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Gluten Free Tube Feedings


PennyNC

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PennyNC Newbie

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 :)


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ravenwoodglass Mentor
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

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

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.

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  • Posts

    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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