This is rapidly becoming a family tradition--every spring, we get a diagnosis. (I am okay with stopping that tradition after this year, though.)
First, the man himself:
As you all probably remember, Type 1 Diabetes (hereafter T1D so I don't have to type so much) is an autoimmune disorder: the immune system, for unknown reasons, freaks out and starts killing beta cells in the pancreas, which are the cells that make insulin. Pretty much all autoimmune diseases can be summed up as "the immune system, for unknown reasons, freaks out and starts killing _____".
Some autoimmune diseases "travel" together--they're carried in the same bit of genetic code, they develop in response to the same environmental triggers, whatever, we really don't know. But we do know that, for instance, people with T1D are much more likely than the general population to get celiac disease.
Which, by the way, is our new diagnosis: celiac disease.
Celiac disease occurs when the immune system freaks out (told you) and decides that gluten, which is a protein found in wheat, barley, spelt, rye, and some oats, is the enemy. This mainly affects the digestive system, most severely in the intestines.
The intestines work to absorb your food by having a lot--I mean a lot--of surface area; they're covered in microscopic things called "villi"--under a microscope it sort of looks like velcro. The villi make it possible for you to absorb nutrients from your food. When you have celiac disease, however, the gut is on high alert all the time and so inflamed that the villi flatten out, which makes it really hard to absorb anything. You eat, but the food just doesn't really get into your body.
Thus the symptom that made us do testing: Bud's not really growing. (Neither is Eldest, although we haven't tested her yet.) We had some bloodwork done at his regular endocrinologist appointment (we see our endo every 3 months for his T1D) and it came back positive for celiac.
The nurse practitioner who called to tell me was upset on the phone; I really wasn't surprised.
Why wasn't I surprised? Well, because I always expect the worst (and this was not the worst, we were worried about his thyroid, liver, and kidneys too and by the grace of God they are all fine), and because celiac and diabetes just go together. In fact, celiac goes with a lot of things, which is why I'm writing the blog post. As I began researching it (approximately 5 minutes after we got the phone call), I discovered that celiac disease can cause/be linked with:
-psoriasis
-arthritis
-weird unexplained anemia
-iron deficiency
-vitamin deficiencies
-thyroid disorders
-unexplained fatigue
-"brain fog" -- memory problems, trouble with math, confusion, etc
-emotional ups and downs (beyond normal ones)
-osteoporosis (because calcium isn't absorbed)
-endometriosis
-a really painful rash called dermatitis herpeteformis (an itchy rash with blisters)
-migraines
-Sjorgren's disease
-eczema
-allergies
Pretty much the common factor in all of the above is that they are either an autoimmune disorder or they are caused by malabsorption/starvation--anemia, for instance, would be caused both because the inside of the gut is raw and in many cases bleeding, and because the body just can't absorb enough iron to make blood cells with.
Some people who have celiac have gastrointestinal symptoms: diarrhea/constipation, a lot of stomach aches, etc. But many don't have symptoms, or have had them for so long that they don't recognize them as odd. (My sister, when I mentioned this, told me that before she understood she was allergic to chocolate, she thought *everyone* got a slight sore throat every time they ate chocolate.)
So when I saw the list above, if you share DNA with me, you know that I suddenly started nodding and ticking off on my fingers the family members I have who are affected by those illnesses. (Hint: not very many of us don't have at least one, most of us have several.)
Turns out that celiac disease has a strong genetic component--if you have a first-degree relative with celiac, you're much more likely to get it than the general population. (Even in the general population it's not that rare: 1 in 100 people have celiac disease. By contrast, T1D affects 1 in every 10,000.) Celiac disease is also like other autoimmune disorders in that it is progressive, lifelong, and it can trigger other immune system issues.
In other words, it's not that crazy to think that celiac and non-celiac gluten sensitivity (which is a real thing) might have been rampaging through our genetics for generations. It would explain a lot, yeah?
So, what do you do about celiac disease?
In a way, that's the good news. There isn't medication to take--no pills, no needles, no patches, no $700 every three months (which is what we have to pay for diabetic testing strips--which is okay because Bud gets to stay alive, and that's always a bonus). I was happy not to have another pill to hand him.
Pretty much the only treatment for celiac disease is lifelong, strict adherence to a gluten-free diet. The gut will heal and be able to absorb nutrition again, and since we caught it early, we can stave off a lot of complications. Even people who already have some of the other stuff (psoriasis, etc.), though, can get relief from a gluten-free diet.
What do we mean, lifelong?
Pretty simple--he'll never grow out of celiac (any more than he will grow out of T1D), and will pretty much have to avoid gluten for the rest of his life.
What do we mean, strict adherence?
