Tuesday, October 9, 2012
(What the heck is) Glucoamylase Deficiency: Where we are now
We're coming up on 3 years since the diagnosis. At times, it was a pretty rough road. But here we are. A bit bedraggled, perhaps, but a world away from where we were.
Wednesday, August 29, 2012
Nope!
Hi everyone!
I bet you thought I forgot about you, huh? Nope! I have just been craaaazzyy busy. Why, you ask?
But now, we're moved, settled, it's cooler, and we're predictably in one house most of the time. So now I can start experimenting again. I have a Cherry Cobbler in mind for my first new recipe, so stick around and you'll see it soon!
I bet you thought I forgot about you, huh? Nope! I have just been craaaazzyy busy. Why, you ask?
- The Hubby transferred to another state in March.
- I finished the semester in May, and spent the summer writing- and battling over- my thesis.
- I moved to another state in July.
- Our stuff moved to another state in August. (Finally! We are all together again!)
- We went to another state for a wedding in August. Actually, we were in one state or another all-the-freaking-time all summer.
- It was 115°. I was NOT going to cook if I didn't have to.
But now, we're moved, settled, it's cooler, and we're predictably in one house most of the time. So now I can start experimenting again. I have a Cherry Cobbler in mind for my first new recipe, so stick around and you'll see it soon!
Sunday, July 1, 2012
(What the heck is) Glucoamylase Deficiency: What does it all mean?
I've addressed the "what does this mean" in a different post, but I thought it was time to expand it.
I've often joked that my kiddo couldn't have been born to a more perfect family: I have a strong medical background, and it didn't take long before I was the one doing the educating during doctor's visits. However, the whole first year was incredibly intimidating, and much of that was all the new terminology that we all had to absorb. So here's some of those terms, and what this whole deficiency is (and the why and the how) translated into Regular English.
Glucoamylase Deficiency, Pancreatic Glucoamylase Deficiency
Both of those terms effectively mean the same thing. To really understand what it is, you need to understand some really basic anatomy. Everyone has a pancreas. It hangs out with the rest of the parts that my children affectionately call our Guts. Its BFF is the liver. They are so close, in fact, that they are practically attached to each other.
Anyway, the pancreas' main goal in life is to make dry heaves the most horrible-part of the influenza experience. See, that's when we all realize that there is this totally nasty stuff called Bile in our Guts. Terrible, terrible stuff when one has the flu. Crucial stuff if we ever want to eat food. Bile is just a whole bunch of different enzymes. The pancreas makes it, and sends it on down to hang out in the gall bladder until it's needed.
What are enzymes?
Well, when you were a kid did you ever lick a lollypop or eat half a carton of yogurt and then try to "save" it? When you came back it was all slimy and gross... and that's all thanks to enzymes. There are enzymes in our saliva too... in fact, one of them is amylase. Think of amylase as the Bruce Wayne to glucoamylase's Batman. They are very nearly the same, but just a little bit different.
Getting back to the pancreas- its job is to make all these different enzymes. It makes each enzyme separately, and then combines them all together into something that every overindulgent newly 21-year-old is far too familiar with: yep that's Bile. The pancreas, as we recall from 4th grade science, is made of Cells. Each cell has a different job, but many of them are tasked with making enzymes, and each enzyme-making cell only specializes in one particular enzyme. Of course, there are lots and lots of cells that are tasked with the same enzyme, so that there is enough. In order to do that, that cell needs to have the materials, and also have the instructions.
No one is completely sure, but we think that in Glucoamylase Deficiency there was a disastrous incident at the local Kinkos during the dna/baby making process, and the instructions that tell each cell how to make Glucoamylase were, for lack of a better term, all f'ed up. Some cells still muddle through, and sometimes they can mange to make a little glucoamylase. Sometimes there are a few renegade cells make a pretty wonky version of glucoamylase (which, in its wonky-ness, it totally useless) but most of the cells see the f'ed up instructions and say "to hell with it, I'm going to lunch".
The end result is that there either aren't enough cells making glucoamylase, or they just make it v-e-r-y s-lo-w-l-y. Either way, there isn't enough.
Why does this matter?
Well, there are two reasons. First, our bodies are cool and all, but most of our cells (especially our brains) are damn picky. They can only use glucose.
