When Ellie was still an infant and I first asked the pediatrician about probiotics he said 'Sure! Let's give it a shot! Anything to help keep you breastfeeding.' But I didn't. When I asked the GI he said 'well, it certainly won't hurt. But there are no studies showing that it is beneficial.' And I had a lot of other things I was processing, so again I didn't. When I began investigating GAPS and SCD as an alternative treatment for Ellie, everything said get her on a probiotic right away. But I didn't do it. When I contacted Dr. Natasha she was adamant that I needed to start one right away. And again, I didn't.
Why not? What was my hesitation? Part of the problem was I did not have the time to do the research. I was impressed with the need of getting her food and off of the formula, and that (along with life) pushed the probiotic investigation farther down the list.
What I now know about probiotics:
-There are more than 500 types of bacteria living in the human GI track.
-Most of them live in the colon (lower intestines), and they are not supposed to be living in the stomach.
-Only 500 or so of these bacteria have been discovered and named. Many of them can not live outside of the body so there is no way to test for all of them accurately.
-The most common ones found in the probiotic aisle of the supermarket are not enough to do any good and a waste of your money.
-Probiotics are bacteria, and must be cultured on something. This can be anything from soil to vegetables to meat to human. Sensitive systems CAN react to these 'root' cultures.
-Probiotics often come with 'fillers' that are not necessary and can make them less beneficial. Some even have sugar added!
-Taking a probiotic in a capsule is less effective than taking a powder because your already compromised body must digest the capsule first.
-Even 'good' bacteria can over grow and cause problems in a GI system. In fact, any of the bacterias can over grow, not just 'candida', which is the most discussed.
-Bacteria over growth can spread to the mouth, ears, throat, sinuses, and cause additional problems such as distorted taste, sensory issues, ear infections, and mucous.
-Probiotics can also be taken in the form of fermented vegetables, such as properly prepared sauerkraut.
The majority of people can benefit from taking a good probiotic blend, simply due to the environment we live in and the food we ingest. So what is the problem? Why the hesitation with Ellie? This is two fold.
Problem 1: What is the probiotic cultured on? While it was easy to read the labels and see if a particular probiotic included fillers, it took much more time to contact manufacturers to find out what their product was actually cultured on. While only one company refused to disclose that information to me (it's proprietary), the rest were very helpful when I explained Ellie's condition and why I was asking.
Problem 2: Should she have a probiotic blend or a single strain? Dr. Natasha (GAPS) promotes that it is extremely impractical and expensive to find a lab that tests for as many bacteria levels as possible in the intestines, and that the tests are unreliable and limited. The best course of action is to take a quality probiotic with as many strains as possible to help aid with healing. At the same time as I began investigating this, other FPIES mamas began the trek to visit the very knowledgeable doc in New Jersey. I waited to hear what they learned, and many of them were prescribed single strain or very specific probiotics, with instruction that too many or too much would be too hard on the little FPIES bodies. These were two conflicting perspectives.
I hemmed. I hawed. I researched and I read. And I think I blew it. I suppose in the back of my mind I wished that Ellie would have progressed and done fine without having to battle a probiotic, and so we moved forward with vegetables. First zucchini, then onion, and then an epic fail for carrots. Her reaction to carrots was so damaging to her system that we have had to go back to bone broth only in order to help and allow her to heal from it. As a result we are stuck.
Ellie cannot move forward without a probiotic. She may need some additional supplements as well, but my desire to protect her and adapt GAPS to her specifically has caused me to delay. Have we lost time? Perhaps. But if I am to trust this world renowned doctor who has responded to me directly, how am I to contact her at this point for more help only to say 'well, yeah, that basic thing of adding a probiotic? I didnt do it.' Now I am convinced Ellie needs it - that she must have it. I have some regrets and mommy guilt for waiting, but at least now I move forward knowing it is the right thing and what she needs.
There is one strand of intestinal bacteria that is particularly hard for some people to tolerate (streptococcus thermophilus), and so I have picked a probiotic that is free of it (GUTPro). Until it arrives we are giving her some extremely small doses of the 'proprietary probiotic' because it is free of fillers and has a great reputation. She is already showing signs of die off on day two, so this part could be a long battle. Perhaps that was what my mommy-side was trying to avoid this whole time. We will see how it goes!