I mean strict. No "it's his birthday, let him have a regular gluteny birthday cake". No "just a bite." No "we don't want to make a fuss, just eat the crackers". To give you an idea, one instance of eating gluten in a celiac (the amount, say, in one crouton) can make them sick for six months. People who cheat on their gluten-free diet break bones, get scurvy, and die before their time.
What do we mean, gluten-free?
Well, it's pretty darn gluten-free. The safe amount of gluten in something for a celiac is 20ppm (parts per million). This means that not only can a celiac not eat anything that has gluten in it, but they can't use a knife that was used to spread mayo on regular bread to make themselves a sandwich on gluten-free bread--that's right, the gluten-free stuff can't even touch the gluten stuff. Crazy, huh?
Given all this, we've made the decision to just make our whole house gluten-free. I contemplated the kind of hospital OR-style procedures (and separate dishes and a separate toaster) that it would require to make gluten-free stuff for Bud and regular stuff for the rest of us, and then decided I just didn't like bread that much.
Where do we go from here?
I've been finding websites. Basically I have a month to study and prepare. We can't go gluten-free yet, although Bud's pretty miserable, because he has to have one more confirmation test and ironically he has to be sick for the test to show up as positive.
(This test is an endoscopic biopsy--we will go to Salt Lake to the same awesome hospital we were at before, they will put him under, put a small tube down his throat, and take a few tiny tissue samples from the top of his small intestine. I am more nervous about this than he is.)
He has to be eating gluten up to the time of the test, so I'm not changing anything in our house yet. In fact, I'm trying hard to use up all our gluteny food, because I'm going to have to do the mother of all housecleanings once we transition.
I am hopeful that going gluten-free will help Eldest with her growth issues, help my allergies to calm down, and just be all around better for us. We won't be able to eat out pretty much at all anymore, but we didn't eat out that much to begin with, and it should help us save money and be healthier, anyway.
It is possible to spend a million dollars being gluten-free. I suspect that's because nobody wants to cook from scratch. I already like cooking from scratch, and indeed, if you can get over the need to have bread and pasta every day, I don't see why our food bill shouldn't go down. Beans, rice, potatoes, and corn are all gluten-free.
At the moment my plan is to make everything--stock, yogurt, spaghetti sauce, jam, salsa, pickles, everything--myself. This should taste a lot better, and since I can buy bulk produce from a restaurant supply place here in town, should actually save us money. Plain meat is gluten free (obviously the frozen chicken strips or whatever are breaded and are *not*). There are a lot of meals you can eat that are gluten-free without any weird gymnastics.
Weirdest part of all this?
I have been a little frustrated at the beginning because it's one more thing for Bud to have to deal with, but it's a lot more doable and less scary to me than T1D was (anything's better than the threat of coma and death!) and we're really good at doing stuff ourselves. We have a foofy supermarket here that has a lot of gluten-free stuff while we transition (I'll buy a box of brown rice pasta to get us through if I have to) and even Walmart has a gluten-free section these days.
What's funny to me is how many things have gluten in them. Bullion cubes, spaghetti sauce, toothpaste, envelope glue, play-dough, some yogurt, some jelly, salad dressing, just about every single processed food, chipotle peppers in adobo sauce, most ice cream, cheap peanut butter, shampoo...the list goes on and on.
But there are a whole lot of things that *don't* have gluten in them:
-plain fresh and frozen fruit
-plain fresh and frozen vegetables
-Fritos (huzzah!)
-plain meats (and even some brands of sausage or hot dogs gluten-free)
-rice
-potatoes
-corn
-milk
-beans
That's a nice amount of stuff to build a diet on, there. There are even a lot of recipes for homemade gluten-free bread (I hear the storebought stuff isn't that great), which I may try my hand at on special occasions. I do happen, as well, to own an ice-cream maker (we bought it for $25 in Texas), so I can make ice cream that is cream, sugar, and strawberries (or whatever). Like I said, this should actually improve everyone's lives quite a bit.
I will probably be posting more when we get done with our other tests, but like the title of the post says, I wanted my family who reads this to be able to start going gluten-free *right now* if they feel like it would be helpful for them. (Although I want to make it very clear that WE DON'T EXPECT ANYONE TO GO GLUTEN FREE TO ACCOMMODATE US, we will just bring our own food when we visit you, okay? No worries.) I'll keep posting any tips and tricks I find on how to do it without spending a million dollars.
First, the man himself:
He is not doing his Ray Charles impression, he just thinks this is funny. This is the face (and green jammies) of Type 1 Diabetes. Just to prove we're doing great.
