Elimination Diets
I have been pretty fortunate when it comes to a FPIES elimination diet. Matthew never really reacted to things through my milk until after he had reacted to them directly. We were actually clueless about FPIES until we started him on solids. After he has a FPIES vomiting episode, exposure to his triggers through my milk cause him to have diarrhea and vomiting, so now I eliminate any food he fails from my diet. Currently that includes rice, peas, venison, and coconut.
I know there are Moms out there who have little ones that react through their milk before they even start solids. I asked an amazing fellow FPIES Mom Niki to allow me to share her elimination diet expertise to help you out, and she graciously agreed. Below is Niki's experience with an elimination diet for her son:
"I picked the foods using a combination of what I suspected he had done well on in my diet (certain foods I ate a lot of) plus foods that had low reactivity (per the FPIES survey) and were nutrient powerhouses. Amanda LeFew suggested an amazing fat source (coconut) and a few other low reactivity foods. I started with a very small number of safe foods and added foods that had nutrients I was missing with each trial. I didn't trial anything for my son until I could afford to lose the food if he failed. I had nine foods when we started his trials (two of which were an oil and agave, so seven real foods). He was 8.5 months when we started solids and he had never had anything besides breast milk until then.
"I never trial food in my diet concurrently with a trial in my son's diet. Overlapping trials ruins the "experiment" and makes it impossible to determine the source of any symptoms. It can be difficult enough to parse out symptoms from teething and sleep disturbances from growth and developmental milestones as is, throwing in the question whose food might be the culprit wastes valuable time (especially when both foods have to be pulled and re-trialed.
"I'm eating 100% grass fed lamb, grain free wild boar (they eat mainly clover and acorns), kale, spinach, golden/red beets and beet greens, yellow potatoes, bananas, blackberries, figs, dates, coconut, flax, canola, and quinoa. I occasionally have agave in coconut shakes. I'm trialing baking soda now.
"I don't eat anything from a can. I only use Ancient Harvest quinoa products because they have a dedicated facility. I use So Delicious coconut milk. We did mini-trials for the Coconut Secret products (in case of cross contamination). I do mini-trials for different varieties Everything else we purchase fresh. I trial everything.
"I eat almost two pounds of greens a day (over half pound raw kale, very nutrient rich). I love leafy greens, so this isn't anything different for me. I don't eat potatoes every day (I don't really care for potatoes anyway). If I don't have potatoes, I have quinoa. I eat lamb every day (I'm not big on meat, so this was a big change). I eat coconut milk, figs, and bananas every day. The boar and blackberries rotate in and our as I feel like them. (neither is necessary for my nutrition).
"Now that my son is trialing food, it's slow going adding food. I haven't trialed anything for me in over a month. The good news is, for us, breastmilk reactions are MUCH less severe. We've also been able to filter out severe triggers without him ever having been exposed to them directly. The bad news, of course, is that I have 14 safe foods."
Niki Galownia
Niki's husband Jonathan also had some excellent points about how this is not all on the Mom's shoulders, that the entire family plays a role in keeping our FPIES babies safe. Here's what Jonathan wanted to share:
"We, like probably every other FPIES family, are SUPER anal about cross contamination. Jeremy has his own cookware, utensils, sponges, etc. I try not to ever eat anything that has his triggers, or is even unknown, when he is near or when we are prepping his food. Major triggers are mostly removed from the house. No wood toys (paint often has soy in it), no papers in reach of J, so on and so forth.