Glucose can come from a couple of places. One is, well, glucose. Found in your handy-dandy piece of fruit or candy necklace, you find it anywhere your sweet tooth is happy. All by itself, it's called a mono-saccharide (one-sugar). However, just like that weird gnome that is always on vacation somewhere, most of the time glucose doesn't like to roam the food pyramid alone. Sometime it'll hook up with fructose and boom! Common table sugar, or "sucrose". Sometimes it will just find another glucose buddy to bond with and boom! One of our nemesis... maltose. All of those are di-saccachrides (two-sugars). But sometimes it won't just hook up with one friend, but they'll have a block party and form a crazy conga line down the street. Then you've got a poly-saccharide (many-sugar), also known as our other dietary nemesis...starch.
Those enzymes that we talked about earlier? They kinda work like the little pull-tab thingy on a zipper to break apart the sugar molecules until glucose is all alone and yummy yummy cell-food. The cells can't use it if it's all hooked up and having a good old time with its buddies. Just like cheap beer is the fuel for every college party, glucose- and glucose that is all alone and not hooked up with anything else- is the only fuel for the little party that the cells like to call the Krebs Cycle.
So anyway. Because the enzyme-making cells are all f'ed up or out to lunch, all the starch or maltose just hangs out in the tummy irritating the intestines (making it harder for all the other good stuff to be absorbed), and is generally useless. Except to the bacteria that we all have in our Guts, of course. It like a bacteria buffet, and they chomp it up as fast as they can replicate. And when they're done? Gas. And bloating. And on and on... we all know the symptoms of Starchy Tummy are pretty miserable.
And this, in a nutshell, is what (and how and why) there is this thing called Pancreatic Glucoamylase Deficiency. Or Maltase-Glucoamylase Deficiency. Or, as we like to say because mono-syllabic words are way easier (yay Regular English!)... Sharky's "Starch Problem".
I've often joked that my kiddo couldn't have been born to a more perfect family: I have a strong medical background, and it didn't take long before I was the one doing the educating during doctor's visits. However, the whole first year was incredibly intimidating, and much of that was all the new terminology that we all had to absorb. So here's some of those terms, and what this whole deficiency is (and the why and the how) translated into Regular English.
Glucoamylase Deficiency, Pancreatic Glucoamylase Deficiency
Both of those terms effectively mean the same thing. To really understand what it is, you need to understand some really basic anatomy. Everyone has a pancreas. It hangs out with the rest of the parts that my children affectionately call our Guts. Its BFF is the liver. They are so close, in fact, that they are practically attached to each other.
Anyway, the pancreas' main goal in life is to make dry heaves the most horrible-part of the influenza experience. See, that's when we all realize that there is this totally nasty stuff called Bile in our Guts. Terrible, terrible stuff when one has the flu. Crucial stuff if we ever want to eat food. Bile is just a whole bunch of different enzymes. The pancreas makes it, and sends it on down to hang out in the gall bladder until it's needed.
What are enzymes?
Well, when you were a kid did you ever lick a lollypop or eat half a carton of yogurt and then try to "save" it? When you came back it was all slimy and gross... and that's all thanks to enzymes. There are enzymes in our saliva too... in fact, one of them is amylase. Think of amylase as the Bruce Wayne to glucoamylase's Batman. They are very nearly the same, but just a little bit different.
Getting back to the pancreas- its job is to make all these different enzymes. It makes each enzyme separately, and then combines them all together into something that every overindulgent newly 21-year-old is far too familiar with: yep that's Bile. The pancreas, as we recall from 4th grade science, is made of Cells. Each cell has a different job, but many of them are tasked with making enzymes, and each enzyme-making cell only specializes in one particular enzyme. Of course, there are lots and lots of cells that are tasked with the same enzyme, so that there is enough. In order to do that, that cell needs to have the materials, and also have the instructions.
No one is completely sure, but we think that in Glucoamylase Deficiency there was a disastrous incident at the local Kinkos during the dna/baby making process, and the instructions that tell each cell how to make Glucoamylase were, for lack of a better term, all f'ed up. Some cells still muddle through, and sometimes they can mange to make a little glucoamylase. Sometimes there are a few renegade cells make a pretty wonky version of glucoamylase (which, in its wonky-ness, it totally useless) but most of the cells see the f'ed up instructions and say "to hell with it, I'm going to lunch".
The end result is that there either aren't enough cells making glucoamylase, or they just make it v-e-r-y s-lo-w-l-y. Either way, there isn't enough.
Why does this matter?
Well, there are two reasons. First, our bodies are cool and all, but most of our cells (especially our brains) are damn picky. They can only use glucose.