As you all probably remember, Type 1 Diabetes (hereafter T1D so I don't have to type so much) is an autoimmune disorder: the immune system, for unknown reasons, freaks out and starts killing beta cells in the pancreas, which are the cells that make insulin. Pretty much all autoimmune diseases can be summed up as "the immune system, for unknown reasons, freaks out and starts killing _____".
Some autoimmune diseases "travel" together--they're carried in the same bit of genetic code, they develop in response to the same environmental triggers, whatever, we really don't know. But we do know that, for instance, people with T1D are much more likely than the general population to get celiac disease.
Which, by the way, is our new diagnosis: celiac disease.
Random picture of Eldest, who 1) wanted her picture taken and 2) probably has celiac, too, because her growth has been off.
Celiac disease occurs when the immune system freaks out (told you) and decides that gluten, which is a protein found in wheat, barley, spelt, rye, and some oats, is the enemy. This mainly affects the digestive system, most severely in the intestines.
The intestines work to absorb your food by having a lot--I mean a lot--of surface area; they're covered in microscopic things called "villi"--under a microscope it sort of looks like velcro. The villi make it possible for you to absorb nutrients from your food. When you have celiac disease, however, the gut is on high alert all the time and so inflamed that the villi flatten out, which makes it really hard to absorb anything. You eat, but the food just doesn't really get into your body.
Thus the symptom that made us do testing: Bud's not really growing. (Neither is Eldest, although we haven't tested her yet.) We had some bloodwork done at his regular endocrinologist appointment (we see our endo every 3 months for his T1D) and it came back positive for celiac.
The nurse practitioner who called to tell me was upset on the phone; I really wasn't surprised.
Random picture of Sasquatch, who has eschewed pants for the day.
Why wasn't I surprised? Well, because I always expect the worst (and this was not the worst, we were worried about his thyroid, liver, and kidneys too and by the grace of God they are all fine), and because celiac and diabetes just go together. In fact, celiac goes with a lot of things, which is why I'm writing the blog post. As I began researching it (approximately 5 minutes after we got the phone call), I discovered that celiac disease can cause/be linked with:
-psoriasis
-arthritis
-weird unexplained anemia
-iron deficiency
-vitamin deficiencies
-thyroid disorders
-unexplained fatigue
-"brain fog" -- memory problems, trouble with math, confusion, etc
-emotional ups and downs (beyond normal ones)
-osteoporosis (because calcium isn't absorbed)
-endometriosis
-a really painful rash called dermatitis herpeteformis (an itchy rash with blisters)
-migraines
-Sjorgren's disease
-eczema
-allergies
Pretty much the common factor in all of the above is that they are either an autoimmune disorder or they are caused by malabsorption/starvation--anemia, for instance, would be caused both because the inside of the gut is raw and in many cases bleeding, and because the body just can't absorb enough iron to make blood cells with.
Some people who have celiac have gastrointestinal symptoms: diarrhea/constipation, a lot of stomach aches, etc. But many don't have symptoms, or have had them for so long that they don't recognize them as odd. (My sister, when I mentioned this, told me that before she understood she was allergic to chocolate, she thought *everyone* got a slight sore throat every time they ate chocolate.)
Random chicken picture. I think we all need a deep breath, and this picture of a chubby offended chicken might help. We call this hen Booty McWidebutt.
So when I saw the list above, if you share DNA with me, you know that I suddenly started nodding and ticking off on my fingers the family members I have who are affected by those illnesses. (Hint: not very many of us don't have at least one, most of us have several.)
Turns out that celiac disease has a strong genetic component--if you have a first-degree relative with celiac, you're much more likely to get it than the general population. (Even in the general population it's not that rare: 1 in 100 people have celiac disease. By contrast, T1D affects 1 in every 10,000.) Celiac disease is also like other autoimmune disorders in that it is progressive, lifelong, and it can trigger other immune system issues.
In other words, it's not that crazy to think that celiac and non-celiac gluten sensitivity (which is a real thing) might have been rampaging through our genetics for generations. It would explain a lot, yeah?
That's great. Here's a random picture of baby bunny butts from my rabbits. That mama rabbit is Sky. Her sister Diamond is still alive but the other sister Lucy was mean so we ate her.
So, what do you do about celiac disease?
In a way, that's the good news. There isn't medication to take--no pills, no needles, no patches, no $700 every three months (which is what we have to pay for diabetic testing strips--which is okay because Bud gets to stay alive, and that's always a bonus). I was happy not to have another pill to hand him.
Pretty much the only treatment for celiac disease is lifelong, strict adherence to a gluten-free diet. The gut will heal and be able to absorb nutrition again, and since we caught it early, we can stave off a lot of complications. Even people who already have some of the other stuff (psoriasis, etc.), though, can get relief from a gluten-free diet.
