As we have transitioned Ellie onto the GAPS introduction diet (designed for healing), we have begun to use the phrase 'die off' more and more frequently. It has taken us quite some time to figure out what 'die off' is, and how it specifically applies to Ellie. I have listened to other moms talk about it, researched it, and checked various GAPS support groups for more information. What is die off? How do you know if what you are seeing is die off or a reaction? When do you know if it is too much die off? Can things other than a probiotics cause die off? The questions kept coming, both in our house and in my conversations with other moms of protein intolerant kiddos. I certainly do not have the answers, and am far from being a doctor, but here are some tips on what I have discovered.
Die-off is a positive phrase used to describe negative symptoms that can happen when introducing a probiotic, or probiotic food. In my limited experience, it does not seem to be a medical expression used or understood in the traditional western MD office, but then again, probiotics are not usually discussed there either. The reason? My favorite GI said that there are not adequate studies showing that they make a difference. I found this peculiar so I checked the references used by Dr. Campbell-McBride when writing an entire chapter on the medicinal use of probiotics. In the index of my GAPS book I found FOURTY-FOUR (44) accepted medical references. Way to go Western Medicine (insert sarcasm here).
So, the question remains, what is die off? The body is a host to millions of bacteria. They need to live happily together in a harmonious balance for us to be at our peak of health. Unfortunately there is an unmeasurable list of things that will get them all out of wack. The most common ones discussed are antibiotics, illness, and refined sugar. All of these things and many more cause an imbalance, and symptoms ranging from allergies to eczema to asthma to who-knows-what can erupt. When you disrupt these out of balance bacteria they die, hence the 'die off' effect. The death of the overgrown buggers release extra toxins into the body systems. The 'die off' is usually seen as increase in problematic symptoms. Most common is eczema or rash. But it can be an increase in ANY of the symptoms that your body is suffering from as a result of this unhealthy condition. Unfortunately this is unique to every single individual, so while some are common, there is no way to say exactly what it will be.
Ellie's die off has ranged from mild to severe flares with her eczema, to reflux, to acidic poop, to a more bloated belly than normal. These symptoms have all mimicked an FPIES reaction/fail at some point and have been very confusing to push through. The more bizarre symptoms have included a change in tongue color, itchy nose, emitting a sweet smell, and regression in speaking. Her symptoms were worse when we first began the diet of broth, and also at the introduction of her probiotic. With each slight increase in the probiotic dose her die off flares for a couple of days and then goes away.
I fully expected her worst die off to be seen with the introduction of a purchased, in the bottle multiple strain probiotic. I was wrong. When we were finally able to begin giving her fermented cabbage juice (like the juice from sauerkraut made of only cabbage) her die off was the worst yet. We started with only 1/8 of a teaspoon of juice in one bottle per day, and stayed there for a couple weeks. It was hard on her. We then finally increased the dose to 1/4 teaspoon in one bottle per day, and her eczema went berserk. She was waking at night crying and scratching. She never did this while even on formula (corn). Dr. Campbell-McBride responded that this was her body ridding itself of toxins. Holy cow! How many toxins could her little body possibly be hanging on to? After about a week of her nighttime episodes I reduced the fermented cabbage juice back down to only 1/8 teaspoon. In a few weeks we will try increasing the dosage again. I now understand why the fermented vegetables are such an important part of her diet. One more win for natural foods.
For those of you who have made it this far and are actually looking for information on die off, I will include this last note: die off can occur from food. There is a short list of probiotic foods that can cause die off, specifically in those with severe gut dysbiosis. Let's take the bone broth, for example. I did not recognize some of Ellie's symptoms as die off when we first started her on the bone broth and meat. (cut me some slack, there was a lot going on!) But now looking back I see them clearly. How does that work? The bacteria in the intestine (and body if it has spread) has to eat. It LOVES to eat those yummy carbs that you ingest through sugars, starches, grains, etc. When you restrict your diet to that which requires very little or no digestion, the food passes right on by, starving those nutrition robbing bacteria....which then die. The final result = die off.
Ta Da! Die off: the mystery behind the words is not much of a mystery after all. It is simply bacteria...dying off.