Infant Formula

[hannahsue01]

Hi,

We have a family history of diagnosed celiacs. I believe myself and my two daughters may be suffering from celiac. My youngest daughter was born 3 months early and has never eaten what she should from a bottle. They concluded that she has reflux but after being on the stronger medication for about 2 months now she still refuses to eat and has to be tube fed most of the time. My doctor says that formula does not contain gluten but I am wondering if he is wrong since most packaged items seem to contain gluten in some form or another? Does anyone know if formula (she is on similac advance concentrate wich is a liquid) contains gluten?

Thanks

[TCA]

Most formulas are gluten-free, but I would call the # on the can and ask. My duaghter just couldn't tolerate formulas at all. There's no logical explaination, she just can't. You might try a hypoallergenic fomula like Nutramagin, Pregestimil, Alimentum or some of the higher powered ones like Neocate or elecare.

[indyceliac]

When my youngest was a baby he had severe reflux and the only formula he could tolerate was Neocate. Its gluten-free, soy-free, dairy-free. Luckily insurance paid for it.

[KayJay]

Maddie tolerates Nutramigen okay but couldn't until she was 8 months old.

[frenchiemama]

I can absolutely, positively, 100% assure you that Nestle formulas do not contain gluten and I can 99.99999% assure you that other brands don't either (just because I haven't seen them being made with my own eyes, but I would be shocked if they did). Infant formula is regulated so strictly (you can look up the Infant Formula Act online if you want to see the specifics) that there is no way that an allergen like gluten would go unlabeled.

[averyannsmom]

My DD was born 11 weeks early, has acid reflux/gerd, and only tolerated breastmilk for 2 months and never has been good with formula. She is on Alimentum liquid, but is going to peds gastro tomorrow for a hopeful switch to neocate. She eats small amounts and isn't growing as much as she should be. I feel your pain. We do not have to tube feed, but she is very irritable after she eats and will only eat small quantities.

Please see a peds gastroenterologist, if you haven't already. Even for the reflux she should probably be on alimentum or nutrmigen at the very least.

[angielackner]

i know that enfamil lipil doesnt contain gluten...we had to supplement my son with it while we were in the hospital, cuz he was jaundiced and born at 11 lbs 6 oz...so he needed more food than i could give him until my milk came in...i was adamant to the nurses and lactation consultant that if we gave him formula, it HAD to be gluten free! the LC called enfamil and found out that their formula was indeed gluten-free.

angie

[hannahsue01]

Thanks everybody for your answears.....I feel better now that formula shouldn't have gluten in it. I still don't know what the problem is with her feeding. Hopefully the GI Specialist will have some answears for us on Friday.

[Patricia Neal]

I was born in 1931 with celiac disease and fortunately a new peds Dr. came to town who knew what it was but they thought it was associated with diabetes then so I was almost killed with insulin.  However once out of the hospital I was given a formula.  I did some research in the 1970's and found they used ripe bananas that had been dried to a powder.  I have just been doing some food research and found that they are now making ripe banana flour and wonder if that could be used now.  If that was what I had it worked--I still have celiac and some other food sensitivities but I am 87 and still going although I am now recovering from peripheral neuropathy and B12 and folate deficiency which are associated with celiac.  Doctors unfortunately don't know enough about celiac.  Mine did tell me B12 shortages are common in people whose ancestors came from Great Britain and Scandanavia which is the same place prevalent with celiac.

[GFinDC]

On 5/30/2019 at 11:45 PM, Patricia Neal said:

I was born in 1931 with celiac disease and fortunately a new peds Dr. came to town who knew what it was but they thought it was associated with diabetes then so I was almost killed with insulin.  However once out of the hospital I was given a formula.  I did some research in the 1970's and found they used ripe bananas that had been dried to a powder.  I have just been doing some food research and found that they are now making ripe banana flour and wonder if that could be used now.  If that was what I had it worked--I still have celiac and some other food sensitivities but I am 87 and still going although I am now recovering from peripheral neuropathy and B12 and folate deficiency which are associated with celiac.  Doctors unfortunately don't know enough about celiac.  Mine did tell me B12 shortages are common in people whose ancestors came from Great Britain and Scandanavia which is the same place prevalent with celiac.

Welcome Patricia!

The reason bananas helped children with celiac disease is because they don't have any gluten in them.  So that is the only thing that bananas have going for them as far as a baby food goes.  Today it would be better to get a pre-made formula of any brand that is gluten-free instead of just banana flour.

However for yourself or any adults, banana flour is fine to add to the gluten-free diet.  As  long as you are not diabetic that is.  If you happen to be diabetic or watching carb intake, almond flour would be a better choice.

You are right about B vitamins being an issue for many celiacs.  Vitamin D is also a vitamin that some of us have problems getting enough.  For some people digestive enzymes and Betaine HCL can help with absorbing vitamins and minerals.

Edited June 2, 2019 by GFinDC

[cyclinglady]

Patricia,

Thanks for posting!   Imagine dealing with celiac disease for over 8 decades!  Is it easier with all the new gluten free processed foods or harder?   I am just curious.  So many celiacs struggle.  We could use common sense advice from seasoned veteran.  

Have you had following care specifically for celiac disease (antibodies measured)?  From what I understand (as a non-medical person) if you have healed from celiac disease, you should not have those deficiencies unless you have refractory celiac disease, continued exposure to gluten, or another illness.  Two years ago, I kept thinking I was getting gluten into my diet.  I had a repeat endoscopy and found that my small intestine had healed.  However, I was  diagnosed with chronic Autoimmune Gastritis which can lead to deficiencies and cause symptoms comparable to celiac disease. I learned not t9 blame everything on celiac disease.  ?

Again, thanks for posting!  Hope to hear from you soon.  

[Scott Adams]

Hi Patricia, you also might find this article interesting: