Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neocate Advice, Help, Or Stories Needed

AllForEmily

Recommended Posts

AllForEmily Newbie
AllForEmily
Posted

I am very new here, and we don't have a diagnosis on what is causing my 13month old daughter's GI issues. She has been on Neocate Infant formula since she was 10months old, and she is finally gaining and growing well. The problem is that the manufacturers of Neocate changed this formula very recently, and very soon we will not be able to get any of the old formulation from any source. Emily cannot tolerate the changes to Neocate, and we have had no success changing her over to Neocate One+ or even EleCare.

If your baby/child is having issues with the new Neocate formulation or you know someone who is having issues, please let me know. The manufacturer rep told me they will NOT be making the old formula anymore, and they implied that my baby was one of the only ones not able to toleratet the new version. I just don't believe that!

I am begging for help here. I just don't know what we will do for Emily once the very limited supply of the old version of Neocate is gone.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Tony'sMom Rookie
Tony'sMom
Posted

Threefly, is that you?

It's Amyd from the other board. I've seen your posts about DB but don't have any advice for you. I hope you get the answers you need soon!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I'm so sorry to hear all the trouble you're having. I have no experience with Neocate, but there are so many moms with celiac who breastfeed, I wonder if one might be able to pump some milk for your daughter (and if the mom has celiac, you'd know that the milk would be gluten-free, right?).

There are a few mother's-milk banks in this country--5, last time I checked--but you might have better luck getting in touch with someone from the LaLeche League. For something like this, where your daughter's life depends on it, you just might be able to find someone who lives near you who is willing to help.

Also, if you did breastfeed her yourself, you can probably relactate with a pump--it sounds horrible, but it's really not so bad!

The only other thing I can think of is to call the maker of Neocate and beg (and have your daughter's pediatrician call them , too).

Sorry I can't come up with anything else. Good luck!

AllForEmily Newbie
AllForEmily
Posted
  • Author

Hi Amy! Yes, it is me! My desperation is oozing to all parts of the internet!

Alison--I answered your other post, and I am going to call about relactating and/or milk banks. Thanks for the suggestions!

TCA Contributor
TCA
Posted

My daughter has some severe eating issues too. We have tried every formula except Neocate (That's next). We have tried Elecare unsuccessfully too. My daughter has a heart condition, celiac, and a feeding tube. The drs. forced formula on her because they wanted more calories than breast milk could provide. She just got sicker and sicker until I took her off of all supplements and went on a gluten-free diet myself and pumped for her. The difference in her was amazing. If you can relactate at all I would strongly urge you to do so. I'm an engineer, and very analytical by nature. I have even done charts and graphs of her weight and diet to prove to the doctors that this is working. They are amazed at how well she is doing now. Last month I started pureeing avocado and mixing it with the breast milk for fortification. This caused constipation, so I added Gerber Prunes and this mixture is working great. This is only for the feeding tube, so no I don't make her eat that! :) During the day I give her breast milk with a little rice cereal for extra calories and vitamins, but she couldn't tolerate that until I went gluten free. She will be 13 mos. next week. Trust me, I know what a pain pumping is, but the difference I see in her is so worth it. I breast fed my son until he was 20 mos. because of GI issues and never regretted it.

I have some breast milk in the freezer from before I was gluten free. If you want iut you are welcome to it. I don't know where you live, but I'm in Alabama. I just can't bring myself to throw out that liquid gold! We don't have any banks close to me. I know you don't know me and you're welcome to have it tested, but I am a clean freak and disease free, unless you count celiac, which is not transferred by breastmilk! :P It would not be gluten free though. I was not gluten free with my son and he did fine, but my daughter had open heart surgery at 9 days old and her issues were more severe.

Just let me know if you want it and we'll figure out a way to get it to you!

AllForEmily Newbie
AllForEmily
Posted
  • Author

Thank you! Since we are not sure about celiac, I'm hesitant to try anything that is not gluten free.

At one point, the GI dr was thinking of a feeding tube. Pardon my ignorance, but would this help Emily tolerate this formula, or would they try an entirely different "food"?

Before you try Neocate, you might want to know this: The latest news I got from the Neocate people is that the old Neocate had a combination emulsifier: soy licithin and DATEM (Di-Acetyl Tartrate Ester of Monoglyceride). The new Neocate infant has an entirely different emulsifier called CAEM. Neocate Jr and Neocate One+ both have DATEM. Elecare uses DATEM.

I am convinced that Emily's reaction has something to do with the emulsifier. Nothing else makes sense!

TCA Contributor
TCA
Posted
Thank you! Since we are not sure about celiac, I'm hesitant to try anything that is not gluten free.

At one point, the GI dr was thinking of a feeding tube. Pardon my ignorance, but would this help Emily tolerate this formula, or would they try an entirely different "food"?

Before you try Neocate, you might want to know this: The latest news I got from the Neocate people is that the old Neocate had a combination emulsifier: soy licithin and DATEM (Di-Acetyl Tartrate Ester of Monoglyceride). The new Neocate infant has an entirely different emulsifier called CAEM. Neocate Jr and Neocate One+ both have DATEM. Elecare uses DATEM.

I am convinced that Emily's reaction has something to do with the emulsifier. Nothing else makes sense!

i don't know what all of Emily's issues are, but a feeding tube is more for kids who need LOTS of calories or kids who refuse to eat. There are some enteral (tube only) formulas out there. Compleat Pediatric (yes, that's how it's spelled) is one they tried for Megan, but she projectile vomited it like she did everything else. It is gluten free, but she couldn't handle it. The tube has been great for megan, but she requires so many calories that she just can't eat enough in a day to reach her goal. Plus she has some sever gagging and choking issues that prevent her from eating baby food so far.

Have you considered relactating? I know it's a pain, but it's the only thing that has worked with Megan. I would offer to share some gluten free milk, but I'm only a day ahead of her and can barely keep up. sorry!

We started of with an NG tube, then did NJ and finally got the G tube. I wish we had started with the g tube. The others were horrible experiences.

Let me know if I can help in any ay.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

Wow... I can't believe they're changing the Neocate formula. That stuff was a GODSEND for us with our daughter!!! She had bloody stools with every other formula we tried. Before the old formula is completely obsolete, I would recommend checking eBay for cans of the old formulation. We bought our daughters formula on eBay for quite a few months before our insurance agreed to cover it and we never had a problem. I know this seems risky, but it was really our only answer and it's about half the price then of the drugstore prescription.

Best of luck to you!

Guest tracey and emma
Guest tracey and emma
Posted

We have had neocate for 2 years now.. even get it here in germany. i had not been told they were changeing it.

does anyone have any idear when it is being changed. It could make a huge differance to emma as well.

I have not noticed any differance so far but we are increaseing to strenth so an now a little conserned.

i will ask on my support group as well, see if any of the mums there have heard anything. will let you know

tracey

sarahjo Newbie
sarahjo
Posted

hi i have daughter that gets neocate plus through her g-tube. she seems to tolerate it well, i have never tried the other kind. we were on nutramigin, but it contains milk. (she is allergic) it is very expensive. well i wish you good luck.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.