Glucose can come from a couple of places. One is, well, glucose. Found in your handy-dandy piece of fruit or candy necklace, you find it anywhere your sweet tooth is happy. All by itself, it's called a mono-saccharide (one-sugar). However, just like that weird gnome that is always on vacation somewhere, most of the time glucose doesn't like to roam the food pyramid alone. Sometime it'll hook up with fructose and boom! Common table sugar, or "sucrose". Sometimes it will just find another glucose buddy to bond with and boom! One of our nemesis... maltose. All of those are di-saccachrides (two-sugars). But sometimes it won't just hook up with one friend, but they'll have a block party and form a crazy conga line down the street. Then you've got a poly-saccharide (many-sugar), also known as our other dietary nemesis...starch.
Those enzymes that we talked about earlier? They kinda work like the little pull-tab thingy on a zipper to break apart the sugar molecules until glucose is all alone and yummy yummy cell-food. The cells can't use it if it's all hooked up and having a good old time with its buddies. Just like cheap beer is the fuel for every college party, glucose- and glucose that is all alone and not hooked up with anything else- is the only fuel for the little party that the cells like to call the Krebs Cycle.
So anyway. Because the enzyme-making cells are all f'ed up or out to lunch, all the starch or maltose just hangs out in the tummy irritating the intestines (making it harder for all the other good stuff to be absorbed), and is generally useless. Except to the bacteria that we all have in our Guts, of course. It like a bacteria buffet, and they chomp it up as fast as they can replicate. And when they're done? Gas. And bloating. And on and on... we all know the symptoms of Starchy Tummy are pretty miserable.
And this, in a nutshell, is what (and how and why) there is this thing called Pancreatic Glucoamylase Deficiency. Or Maltase-Glucoamylase Deficiency. Or, as we like to say because mono-syllabic words are way easier (yay Regular English!)... Sharky's "Starch Problem".
Friday, June 22, 2012
When you're almost out of almond flour...
In this house, it is a BAD thing.
But, when almost out of almond flour, have hope. And scones. Or something.
RaisinScones Pancakes PanScones
(I say they're scones, the children say they're pancakes that don't need syrup)
Ingredients
1 cup raisins
3 apples, cored (I use granny smith)
6 eggs
1/2 c sugar
1 T cinnamon
1 t baking soda
1/3 c brown rice flour
1/2 cup butter
Method
Preheat oven to 325°. Line a pan with parchment paper.
Put all the ingredients in a food processor. Whirl it for AT LEAST 5 minutes, or until everything is completely pureed. Dollop about 1/3 cup batter onto prepared pan, bake in preheated oven for 15-20 minutes or until done. Let cool on the pan, or quickly invert the pan onto a cooling ran. Either way, they are too soft to remove with a spatula while they are warm.
Makes about 20 PanScones
17 gms carbohydrate per scone, 3 gms starch per scone
But, when almost out of almond flour, have hope. And scones. Or something.
Raisin
(I say they're scones, the children say they're pancakes that don't need syrup)
Ingredients
1 cup raisins
3 apples, cored (I use granny smith)
6 eggs
1/2 c sugar
1 T cinnamon
1 t baking soda
1/3 c brown rice flour
1/2 cup butter
Method
Preheat oven to 325°. Line a pan with parchment paper.
Put all the ingredients in a food processor. Whirl it for AT LEAST 5 minutes, or until everything is completely pureed. Dollop about 1/3 cup batter onto prepared pan, bake in preheated oven for 15-20 minutes or until done. Let cool on the pan, or quickly invert the pan onto a cooling ran. Either way, they are too soft to remove with a spatula while they are warm.
Makes about 20 PanScones
17 gms carbohydrate per scone, 3 gms starch per scone
Thursday, May 31, 2012
Also Awesome
So perhaps you've seen my Slightly Addictive Black Cherry Cranberry Popsicles.
These are Also Awesome.
Orangey Orange Popsicles
Ingredients
2 small boxes sugar-free orange jello
1 packet unflavored orange koolaid
2 cups very hot water
2 cups cold water
canned mandarin oranges, drained (about 1 can)
Combine the orange jello, koolaid, and hot water. Stir until the koolaid is completely dissolved. Stir in the cold water.
Add about 3 mandarin orange slices to each popsicle mold. Pour in the jello/koolaid mixture. Freeze.
Makes about 15 popsicles, with 0 gms starch or maltose, and about 2 gms carbohydrate per popsicle.
These are Also Awesome.
