease -- good heavens, I live in a dinky city in PA and every other day somebody tells me about their neighbor, their teacher!! We're everywhere!! :) It's as common as diabetes!

Your son will be fine. You are doing a great job, but it doesn't happen overnight. He will literally never really miss the food he never had, and 21st century children often have food allergies/issues so he's not going to be the "weird" one when he gets to school. Try not to borrow trouble; today's is sufficient for the day! There is going to come a time when you realize that you've gotten the hang of it; when you feel blessed that you had the good sense ("mom-radar") to know something was wrong and get an answer. You are off to a good start, so be gentle with yourself and try not to learn everything the first month, or your head will explode!

Joanna
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#19 KAthyB

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Posted 13 June 2004 - 02:25 PM

Hi Amy, Hang in there! I know you are overwhelmed right now but when you and the baby can handle it go for further testing. As a mom of a recently diagnosed 18 year old who was starving to death before dx'd I think the only way to justify the demands of a gluten-free life is testing. Babies don't even know they are biopsied and I know you don't want him to go through the gluten challenge but it is worth it. My daughter is getting ready to go off to college and in order to get special food accomodations the school requires a copy of the tests confirming the dx in order to use the funds available through the ADA. I know it seems a long way off but this may come up when he starts Kindergarten. I think JELLO jigglers might be a soothing finger food for a teething tot although it has been awhile since I had a baby around. I make them for my daughter and her friends frequently and they go over well.
Good luck, God bless and stay strong with the doctors!
Kathy
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#20 AmyandSabastian

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Posted 14 June 2004 - 05:32 AM

Well what is weird and made the doctors laugh at me is that Sabastian as you can see in all the pictures is not wasting away. IN fact his belly is soooo swollen that he was in the 110% for weight. When we went to a gluten-free diet his belly went down in 3 days and he LOST 3lbs. And as yall know for a baby is ALOT. Now he is in the 90% for weight and 100% for height so he is right on track. After speaking with the doc that dx'ed (a close friend of the family and 3000 miles away) he convinced me NOT to get Sabastian tested. That it was a waste of my time for right now and wasnt worth putting a 6 month old through going back to gluten (all the pain he was going through) and needle sticks and biopsys, wasn't worth it. And I wasn't ok with putting him under at such a young age for the biopsy with all the risks. So he talked me into waiting till he can tell me his tummy hurts before reindroducing gluten along with getting the tests done. So I am going through the emotional roller cooster ride of my life dealing with gluten-free diet.
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Amy (25) and Bryan (26)....Gluten Free Aug 1 2004
Sabastian (8 months).... Gluten free May 17 2004

Lafayette, La (The Cajun HeartLand)

It's Just Food!

#21 lovegrov

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Posted 14 June 2004 - 07:21 AM

Amy,

Your doctor was actually right to refuse to test your child. Everything I've ever read says the blood tests are not accurate until 18-24 months. Some doctors even say 30 months.

richard
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#22 dianne

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Posted 14 June 2004 - 12:37 PM

:rolleyes: Amy,
I think it's great that you and your husband are going gluten-free. I have a comment about Frito-Lay products. If you call the toll-free customer service number on the package, they will send you a list of all their gluten-free products. Just ask. Good luck!

Dianne
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#23 celiac3270

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Posted 14 June 2004 - 01:48 PM

I think it's great that you and your husband are going gluten-free. I have a comment about Frito-Lay products. If you call the toll-free customer service number on the package, they will send you a list of all their gluten-free products. Just ask. Good luck!


Get the list, anyway, but to get you started, these products are gluten-free:

- Cheetos
- Fritos
- Lays
- Wavy Lays
- Lays Stacks


Frito Lays does warn, however, that even their gluten-free products are produced with equipment that also handles non-gluten-free products, such as Doritos. Sensitive Celiacs might want to stay away from Frito Lays products for fear of contamination.

While on contamination, that is good that your entire family is going gluten-free. At least at home, that'll be helpful...first off, to avoid contamination, and second, so that you don't need to check what's gluten-free in the cabinets and what isn't.....
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#24 angel_jd1

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Posted 14 June 2004 - 01:51 PM

Nacho Cheese Doritos seem to be the only NON-gluten-free dorito. The others are fine, with the exception of the cross contamination issue that has already been mentioned ;)

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas


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