"Niki doesn't wear makeup. J had his first full blown FPIES reaction to makeup. He touched a family friend's face, then put his hand in his mouth and vomited two hours later. The friend checked her foundation's ingredients and soymilk powder was something like 20th on the list. No one visiting is allowed to apply makeup in the house. If they are wearing any, they can't hold J. We've swapped out all of our soaps. we use only lotion we 'trialed' with him. When I come home from work, I immediately change, new undershirt and all to prevent carry in of anything and also because he gets a rash from my dry cleaning..and so on. :)"
Jonathan Galownia
Jonathan brings up such an excellent point. When you are dealing with FPIES, it's not just the Mom who has to sacrifice. Every family member has to be vigilant about cross contamination...Matthew sometimes goes through three forks at a meal because one drops, gets picked up, and accidentally touches something he can't have. And even though I'm the only one who has to eliminate rice from her diet, my husband and daughter have also had to do without rice for months now. We stopped making so many of our favorite meals because they contain rice (beef teriyaki, thai basil chicken, pork & fried rice, chicken & rice...the list goes on and on!). FPIES affects your whole family, so make sure everyone is on board :)
I know there are Moms out there who have little ones that react through their milk before they even start solids. I asked an amazing fellow FPIES Mom Niki to allow me to share her elimination diet expertise to help you out, and she graciously agreed. Below is Niki's experience with an elimination diet for her son:
"I picked the foods using a combination of what I suspected he had done well on in my diet (certain foods I ate a lot of) plus foods that had low reactivity (per the FPIES survey) and were nutrient powerhouses. Amanda LeFew suggested an amazing fat source (coconut) and a few other low reactivity foods. I started with a very small number of safe foods and added foods that had nutrients I was missing with each trial. I didn't trial anything for my son until I could afford to lose the food if he failed. I had nine foods when we started his trials (two of which were an oil and agave, so seven real foods). He was 8.5 months when we started solids and he had never had anything besides breast milk until then.
"I never trial food in my diet concurrently with a trial in my son's diet. Overlapping trials ruins the "experiment" and makes it impossible to determine the source of any symptoms. It can be difficult enough to parse out symptoms from teething and sleep disturbances from growth and developmental milestones as is, throwing in the question whose food might be the culprit wastes valuable time (especially when both foods have to be pulled and re-trialed.
"I'm eating 100% grass fed lamb, grain free wild boar (they eat mainly clover and acorns), kale, spinach, golden/red beets and beet greens, yellow potatoes, bananas, blackberries, figs, dates, coconut, flax, canola, and quinoa. I occasionally have agave in coconut shakes. I'm trialing baking soda now.
"I don't eat anything from a can. I only use Ancient Harvest quinoa products because they have a dedicated facility. I use So Delicious coconut milk. We did mini-trials for the Coconut Secret products (in case of cross contamination). I do mini-trials for different varieties Everything else we purchase fresh. I trial everything.
"I eat almost two pounds of greens a day (over half pound raw kale, very nutrient rich). I love leafy greens, so this isn't anything different for me. I don't eat potatoes every day (I don't really care for potatoes anyway). If I don't have potatoes, I have quinoa. I eat lamb every day (I'm not big on meat, so this was a big change). I eat coconut milk, figs, and bananas every day. The boar and blackberries rotate in and our as I feel like them. (neither is necessary for my nutrition).
"Now that my son is trialing food, it's slow going adding food. I haven't trialed anything for me in over a month. The good news is, for us, breastmilk reactions are MUCH less severe. We've also been able to filter out severe triggers without him ever having been exposed to them directly. The bad news, of course, is that I have 14 safe foods."
Niki Galownia
Niki's husband Jonathan also had some excellent points about how this is not all on the Mom's shoulders, that the entire family plays a role in keeping our FPIES babies safe. Here's what Jonathan wanted to share:
"We, like probably every other FPIES family, are SUPER anal about cross contamination. Jeremy has his own cookware, utensils, sponges, etc. I try not to ever eat anything that has his triggers, or is even unknown, when he is near or when we are prepping his food. Major triggers are mostly removed from the house. No wood toys (paint often has soy in it), no papers in reach of J, so on and so forth.
"Niki doesn't wear makeup. J had his first full blown FPIES reaction to makeup. He touched a family friend's face, then put his hand in his mouth and vomited two hours later. The friend checked her foundation's ingredients and soymilk powder was something like 20th on the list. No one visiting is allowed to apply makeup in the house. If they are wearing any, they can't hold J. We've swapped out all of our soaps. we use only lotion we 'trialed' with him. When I come home from work, I immediately change, new undershirt and all to prevent carry in of anything and also because he gets a rash from my dry cleaning..and so on. :)"
Jonathan Galownia
Jonathan brings up such an excellent point. When you are dealing with FPIES, it's not just the Mom who has to sacrifice. Every family member has to be vigilant about cross contamination...Matthew sometimes goes through three forks at a meal because one drops, gets picked up, and accidentally touches something he can't have. And even though I'm the only one who has to eliminate rice from her diet, my husband and daughter have also had to do without rice for months now. We stopped making so many of our favorite meals because they contain rice (beef teriyaki, thai basil chicken, pork & fried rice, chicken & rice...the list goes on and on!). FPIES affects your whole family, so make sure everyone is on board :)
