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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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My 2 almost 3 month old is on Similac Alimentum due to a milk allergy, but since I've got a gluten intolerance, I'm also worried it might manifest itself with him.  Its supposed to be easy on the the tummy for babies with food allergies... But I was wondering is it really without gluten?  Or ANY formula for that matter?  I mean when I read the can I noticed it said 'Casein' with some variation of saying it was made more digestible...  (How is that milk-free?)

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it's not milk free, but it may have been pre-digested so as not to trigger the response that your son would experience.  I have not seen ANY formula contain gluten (though I admit this is second hand information, hopefully moms who had to verify formula was gluten free for their little ones can help).

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If your son is tolerating Alimentum well, that sounds like a good sign. My daughter had extensive digestive problems and moderate neurological problems starting when she was just a few weeks old and exclusively breast feeding. She still had problems even after I'd completely stopped eating dairy (though that did help a little bit). At five and a half months, an allergist and pediatric GI doctor both agreed that we should try formula, since she was obviously reacting to something in my breast milk. Her food allergy tests were repeatedly negative. We did a brief trial of Alimentum, and she couldn't tolerate that either. My understanding is that it is milk-based, though the proteins are broken down extensively to make it easier to digest. I have no idea if it contains gluten, though I'd be surprised if it does. If you call the manufacturer, they should be able to tell you.

We finally ended up putting my daughter on Neocate, which is an amino acid formula with no milk (or gluten or other proteins) at all. Her recovery was so rapid that everyone was astounded. The neurologist discharged and GI both discharged her after six months on Neocate because she was doing so well. But the problems returned gradually once she started solids...and here we are another three years later, when she's just been diagnosed with celiac. In retrospect, that pretty much explains her entire health history!

This is a long-winded way of saying that if your baby seems to be doing well on Alimentum, that's great and there's probably no need to switch formulas. But if he does start having trouble digesting it, it's good to know that there is another option that has no milk in it whatsoever. Neocate is super-expensive, though - like over $220 per month in the U.S. - so it's definitely not a formula of choice unless it's really necessary. We were lucky that our insurance treated it like a prescription and paid for most of it.

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Thing is, I'm not sure its helping, but we tried soy and he wouldn't even swallow that (I don't think he liked the flavor of it... not that I blame him, I don't even know how he tolerates Alimentum.  It smells like crap!)... he's got a lame *insert a stream of four letter words* pediatrician I do not trust in the slightest, but stupid insurance problems won't let me have the one I do trust with my baby!

I'm just scared to death for my little one, simply because I have so many problems, that people don't seem to know what's up with me... I don't want life to be like that for him, and I am assuming to be on the safe side that he has the same intolerances/allergies that I do.  

 

As for the Neocate, my sister-in-law's sister had a baby with wheat/gluten, soy, nuts, dairy and a few others... is the Neocate soy free?  Because they wanted to put the baby on formula but all of them have soy so the mother is continuing to bf, though a lot of the things stay in her system a while, so the improvement for the baby despite the mom keeping to a blan diet isn't drastically improving...

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I can't comment on the formula (I breast fed for over two years), but since my husband was gluten-free and I had food allergies (now celiac disease too), I followed my allergist's advice on how to introduce foods to my daughter.  No solids until she was 8 to 9 months, then veggies first month, then added fruit for another month,  then meats.  No grains of any kind until she was a year old.  No eggs, dairy or wheat until she was two years old.  Her pediatrician balked, complained, etc., but the end result was worth it.  When she was four he mentioned that she had the "thinnest chart", meaning that she was so healthy.  She never went in for illness until she started preschool (all those shared germs).  She's healthy, slender and active as teen now.  She's consuming little gluten as we are are gluten-free household.  I only buy her gluten products in packages.  She also eats gluten at her friend's homes and at restaurants.  She has not be tested for celiac disease yet. 

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