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Gluten Free Tube Feedings

PennyNC

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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 :)

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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.

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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.

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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.

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      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
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