What do we mean, lifelong?
Pretty simple--he'll never grow out of celiac (any more than he will grow out of T1D), and will pretty much have to avoid gluten for the rest of his life.
What do we mean, strict adherence?
I mean strict. No "it's his birthday, let him have a regular gluteny birthday cake". No "just a bite." No "we don't want to make a fuss, just eat the crackers". To give you an idea, one instance of eating gluten in a celiac (the amount, say, in one crouton) can make them sick for six months. People who cheat on their gluten-free diet break bones, get scurvy, and die before their time.
What do we mean, gluten-free?
Well, it's pretty darn gluten-free. The safe amount of gluten in something for a celiac is 20ppm (parts per million). This means that not only can a celiac not eat anything that has gluten in it, but they can't use a knife that was used to spread mayo on regular bread to make themselves a sandwich on gluten-free bread--that's right, the gluten-free stuff can't even touch the gluten stuff. Crazy, huh?
Given all this, we've made the decision to just make our whole house gluten-free. I contemplated the kind of hospital OR-style procedures (and separate dishes and a separate toaster) that it would require to make gluten-free stuff for Bud and regular stuff for the rest of us, and then decided I just didn't like bread that much.
Where do we go from here?
I've been finding websites. Basically I have a month to study and prepare. We can't go gluten-free yet, although Bud's pretty miserable, because he has to have one more confirmation test and ironically he has to be sick for the test to show up as positive.
(This test is an endoscopic biopsy--we will go to Salt Lake to the same awesome hospital we were at before, they will put him under, put a small tube down his throat, and take a few tiny tissue samples from the top of his small intestine. I am more nervous about this than he is.)
He has to be eating gluten up to the time of the test, so I'm not changing anything in our house yet. In fact, I'm trying hard to use up all our gluteny food, because I'm going to have to do the mother of all housecleanings once we transition.
I am hopeful that going gluten-free will help Eldest with her growth issues, help my allergies to calm down, and just be all around better for us. We won't be able to eat out pretty much at all anymore, but we didn't eat out that much to begin with, and it should help us save money and be healthier, anyway.
It is possible to spend a million dollars being gluten-free. I suspect that's because nobody wants to cook from scratch. I already like cooking from scratch, and indeed, if you can get over the need to have bread and pasta every day, I don't see why our food bill shouldn't go down. Beans, rice, potatoes, and corn are all gluten-free.
At the moment my plan is to make everything--stock, yogurt, spaghetti sauce, jam, salsa, pickles, everything--myself. This should taste a lot better, and since I can buy bulk produce from a restaurant supply place here in town, should actually save us money. Plain meat is gluten free (obviously the frozen chicken strips or whatever are breaded and are *not*). There are a lot of meals you can eat that are gluten-free without any weird gymnastics.
Weirdest part of all this?
I have been a little frustrated at the beginning because it's one more thing for Bud to have to deal with, but it's a lot more doable and less scary to me than T1D was (anything's better than the threat of coma and death!) and we're really good at doing stuff ourselves. We have a foofy supermarket here that has a lot of gluten-free stuff while we transition (I'll buy a box of brown rice pasta to get us through if I have to) and even Walmart has a gluten-free section these days.
What's funny to me is how many things have gluten in them. Bullion cubes, spaghetti sauce, toothpaste, envelope glue, play-dough, some yogurt, some jelly, salad dressing, just about every single processed food, chipotle peppers in adobo sauce, most ice cream, cheap peanut butter, shampoo...the list goes on and on.
But there are a whole lot of things that *don't* have gluten in them:
-plain fresh and frozen fruit
-plain fresh and frozen vegetables
-Fritos (huzzah!)
-plain meats (and even some brands of sausage or hot dogs gluten-free)
-rice
-potatoes
-corn
-milk
-beans
That's a nice amount of stuff to build a diet on, there. There are even a lot of recipes for homemade gluten-free bread (I hear the storebought stuff isn't that great), which I may try my hand at on special occasions. I do happen, as well, to own an ice-cream maker (we bought it for $25 in Texas), so I can make ice cream that is cream, sugar, and strawberries (or whatever). Like I said, this should actually improve everyone's lives quite a bit.
I will probably be posting more when we get done with our other tests, but like the title of the post says, I wanted my family who reads this to be able to start going gluten-free *right now* if they feel like it would be helpful for them. (Although I want to make it very clear that WE DON'T EXPECT ANYONE TO GO GLUTEN FREE TO ACCOMMODATE US, we will just bring our own food when we visit you, okay? No worries.) I'll keep posting any tips and tricks I find on how to do it without spending a million dollars.
