For those unfamiliar with Dr. Natasha Campbell-McBride, here is a brief excerpt from her book that I believe should be marked as 'for the protein intolerance diagnosed in the United States'.
"People with food allergies and intolerances should go through the Intro Diet in order to heal and seal their gut lining. The reason for allergies and food intolerances is a so-called 'leaky gut' when the gut lining is damaged by abnormal micro flora. Foods do not get the chance to be digested properly before they get absorbed through this damaged wall and cause the immune system to react to them. Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause an immediate reaction or a delayed reaction (a day, a few days, or even a couple of weeks later). As these reactions overlap with each other, you can never be sure what exactly you are reacting to on any given day. Testing for food allergies is notoriously unreliable: if they had enough resources to test twice a day for two weeks, they would find that they are "allergic" to everything they eat. As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever, removing different foods and never getting anywhere. From my clinical experience, it is best to concentrate on healing the gut wall with the Introduction Diet. Once the gut wall is healed, the foods will be digested properly before being absorbed, which will remove many food intolerances and allergies."
Reference: here
Dr. Campbell-McBride has been in practice with this philosophy of medicine since 1998.
At Ellie's last GI appointment, our fantastic and up-to-date doctor (he really is wonderful) told us there was some 'new' information coming out that speculated that a leaky gut caused additional proteins in to the body that caused reactions such as those of FPIES.
Tuesday, February 8, 2011
The Hand of God (a pause to give credit where credit is due)
That afternoon I was able to research and process what the yellow poop meant. There are three things that can cause it: bacteria infection, lack of stomach bile, or GERD (reflux). Elianna has already been tested for bacterial infections, obviously has GERD, and the lack of stomach bile hit a chord. Where had I read that? Leaky gut and lack of stomach bile...?
I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.
Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.
Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.
Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.
That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.
I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.
Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.
Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.
Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.
That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.
TGIF
Friday I packed up the kiddos so we could attempt to make it to our local home school co-op. I had no idea how I was going to make sure Elianna actually ate while we were there, and my nerves were a wreck, but there was no way I could disappoint my five year old with something else she would miss out on due to her sick sister. I just prayed that the other moms (and dads) would be understanding of my foggy glazed expressions and difficulty socializing like a normal human being. After all, they have appeared understanding thus far. So out the door we went.
After the first hour, Elianna gladly took her bottle of almond milk and drank it lukewarm, actually, mostly cold! Now this was a first for her - EVER. She has always been very particular about the temperature of her bottle, and I believe it is because of her reflux and pain. The warm soothes and makes it easier to swallow. I happily accepted this cold bottle as a sign that she was feeling better. Hooray!
The most exciting event occurred during hour two - a diaper full of yellow poop! In the FPIES world, we are great poop analyzers. Color, smell, texture, consistency, time of day, amount, ...you name it. We FPIES mommies could write stellar science reports on the poop in those FPIES diapers. What is typical is a green, acidic, butt burning, rash causing, sometimes blistering, extreme diarrhea or extreme constipation. The smell is a give away from the next room. Elianna has had this in her diapers since birth. THIS was the first yellow poo I had probably seen since we had left the hospital when she was born. THIS was remarkable. THIS did not burn and was only uncomfortable, and THIS was proof that she was not reacting to the almond milk! Two solid answers in one morning, and I was ecstatic.
THIS was a great day that started out with some fantastic answers. Thank you God. THANK YOU for answers.
After the first hour, Elianna gladly took her bottle of almond milk and drank it lukewarm, actually, mostly cold! Now this was a first for her - EVER. She has always been very particular about the temperature of her bottle, and I believe it is because of her reflux and pain. The warm soothes and makes it easier to swallow. I happily accepted this cold bottle as a sign that she was feeling better. Hooray!
The most exciting event occurred during hour two - a diaper full of yellow poop! In the FPIES world, we are great poop analyzers. Color, smell, texture, consistency, time of day, amount, ...you name it. We FPIES mommies could write stellar science reports on the poop in those FPIES diapers. What is typical is a green, acidic, butt burning, rash causing, sometimes blistering, extreme diarrhea or extreme constipation. The smell is a give away from the next room. Elianna has had this in her diapers since birth. THIS was the first yellow poo I had probably seen since we had left the hospital when she was born. THIS was remarkable. THIS did not burn and was only uncomfortable, and THIS was proof that she was not reacting to the almond milk! Two solid answers in one morning, and I was ecstatic.
THIS was a great day that started out with some fantastic answers. Thank you God. THANK YOU for answers.
Moving Past Hemp (for now)
The next day I added 1/4 teaspoon Hemp protein powder to Elianna's formula, but when she finished the bottle there was a lot left. The second bottle confirmed that the powder was staying stuck in the neck of the bottle nipple and she was not ingesting it. Bummer. That was a wasted day.
She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.
I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.
I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.
That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.
She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.
I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.
I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.
That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.
Sunday, February 6, 2011
Fearful Mommy: part 2
We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
Fearful Mommy: part 1
Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Things We Are Looking For
This is a list of the items we are currently in need of in our home to cook for Ellie. Information on sales, ads, or give-aways would be greatly appreciated!
- large stock pot with lid
- soy and corn free meat information: almost anything at this point! emu anyone? yak?
- large lidded bucket for making and storing laundry soap (empty kitty litter bucket?)
- large food processor
- yogurt maker
- large stock pot with lid
- soy and corn free meat information: almost anything at this point! emu anyone? yak?
- large lidded bucket for making and storing laundry soap (empty kitty litter bucket?)
- large food processor
- yogurt maker
Subscribe to:
Posts (Atom)