Orangey Orange Popsicles
Ingredients
2 small boxes sugar-free orange jello
1 packet unflavored orange koolaid
2 cups very hot water
2 cups cold water
canned mandarin oranges, drained (about 1 can)
Combine the orange jello, koolaid, and hot water. Stir until the koolaid is completely dissolved. Stir in the cold water.
Add about 3 mandarin orange slices to each popsicle mold. Pour in the jello/koolaid mixture. Freeze.
Makes about 15 popsicles, with 0 gms starch or maltose, and about 2 gms carbohydrate per popsicle.
Wednesday, May 30, 2012
Just slightly addictive
So I've been on a bit of a popsicle kick lately. I've made Strawberry-Orange-Banana, Strawberry-Limeade, Triple Berry, Orangey Orange, and a few others. They've all been good, and the Orangey Orange was Really Good, but none have been OMG Good.
well, until now.
But wait, you say... isn't this a strach free blog? Unless they secretly add potatoes to my Flav-Or-Ice, isn't it all starch free??
Yes, but unfortunately many of the commercial popsicles have artificial-everything, and they often have maltose are part of their sweetener blends. So I've been making popsicles for a couple of years to avoid the maltose.
As an added twist, one of my other sons was diagnosed with type-1 diabetes about a month ago (as of this writing) and now either my popsicles need to be sugar free too*, or I need to start making special popsicles for every kid.
I chose option #1. I'm all about the Easy, lol.
So, without further ado, here is the recipe. I recommend just going to your local big box store and buying all the ingredients in bulk. You'll be making them all the time!
Black Cherry Cranberry PopsiclesIngredients
2 packets unflavored gelatin**
1/3 cup sugar-free syrup (I use Torani)**
splenda or other sugar-free sweetener, to taste
2 cups hot water
2 cups cold water
1/4 cup cranberry concentrate, not juice (like This)
Method
Combine the gelatin, syrup, cranberry concentrate and 2 cups hot water. Stir until the gelatin has dissolved, and add sweeteners as desired. Add remaining 2 cups water, and stir well. Pour into popsicle molds and freeze.
**You can substitute 2 small boxes of sugar-free black cherry jello for the syrup and the gelatin. The results will be slightly different, and less tart-sweet but still pretty tasty.
**You can also use 2 packets unflavored gelatin, 1 packet black cherry koolaid, and the sugar-free sweetener equilavent of aboout 1/2 cup sugar (more or less, to taste). This would be a slightly more complicated, but (IMO) much tastier option than sugar-free jello.
Makes about 15 popsicles, depending on size of molds. 0 gms starch or maltose, about 3 gms carbohydrate per popsicle.
*this is why you'll start to see carb counts in addition to starch and/or maltose at the bottom of every recipe. I refer to this blog for recipes all the time, and I only want to calculate it once!
well, until now.
But wait, you say... isn't this a strach free blog? Unless they secretly add potatoes to my Flav-Or-Ice, isn't it all starch free??
Yes, but unfortunately many of the commercial popsicles have artificial-everything, and they often have maltose are part of their sweetener blends. So I've been making popsicles for a couple of years to avoid the maltose.
As an added twist, one of my other sons was diagnosed with type-1 diabetes about a month ago (as of this writing) and now either my popsicles need to be sugar free too*, or I need to start making special popsicles for every kid.
I chose option #1. I'm all about the Easy, lol.
So, without further ado, here is the recipe. I recommend just going to your local big box store and buying all the ingredients in bulk. You'll be making them all the time!
Black Cherry Cranberry PopsiclesIngredients
2 packets unflavored gelatin**
1/3 cup sugar-free syrup (I use Torani)**
splenda or other sugar-free sweetener, to taste
2 cups hot water
2 cups cold water
1/4 cup cranberry concentrate, not juice (like This)
Method
Combine the gelatin, syrup, cranberry concentrate and 2 cups hot water. Stir until the gelatin has dissolved, and add sweeteners as desired. Add remaining 2 cups water, and stir well. Pour into popsicle molds and freeze.
**You can substitute 2 small boxes of sugar-free black cherry jello for the syrup and the gelatin. The results will be slightly different, and less tart-sweet but still pretty tasty.
**You can also use 2 packets unflavored gelatin, 1 packet black cherry koolaid, and the sugar-free sweetener equilavent of aboout 1/2 cup sugar (more or less, to taste). This would be a slightly more complicated, but (IMO) much tastier option than sugar-free jello.
Makes about 15 popsicles, depending on size of molds. 0 gms starch or maltose, about 3 gms carbohydrate per popsicle.
