On the night of February 10, 2011, I held a dying child in my arms.
Her weight had plummeted, she was dehydrated, and her elemental formula had failed her. I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear.
We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error
We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'
We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her
Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet. Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby. And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'. Her body was tired and worn out from fighting.
We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time. And on the night of February 10, 2011, I was certain she may not make it until morning.
Fear. I could never explain the fear.
I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.
The actual dates are muddy since email dates do not match blog post dates; I certainly was not focused on taking notes. I had already purchased the GAPS book and had skimmed it. My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research. I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask. There are a lot of things I should have done....differently. And a lot of things I did not understand. But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.
It was hard work. And it was petrifying.
Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing. Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.
Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear: You can heal your daughter.
One year ago tomorrow, someone I had never met saved her life.
And I vowed I would not be quiet about it.
GAPS heals autoimmune disease. Period. It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.
Need hope?
Showing posts with label SCD. Show all posts
Showing posts with label SCD. Show all posts
Thursday, February 9, 2012
Monday, May 16, 2011
Bloodwork
One positive thing came out of the $30 co-pay to the GI we won't be keeping, and that is the blood work. We have not had an entire round of blood work done on Ellie for several months, and now that we have completely started GAPS with her, I wanted to see what her vitamin levels looked like.
The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.
The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.
At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.
After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.
This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.
On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.
The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.
The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.
At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.
After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.
This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.
On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.
Wednesday, April 27, 2011
And How Do We Get Them Back?
This has been the research question of the month for me. Those confusing digestive enzymes have pushed me into rethinking my career and considering courses this summer in something that might help. The short answer: heal the intestines from the inside out.
Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:
When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.
Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.
Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.
Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.
So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?
BONE BROTH :)
Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.
Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:
When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.
Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.
Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.
Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.
So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?
BONE BROTH :)
Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.
Tuesday, April 26, 2011
Digestive Enzymes: NOW what do we feed her?
The search for an explanation of digestive enzymes and why they might be missing revealed a list of additional 'disorders' and 'diagnoses' that are labeled as genetic, but with no gene yet found. All of the enzymes can be missing in various capacities, and it is very often a secondary condition to intestinal dysbiosis. Let me say that again - a secondary condition due to intestinal damage and NOT a genetic disorder. Our G.I. brought this to our attention early on. This is what I believe Ellie has, Sugar Intolerance as a secondary condition to FPIES.
Congential Sucrase-Isomaltase Deficiency (CSID) is one dissacharide deficiency diagnosis with it's own parent group website. On this website I found a very helpful list telling sucrose and starch levels in various foods. One quick glance through shed light onto the progression of foods allowed on the GAPS and SCD nutritional programs. The introduction diet (or healing stage) of GAPS allows for only broccoli, cauliflower, carrots, onions, leeks, and squash (winter and summer). All of these vegetables have extremely low levels of any sugars that would need enzymes for digestion. Winter squash and carrots are the highest in starch, and most surprisingly, broccoli and cauliflower have almost zero levels of fructose, sucrose, maltose, lactose or starch. Those green vegetables that the doctors have said for Ellie to avoid due to high levels of protein? Low low LOW on the scale of digestion needs. Good good GOOD choice for us! And right in line with Dr. Natasha. More confirmation we are headed in the right direction.
So the answer, once again, was right in front of me. What do we feed her to continue her healing? GAPS, stage 1. For those of you curious here is a fantastic resource I found by another blogger. She compiled a condensed view of the healing stages of GAPS. Her super cute site has a super great name, too: Health, Home and Happiness. A very important three!
Congential Sucrase-Isomaltase Deficiency (CSID) is one dissacharide deficiency diagnosis with it's own parent group website. On this website I found a very helpful list telling sucrose and starch levels in various foods. One quick glance through shed light onto the progression of foods allowed on the GAPS and SCD nutritional programs. The introduction diet (or healing stage) of GAPS allows for only broccoli, cauliflower, carrots, onions, leeks, and squash (winter and summer). All of these vegetables have extremely low levels of any sugars that would need enzymes for digestion. Winter squash and carrots are the highest in starch, and most surprisingly, broccoli and cauliflower have almost zero levels of fructose, sucrose, maltose, lactose or starch. Those green vegetables that the doctors have said for Ellie to avoid due to high levels of protein? Low low LOW on the scale of digestion needs. Good good GOOD choice for us! And right in line with Dr. Natasha. More confirmation we are headed in the right direction.
So the answer, once again, was right in front of me. What do we feed her to continue her healing? GAPS, stage 1. For those of you curious here is a fantastic resource I found by another blogger. She compiled a condensed view of the healing stages of GAPS. Her super cute site has a super great name, too: Health, Home and Happiness. A very important three!
