Questions about EnteraGam

Hello! My daughter, Lindsay, was diagnosed first with Primary Sclerosing Cholangitis 5 years ago, and then a year later with Ulcerative Colitis. Lindsay is now 11 years old and she has come a long way. She controls her UC with the SCD diet and some supplements. She is diarrhea free, but not symptom free as she suffers from constant headaches and fatigue.

I guess from her autoimmune problems, Lindsay seems to catch every illness that goes around the school. Whatever the illness is, even if it a stuffy nose and sore throat, always leads to loose stool for her. And that can linger a couple weeks.

Anyway, Lindsay sees an Integrative doctor who recently gave her a prescription to Enteragam. I had never heard of it. Lindsay’s gastroenterologist never mentioned it, even though she really pushes every other drug that is out there. He knows that my husband and I want to keep avoiding medications as long as we can. He explained that Enteragam is a prescription food. It is powder that you can mix in a drink or soft food. It never gets absorbed into the blood, so there is no chance of side effects.

So, Lindsay came home sick with a virus and being run down and the diarrhea started. I gave her this powder with coconut water to hide the taste, which wasn’t too bad I guess because she didn’t complain. By the next morning she had formed stool! It was amazing!

I am writing to hear how others have used enteragam and if it is in fact side effect free. I know she was not in a crazy big flare but was very happy how it worked. I kept giving it to her once a day and as she got better it worked too well and her poop started getting hard so that was no good. But she didn’t need it anymore I guess.

Our doctor did say that many insurance companies do not cover this prescription and if they don’t it is expensive. We were lucky though that ours covered it!

If anyone can write back with their experience using enteragam – how they use it, any side effects there may be. That would be so helpful to us. Do you take it even when you do not have diarrhea or only when it flares up? Does anyone else’s child take it and do they use a reduced dosage?

Also, of course, my other reason for writing it that I hope that this post might help someone else who is suffering since Lindsay’s gastro never ever mentioned this as an option.

Thank you so much for the help!!

Written by Lynn




Enteragam

2 Responses to Questions about EnteraGam

  1. Debbie November 6, 2017 at 1:54 am #

    Lynn,
    Has Lindsay tried nasal rinses? They can help prevent sinus infections, colds, viruses and allergies. My daughter is on Remicade for UC so she has a compromised immune system. She has not gotten a cold since we started doing nasal rinses almost 2 years ago. We only do the rinse once a week. It is easy to do and takes very little time or money.
    I have not heard of Enteragam.

  2. Alyssa
    Alyssa March 12, 2018 at 9:59 am #

    Hi Lynn,

    I thought I’d share my experience (though a big ambiguous) since I have used EnteraGam. I have also discovered EnteraGam, not through my GI, but through a chiropractor I’ve been seeing who shares alternative and holistic approaches to healing. My insurance company does not cover it, but when I asked my GI about it they were able to give me some sample boxes, and so far I’ve been able to go off of samples without paying the $80 per box they would cost if I got them at the pharmacy. I talked with a nurse who has her own integrative medicine practice (recommended by my chiropractor) first about EnteraGam, and she said that she had a very high success rate using it with people who have IBS or IBD symptoms. However, when I asked my GI what his thoughts were about using it, he said his patients really haven’t had success so he doesn’t suggest it to people.

    For me, I never noticed any negative side effects, but I am also not sure how much it may have been helping me either since by the time I discovered EnteraGam, I was already on my way to (a hard won) remission with prednisone. EnteraGam may have helped keep me stable, but I do not know for sure. I started on 2 packs a day for 2 weeks, went down to one pack a day, and then one every other day. Currently I don’t take it and am doing fine, though I have some around in case I start to have symptoms and want to try it again. I am always a fan of anything that may have a low chance of side effects and that are not hard on the body so definitely wanted to give EnteraGam a try – and dealing with something as challenging as UC, I didn’t want to leave any rock unturned!

    Glad EnteraGam helped your daughter! :)
    Alyssa

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