*this is why you'll start to see carb counts in addition to starch and/or maltose at the bottom of every recipe. I refer to this blog for recipes all the time, and I only want to calculate it once!
Thursday, May 24, 2012
(What the heck is) Glucoamylase Deficiency: Our diagnostic Process
As a recap:
We had a very difficult time finding a pediatrician that would actually listen to us. Finally, I found the fantastic pediatrician, who is still my children's primary doctor today.
At first, as it routine, she recommended all the routine treatments and all the routine tests. Increase the whole grains. X-Ray to see if he's constipated. Metamucil. Miralax. More Miralax. But unlike our previous pediatricians, she was able to see through all the noise of his symptoms and his history. She was able to see that I wasn't one of THOSE mothers. (It probably helped that I had two other perfectly healthy children.) And one spring day, after an incredibly difficult week and almost at the end of my rope, I made an appointment. As luck would have it, it was the last appointment of the day.
I went in, ready to demand a referral, and frustrated enough that I was almost on the verge of tears. She sat us down and listened to us, really LISTENED to us. And that moment was when everything started to turn around.
She agreed that we needed a referral. But she also wanted to speed the process along. So she ordered all the regular tests, and quite a few that she thought were likely to be needed, so that when we arrived at the pediatric gastroenterologist we'd be ready to talk about what was, and what wasn't, going on. On that day, she spent over 45 minutes with us. By the time we were leaving, everyone else was gone, including the office staff, and it was well after regular closing hours. But we had made a plan, and for the first time I left a doctor's office with hope that we could find a way to make my child feel better.
During the diagnostic process, especially in the fall of 2009 and the early spring of 2010, life was incredibly busy and my memory is a bit fuzzy. In order to refresh my memory, I have referred to his medical records. If we discussed something that wasn't noted in his record, such as why a particular test was chosen over another, I can only speculate.
The tests that our pediatrician ordered were pretty common: tests for parasites, tests for reducing substances in the stool. Occult blood, pH, WBC, and other analysis (fats that shouldn't be there, etc). He also had some blood work- CBC, CMP, TSH, free T4.
When we saw our pediatric gastroenterologist, she did a scope (upper and lower) and did some biopsies. There was no evidence of celiac disease, everything looked pretty normal (though some unspecified inflammation was noted) and some biopsies were taken to check his enzyme activity. They were later sent to Mayo, who confirmed the diagnosis in October of 2009: glucoamylase deficiency.
It took quite a while before we got everything settled with his diet, and there were many times when his symptoms would flare up until I discovered the cause. When we first removed starches, I increased the amount of sweet potatoes he ate, and that's how I began to to realize that maltose was likely a problem too. By January 2010 he was maltose-free too.
In the fall of 2010 he started having more and more symptoms, almost as bad as before. We went to an allergist, who diagnosed a severe tree nut allergy. No nuts for him... we cried. In the office, in the car, and all the way home.
In January of 2011 we went back to be retested, because I wanted to be sure. The test showed that he had only a very mild reaction to almonds, no reaction to any other nut, and a very strong allergy to wheat. Though he was starch free, but I wasn't really focused on gluten-free after the negative celiac disease diagnosis (and a no-starch diet is effectively no-gluten too). Since January 2011, he's been gluten free too, and I've been much more vigilant about it.
In retrospect, I wonder if he had had some hidden wheat or gluten that had exasperated his symptoms. I'll never know, but after 4 months of no *anything* going back to a plain starch-free diet was a relief, and it suddenly seemed much easier. So we did get something very valuable out of that experience: it can always be worse.
At the same time that we saw the allergist, we requested a consultation with Texas Children's Hospital. Dr. Buford Nichols (no longer practicing as far as I know) was a pioneer with this disorder, and did a great deal of research. We saw a different physician in this practice (actually, two physicians) who was also very experienced with it, and was conducting a study on glucoamylase deficiency. He recommended several tests, most of which we had done back in our home city. The only one that was not completed was a Fructose Absorption test... there is no lab in our area that has the ability to conduct it.
The tests that he ordered: CBC, Celiac (blood test), CRP, SED rate, liver panel, lipase
The allergist recommended in January 2011 that Sharky start taking probiotics. The specialist agreed in February 2011, and told me that he's found that the "r" bacteria (rhamnosus, reuteri... all the ones that start with "r") are especially beneficial for kids with this deficiency. Perhaps they munch on starch? I don't know. But I do know that probiotics have been amazing. Sharky went from sickly-sick-sick-sick before diagnosis to sickly-sick on a starch-free diet to Just A Normal Kid after we added the probiotics to his starch-free diet. Amazing.
