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betsy7

Gluten Free Formula

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Hi,

My son and husband both have Celiac Disease. We're expecting baby #2 very, very soon. I'm planning to breastfeed for at least a year and follow a gluten free diet myself (my son's gastro recommended this). But, I want to have a backup formula for supplementing and/or emergencies.

The CSA gluten free book shows that Enfamil products are gluten free, but I wanted to check with other parents to get their feedback as well. I am always uncomfortable when I look at a company's Website (i.e. Mead Johnson/Enfamil, Nestle, etc..) and they don't mention or answer any faqs about being gluten free. I feel like they may tell me individually that their products are gluten-free (I'm still waiting to hear back from them). But, by not stating in print that they are gluten-free, they are safeguarding themselves and leaving open the option to change their minds about whether or not their products are gluten free.

I just want to be 100% sure when it comes to the only food our baby will be eating....

Thanks for any advice!!

Betsy

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I would recommend getting a really good pump, and expressing your own milk for backup and emergencies (but it's definitely a good idea to check out formulas in advance, too).

Most (but not all) babies seem to have trouble adjusting from breast milk to formula--formula is SO much harder to digest.

Best of luck!

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I would recommend getting a really good pump, and expressing your own milk for backup and emergencies (but it's definitely a good idea to check out formulas in advance, too).

Most (but not all) babies seem to have trouble adjusting from breast milk to formula--formula is SO much harder to digest.

Best of luck!

Yes, that's definitely my plan... but I want to have a backup on hand if for some reason we need it.

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There is a formula that is gluten free along with alot of other allergy triggers.

It's called Neocate and is not available over the counter like Enfamil or Similac and it's very pricey. Insurance will cover it but documentation of prior formulas or breast milk must be mentioned along with the reaction. If the child has serious GI issues than that's different.

IT is a prescription type formula and can run about $30-40 a can. ( I work in pediatrics and know the horrors of ins)

Here is a link with the nutrition information :

www.shsweb.co.uk-neocate-prof-docs-neocate.pdf

or just google Neocate infant formula

Best of luck

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We use Similac Advance w/Iron (liquid concentrate) and we have been assured that it is gluten free. From what I have been told....most all infant formulas are gluten-free but I would contact the companies directly to be sure. We are currently using Pedia Sure wich I know is gluten-free but that is for older babies. I agree with the above and try to pump extra milk if you can. The medella pumps are pretty good....I have used two of them....one in the hospital and one that wic gave me and they both worked well. To store the milk in the hospital they had us use bottle liners and close them with a tiny rubber band. Good luck and congradulations on your new addition to your family.


Myself-Age 25....I have had symptoms since at least 1998 if not since infancy (was diagnosed with malnutrition as a small child)...Positive results with gluten free diet!

Hannah-Age 5.....Has symptoms....Inconclusive blood tests....Positive diet response to both gluten free and lactose free!

Grace-Age 1.....Born at 29 weeks due to me having celiac....Has reflux and a feeding tube.

Husband-Not Celiac......has found that he does feel better when not eating allot of gluten.....is gluten free at home.

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We went through every formula you can imagine with both of our kids to use as backups and supplements and even the gluten-free ones were hard on their tummies. Hopefully you won't have as much trouble as we did. We ended up on Neocate, which is very specialized, but the only thing my daughter could handle was breastmilk til she was 16 mos. My son nursed til 20 mos. I applaud your efforts of going gluten-free when you don't have celiac. I did the same and then discovered I have gluten issues too. Good luck!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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I'm curious--would anyone know which (if any) formulas contained gluten in the early 1960's?

My mother was told I was allergic to cow's milk because of diarrhea from Similac, so I was put on soy and did fine. But when I was a toddler, someone gave me milk and I was fine, so she gave me regular milk after that with no problems.

She is now wondering if what gave me the diarrhea in the first place was gluten in the Similac, but I don't know how to find out if it ever had gluten.

Anybody know?

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I'm curious--would anyone know which (if any) formulas contained gluten in the early 1960's?

My mother was told I was allergic to cow's milk because of diarrhea from Similac, so I was put on soy and did fine. But when I was a toddler, someone gave me milk and I was fine, so she gave me regular milk after that with no problems.

She is now wondering if what gave me the diarrhea in the first place was gluten in the Similac, but I don't know how to find out if it ever had gluten.

Anybody know?

I saw on the nestle good start website that their formulas are gluten-free also.

Celina


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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My daughters GI doctor swears up and down that for years he worked where they studied the effects of formulas on babies and (his words not mine) NO formulas have wheat or gluten besides the ones that contain cereal!! I KNOW this is incorrect because I picked up a can the other day and the first ingredient I saw was wheat. I almost passed out because my son had severe vommiting problems as a baby. He was tested for everything and we even thought he had Eosiniphilic Esophogitis at one point, but he tested negative for everything. Well he still throws up and they swear when they did the biopsy for EE that they would have seen Celiac if he had it, but the kid was only 2 and it probably would not have showed up.

They actually checked his records for me because my daughter is being tested by the same GI's office, and they tell me that there were no signs of Celiac, but I have yet to meet any lab or anything that will diagnose (or look for something) that was not ordered, so why would they even being looking for Celiac. I could be wrong on this one, but usually if they are testing for EE that's all they will test for.

If my daughter comes out negative then we are getting a new Pediatric GI. Our problem is that there are very few of them in our state, and as it is we have to travel an hour and a half to get to the one we go to, and our insurance will not allow us to go out of state, unless we've exhausted all the instate options grrrrrrrr. Lets hope they can find something, because she's got DH so I know she's got Celiac.

Good luck and I'm sure you'll have good luck with breastfeeding. I was unable to breastfeed any of my babies exclusively (I just didn't make enough milk no matter what we tried-and trust me we tried it all), so anyone who can exclusively breast feed is a very lucky person (in my opinion ;))


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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