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

Gluten Free Tube Feedings

PennyNC

Recommended Posts

PennyNC Newbie
PennyNC
Posted

Hello,

I am new to this list serve. We have a patient that is PKU and may possibly have Celiac. She is to have a biopsy via colonscopy today. She has chronic diarrhea. PMH: Chronic GI problems, Gastroparesis, Seizure disorder, chronic anemia and chronic n/y and hyperkalemia.

Na and K+ as we speak are wnl now.

We have her on an elemental formula right now due to her PKU and n/v and no po.

What formulas are gluten free if we go with tube feeding other than elemental??

Thanks for any input you all may have...

Penny :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Hello,

I am new to this list serve. We have a patient that is PKU and may possibly have Celiac. She is to have a biopsy via colonscopy today. She has chronic diarrhea. PMH: Chronic GI problems, Gastroparesis, Seizure disorder, chronic anemia and chronic n/y and hyperkalemia.

Na and K+ as we speak are wnl now.

We have her on an elemental formula right now due to her PKU and n/v and no po.

What formulas are gluten free if we go with tube feeding other than elemental??

Thanks for any input you all may have...

Penny :)

Thank you thank you for having this concern for your patient. The best way to find out what is safe is going to be to go right to the manufacturor of the products you are considering using. There should be phone numbers available on the product or your hospitals pharmacy will have them. Again thank you for your concern, many of us are scared to death of hospitals because they don't understand the need to check everything from barium to food to OTC meds and scripts.

frenchiemama Collaborator
frenchiemama
Posted

What age is this person?

Nestle's pouch products are all gluten-free, as are all of the can products that we make at our plant. Peptamen Jr. is gluten-free for sure, if this is a child you are talking about. Then there is all of the Nutren, Replete, Nutrihep, Probalance, etc, etc,etc. Nestle's products all have gluten free right on the label.

TCA Contributor
TCA
Posted

It sounds like this patient has a LOT of issues. My daughter does too. It took months to find anything she could tolerate besides breastmilk. I went gluten-free and the resulting milk was something she could tolerate. Sometimes kids with celiac have other food issues, so be careful. Megan is now on Neocate 1+. It mixes to 30 kcal/oz, but we do it at 25 for her since she is GJ fed. Just be aware that other formulas may be too much for her to handle. Megan tried Pregestimil, alimentum, neocate, etc. before finding this. She also has trouble with eggs and dairy, so that might be why. Good luck. Feel free to PM me if I can help any. I've been there as a parent and am so glad to see you searching for answers.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. dixonpete
      0

      Inoculation and video development

    2. RMJ
      - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
    3. Colleen H
      - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

      Hello I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet. Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I...
    4. sleuth
      - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Of course my son is on a 100% gluten free diet. I wish his symptoms were not debilitating as there are right now. He cannot work, even when a miniscule of cross contamination occurs. It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc. It's literally neurological inflammation. Not to be taken lightly here. We...
    5. Scott Adams
      - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-F...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,841
    • Most Online (within 30 mins)
      7,748
    Humble V
    Newest Member
    Humble V
    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

    • RMJ
      Nausea

      By RMJ · Posted

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • 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.