We had a very difficult time finding a pediatrician that would actually listen to us. Finally, I found the fantastic pediatrician, who is still my children's primary doctor today.
At first, as it routine, she recommended all the routine treatments and all the routine tests. Increase the whole grains. X-Ray to see if he's constipated. Metamucil. Miralax. More Miralax. But unlike our previous pediatricians, she was able to see through all the noise of his symptoms and his history. She was able to see that I wasn't one of THOSE mothers. (It probably helped that I had two other perfectly healthy children.) And one spring day, after an incredibly difficult week and almost at the end of my rope, I made an appointment. As luck would have it, it was the last appointment of the day.
I went in, ready to demand a referral, and frustrated enough that I was almost on the verge of tears. She sat us down and listened to us, really LISTENED to us. And that moment was when everything started to turn around.
She agreed that we needed a referral. But she also wanted to speed the process along. So she ordered all the regular tests, and quite a few that she thought were likely to be needed, so that when we arrived at the pediatric gastroenterologist we'd be ready to talk about what was, and what wasn't, going on. On that day, she spent over 45 minutes with us. By the time we were leaving, everyone else was gone, including the office staff, and it was well after regular closing hours. But we had made a plan, and for the first time I left a doctor's office with hope that we could find a way to make my child feel better.
During the diagnostic process, especially in the fall of 2009 and the early spring of 2010, life was incredibly busy and my memory is a bit fuzzy. In order to refresh my memory, I have referred to his medical records. If we discussed something that wasn't noted in his record, such as why a particular test was chosen over another, I can only speculate.
The tests that our pediatrician ordered were pretty common: tests for parasites, tests for reducing substances in the stool. Occult blood, pH, WBC, and other analysis (fats that shouldn't be there, etc). He also had some blood work- CBC, CMP, TSH, free T4.
When we saw our pediatric gastroenterologist, she did a scope (upper and lower) and did some biopsies. There was no evidence of celiac disease, everything looked pretty normal (though some unspecified inflammation was noted) and some biopsies were taken to check his enzyme activity. They were later sent to Mayo, who confirmed the diagnosis in October of 2009: glucoamylase deficiency.
It took quite a while before we got everything settled with his diet, and there were many times when his symptoms would flare up until I discovered the cause. When we first removed starches, I increased the amount of sweet potatoes he ate, and that's how I began to to realize that maltose was likely a problem too. By January 2010 he was maltose-free too.
In the fall of 2010 he started having more and more symptoms, almost as bad as before. We went to an allergist, who diagnosed a severe tree nut allergy. No nuts for him... we cried. In the office, in the car, and all the way home.
In January of 2011 we went back to be retested, because I wanted to be sure. The test showed that he had only a very mild reaction to almonds, no reaction to any other nut, and a very strong allergy to wheat. Though he was starch free, but I wasn't really focused on gluten-free after the negative celiac disease diagnosis (and a no-starch diet is effectively no-gluten too). Since January 2011, he's been gluten free too, and I've been much more vigilant about it.
In retrospect, I wonder if he had had some hidden wheat or gluten that had exasperated his symptoms. I'll never know, but after 4 months of no *anything* going back to a plain starch-free diet was a relief, and it suddenly seemed much easier. So we did get something very valuable out of that experience: it can always be worse.
At the same time that we saw the allergist, we requested a consultation with Texas Children's Hospital. Dr. Buford Nichols (no longer practicing as far as I know) was a pioneer with this disorder, and did a great deal of research. We saw a different physician in this practice (actually, two physicians) who was also very experienced with it, and was conducting a study on glucoamylase deficiency. He recommended several tests, most of which we had done back in our home city. The only one that was not completed was a Fructose Absorption test... there is no lab in our area that has the ability to conduct it.
The tests that he ordered: CBC, Celiac (blood test), CRP, SED rate, liver panel, lipase
The allergist recommended in January 2011 that Sharky start taking probiotics. The specialist agreed in February 2011, and told me that he's found that the "r" bacteria (rhamnosus, reuteri... all the ones that start with "r") are especially beneficial for kids with this deficiency. Perhaps they munch on starch? I don't know. But I do know that probiotics have been amazing. Sharky went from sickly-sick-sick-sick before diagnosis to sickly-sick on a starch-free diet to Just A Normal Kid after we added the probiotics to his starch-free diet. Amazing.
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