Wednesday, April 20, 2011
Another Crash Course: Sugar Intolerance 101
After finally getting a copy of Ellie's dissacharide test, I realized I had no idea what I was looking at. The nurse had suggested they were concerning and very low, and with no current treating GI doctor I figured I had better get my fanny moving on what these new terms meant. What her test results showed, and what a quick google search along with consulting a few fellow FPIES mamas revealed:
Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)
Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?
Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:
glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE
OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).
*sigh* Back to the mommy brain to digest what this means (pun intended).
What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.
What I needed to know:
How do we get them back?
How does this affect what I feed her?
With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.
Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)
Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?
Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:
glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE
OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).
*sigh* Back to the mommy brain to digest what this means (pun intended).
What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.
What I needed to know:
How do we get them back?
How does this affect what I feed her?
With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.
Thursday, March 17, 2011
The Method To My Madness
Who is Dr. Natasha Campbell-McBride?
- She is a doctor of neurology
- She is a doctor of nutrition
- She obtained her first degree in Russia
- She obtained her second degree in the UK
- She practices medicine in the UK
- She previously worked as a neurosurgeon
- She is the mom of a child previously diagnosed with Autism
- She has done extensive research on the 'gut/brain connection'
While she has her own field experience and medical work dating back to the early 80's, she also works with other doctors all over the globe and does an excellent job of compiling research. This includes the Specific Carbohydrate Diet. (You may find a bunch of websites dedicated to which is 'better', GAPS or SCD, but the truth is they fall in the same group.)
Her original focus was to heal her son, and investigate the autism spectrum. What resulted was a compilation of information connecting intestinal health to overall health and nutrition. She promotes underlying health and healing protocols based on medical research and experience, combined with the ability to recognize individual gut and immune system conditions.
To me, she was the unheard of - medicine combined with nutrition.
Now I do not wear rose colored glasses. I am not/was not hoping for a miracle fix. And I did not randomly pick a doctor off of the internet. I had done my research, which included speaking to other GAPS homes and patients over the course of two years. But seriously, ....SERIOUSLY. What did we have to lose?
So I emailed her, doubting I would ever get a response. Yet to my surprise, I received a personalized response to Ellie's condition within 24 hours.
And what I received was hope. HOPE. Let me say it again:
HOPE
And the best sentence in her email?
"...children at her age recover quite quickly once you start feeding them properly."
So you see, there IS a method to my going out on a limb and choosing a path other than what Ellie's doctors can give. And this method does not come from the quack witch doctor on the corner. It comes from a brilliant, experienced, doctor of neurology and nutrition, who has made it her goal to help other mothers around the globe. Not with a magic pill. Not with a prescribed medicine. But with a challenge to examine the environment in my home, the food on my table, and the toxic load that Ellie has inherited from me. Overwhelming? Yes. But finally a place to start.
- She is a doctor of neurology
- She is a doctor of nutrition
- She obtained her first degree in Russia
- She obtained her second degree in the UK
- She practices medicine in the UK
- She previously worked as a neurosurgeon
- She is the mom of a child previously diagnosed with Autism
- She has done extensive research on the 'gut/brain connection'
While she has her own field experience and medical work dating back to the early 80's, she also works with other doctors all over the globe and does an excellent job of compiling research. This includes the Specific Carbohydrate Diet. (You may find a bunch of websites dedicated to which is 'better', GAPS or SCD, but the truth is they fall in the same group.)
Her original focus was to heal her son, and investigate the autism spectrum. What resulted was a compilation of information connecting intestinal health to overall health and nutrition. She promotes underlying health and healing protocols based on medical research and experience, combined with the ability to recognize individual gut and immune system conditions.
To me, she was the unheard of - medicine combined with nutrition.
Now I do not wear rose colored glasses. I am not/was not hoping for a miracle fix. And I did not randomly pick a doctor off of the internet. I had done my research, which included speaking to other GAPS homes and patients over the course of two years. But seriously, ....SERIOUSLY. What did we have to lose?
So I emailed her, doubting I would ever get a response. Yet to my surprise, I received a personalized response to Ellie's condition within 24 hours.
And what I received was hope. HOPE. Let me say it again:
HOPE
And the best sentence in her email?
"...children at her age recover quite quickly once you start feeding them properly."
So you see, there IS a method to my going out on a limb and choosing a path other than what Ellie's doctors can give. And this method does not come from the quack witch doctor on the corner. It comes from a brilliant, experienced, doctor of neurology and nutrition, who has made it her goal to help other mothers around the globe. Not with a magic pill. Not with a prescribed medicine. But with a challenge to examine the environment in my home, the food on my table, and the toxic load that Ellie has inherited from me. Overwhelming? Yes. But finally a place to start.
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