We really did learn a lot about Ellie's healing progress from the acorn squash 'incident'. Ellie's hurdles for healing that are part of the cause of her FPIES include leaky gut (colitis), bacteria and fungus overgrowth, lack of stomach bile, and missing digestive enzymes that includes dissacharide deficiency. The purpose of GAPS is to do two things: detox and heal. Ellie's extremely limited diet is to help her intestines get nutrients that do not require digestion (the theory behind elemental formula), and rebuild from the inside out.
Intestines are full of villi. When those villi are healthy and nourished (they take a lot of nutrition to maintain) they stand up to touch food, and also participate in the creation of enzymes that break food down to be used. In ANY gut, too much fiber will damage these villi. For Ellie even a fraction of fiber will rip through the villi and scratch up the unprotected colon surface, flaring what we know as colitis, and creating ulcers and lesions. This can also result in blood in the stool. The colon also contains bacteria and fungus strains that are not present in the rest of the body. When this bacteria balance is off, which can occur for a million different reason, it also damages the colon. One of the most popular to discuss is yeast, or candida. Candida is a lovely little fungus that is spiral in appearance, and should it gain access to the intestinal wall it burrows it's little corkscrew-self in and creates holes. All of these holes allow for food that has not been properly broken down to enter the bloodstream where our most amazing blood cells create antigens and attack it because it isn't supposed to be there.
The last 9 months has been a time of 'gut rest' for Ellie. She has been rebuilding her colon wall, getting her bacteria under control, and regrowing her villi. Each time we introduce a new food we are testing that process to see how far along she has gotten. During the first several months of GAPS it did not take much and a new food would send her back to bloody mucousy stools and FPIES-like symptoms. The longer it has taken for her to heal, and the more foods we are unsuccessful with, we earn clues as to how damaged she is and how to help her. The discouragement comes from the fact that sometimes little (and big) bodies are so damaged and overloaded that they never progress past a certain stage. And with every new food she hasn't tolerated, and every new email to Dr. Natasha, she has implied this might be the case and to not fret so much because she could live, eat, and thrive for the rest of her life on a diet of animal based foods.
While I am thrilled she is getting every single nutrient she needs, a diet this limited sounds horrifying to any mother. While I am willing to accept it, I obviously hope for more. What we found with the introduction of acorn squash was HOPE that she was PROGRESSING. You see, Ellie did NOT have poop problems with acorn squash. None! This is what made us do the happy dance and believe it was going to be tolerated. What this means: she is healing her colon wall and her villi are regrowing! THIS IS EXCITING STUFF!
Now for the bad news.
What we saw next was different than any reaction she has had yet. We had stopped the acorn squash because I decided to begin rotating between zucchini and acorn squash. But even though we had stopped the squash, Ellie's poops began to get looser and looser, and more and more problematic. Eventually they looked like FPIES reaction poop with mucous, acid and horrible stink, but this took about a week. This in spite of not eating the food! And to add to the surprise, she developed full body eczema unlike anything we had seen since pre-GAPS. Bumps, blisters, oozing and cracked skin. And her super sensitive skin began reacting to everything again making it worse. At one point her legs from hip to ankle were covered in blistered, split, oozing skin, topped with a round of hives. Her screaming was all night long, and during the days she cried the most pitiful cry. What this means: the acorn squash fed bad bacteria and fungus and her body became overrun almost instantly. It was also a sign that she still was not producing digestive enzymes. (It was intriguing to watch the process from a step-outside-of-the-mommy-watching box. I could literally watch the bacteria and fungus take over her body.)
What did we do? Baking soda baths. Epsom salt baths. Lots of raw coconut oil and shea butter on the skin. I put nystatin back into her bottles and even mixed some of it into the shea butter to slather on her legs. At one point I resorted to a thin layer of steroid cream. That seemed to make the difference for her skin but left me feeling horribly guilty.
And I finally sucked it up and made a plan using information from the WAPF conference, and I finally emailed. Dr. Natasha. I was petrified to, because I was certain she would say once more what she has said the last several times - give up on the vegetables and go back for raw dairy and eggs. Frightening stuff for this FPIES mama! I was so relieved when I got additional insight from her that did not include heading straight for dairy.
So here we go once more. I'm ready to rock and roll. And in the meantime she has been drinking organic mint tea. Not a food perhaps, but she loves it, and we will take it as encouragement and something new!
New plan per Dr. Natasha's email and my mommy observations (more explanation to come):
1. Iodine painting.
2. New stronger probiotic.
3. Appointment with Dr. Natasha recommended GAPS doctor.
4. Introduce coconut oil for eating (instead of just topical).
5. Introduce fermented coconut water.
6. Try a new veggie.
The cycle of frustration always faithfully lands me back on my knees looking for direction, even though on the surface it seems odd to ask in a prayer what I should feed her. I have given that up as of a few months into GAPS, because who made her certainly should know best! So.....rock and roll, baby. Off to now find young coconuts. Here we go again!