So from all of the blogs I've read and the comments people send me, it seems like lots of POTSies have tested positive for Celiac Disease, which is an autoimmune condition in which your body produces harmful antibodies whenever you eat anything that contains gluten. Gluten is a protein found in wheat, rye, barley and some other grains. These antibodies can attack your GI tract, and in some causes your thyroid and your nerves - amongst other regions of the body.
Other people test negative for Celiac Disease, but still see an improvement in their overall health when they switch to a low gluten or gluten free diet. I am in this category of people. I was having terrible GI symptoms for 9 months straight, and when I switched to a strict gluten free ("GF") diet, within a few days my GI symptoms started to improve and within 2 weeks I had more energy than I had in the previous 9 months. I have been on a GF diet for 9 months now, and I am continuing to feel better and have more energy, although I still have POTS. My horrendous GI symptoms are almost totally gone. I will never know for sure whether switching to a GF diet caused this improvement, but when you are as sick as I was (and I know most of your POTSies are super sick), you will try just about anything to feel better and get your life back.
There are numerous antibody tests to look for Celiac Disease. However, these antibody tests are not useful if you have already been eating a low gluten or gluten free diet. There are also several Celiac genetic tests that can be run, and those still work whether you have been eating gluten or not. No blood test is 100% accurate to confirm Celiac, and most doctors consider an intestinal biopsy to be the most accurate way to diagnose Celiac.
I am not going to try to write a dissertation on Celiac symptoms and diagnosis - there are many good websites out there on Celiac already. I am going to give you a list of products I found very useful when I was getting use to my new GF diet. I can seem hard to make the switch at first, but once you learn some tricks, you probably won't miss gluten products. The only thing I really miss is semolina flour Italian bread, because there is no GF version of this - but someone will probably invent it soon!
First, you should take the time to learn what has gluten in it. There are websites that can help you with this and if you have Celiac and you're not 100% sure, just don't eat it! Your long term health is more important than that salad dressing with a mystery ingredient in it. You will have to start reading ingredient labels on everything. There are obvious gluten ingredients, like wheat and rye and barley, but then there are not so obvious things made from these products - like malt - which is made from barley and soy sauce, which is commonly made with wheat.
There are lots of brands that are labeled "gluten free" now, and there are also lots of things that are naturally gluten free and don't necessarily have a label on them (like most dairy, fruit, fish, meat, fish and poultry). Be careful with packaged meat though, because lots of times they add spices and preservatives or marinades to packaged meats, so read the label to see if there are any gluten containing ingredients. Same with dairy - sometimes yogurts and whip creams contain "natural flavors" or vanilla flavoring, and both of those may contain gluten - unless it says gluten free-don't risk it.
Here are the products I found to be helpful when I first switched to GF:
Bob's Red Mill All Purpose Baking Flour - this can be used like Wondra to thicken gravy, as a 1 for 1 exchange for regular flour when you bake cookies and cakes or whatever you use regular flour in. I have bought lots of different Bob's Red Mill GF products, and I liked all of them so far. Their cornbread mix is also yummy.
Bob's Red Mill Xantham Gum - a good clear thickener for gravy and soups, and I like to add 1 tsp. for every cup of flour when use the all purpose baking flour. Gluten provides the chewy moistness to baked goods, so when you take the gluten out, you want sometime to replace that and Xantham Gum does the trick.
San Jay Gluten Free Tamari Sauce - most soy sauce has wheat in it, but this does not and it tastes just like regular soy sauce. Technically, it's Tamari sauce, which is just high grade soy sauce.
Asian rice noodles and Mung Bean noodles (lots of iron in these!) - learn to love noodles - cold noodle salad with a tbsp. of peanut butter and a splash of your GF soy sauce and some fresh snap peas is so yummy. Heat it up and throw in some soy marinated beef and you've got dinner.
Rice flour egg roll wraps - use these to make spring rolls, egg rolls or tex mex spinach roll ups like the ones at Chile's. I have even stuffed them with beans, rice and cheese and eaten them like a burrito.
DeBoles gluten free corn pasta-any shape. This is probably the closest tasting to "regular" pasta that I've had since I went GF. It's so good, my family didn't even realize it was GF. Also good because they are vitamin fortified. Most GF flour products are not vitamin fortified, unless regular pastas, breads and flour containing products.
OrganicVille GF Mustard and Ketchup- most mustards and ketchupsGF if they have vinegar in them (until you have to time to research which products have GF vinegar and which do not).
Conte's Pasta Company (Vineland, NJ) - cheese and spinach raviolis, manicotti, stuffed shells, etc. - if you are lucky enough to see this in your local foodstore - buy as much as your freezer will hold! I think you can order them online from the company directly too. This also passes the "this doesn't taste gluten free" test.
Taco shells, tortilla chips and soft corn tortillas -lots of brands are GF because these are corn based products. Just google the brand before you buy it.
Corn Polenta-great lightly fried and served with marinara sauce sauce when the rest of your family is eating regular pasta.
Rustic corn bread made without regular flour - if you feel to need for something bready, this is a good GF option. Goes great with black bean soup, or make it with a little cinnamon and butter as more of a breakfast treat.
Mary's Gone Crackers - their quinoa and brown rice crackers are so yummy and super healthy for you. They also made sea salt "sticks and twigs" which is like a nutty sesame seed flavored pretzel. Note, I am not a far of their cookies, which seemed to dry to me.
Aleia's Oatmeal Raisin cookies-OMG! These are better than any "regular" oatmeal raisin cookies you can get in the foodstore. They taste like grandma's homeade straight out of the oven. They can be pretty pricy ($9-10 per bag), but you get more cookies in them than most other cookie packages and they are so worth it for that once in blue moon sugary snack.
Snyders of Hanover-GF pretzels sticks. These taste exactly like regular pretzel sticks. Awesome!
Udi's-this GF company makes really good White Bread, Bagels and Muffins. I am addicted to the chocolate chocolate chip muffins, which taste more like cupcakes to me than muffins (I indulge my tastebuds with GF icing on those sometimes). The White Bread tastes just like regular white bread if you toast it, but it is a little on the dry side (like many GF baked goods) if you eat it fresh. I keep the bagels and bread in the freezer and just toast them before I use them. I also use leftovers of the bread and bagels to make my own toasted breadcrumbs or salad croutons. Udi's always has $1 off coupons on their website, and you can print like 100 of them.
Glutino GF Crackers - these don't taste GF - they taste kind of like Ritz crackers. The come in cheddar, herb and other flavors - all good!
Rice Chex-Chex removed the malt from these to make them gluten free, which is pretty cool. Eat them for breakfast or use them as a base for your own zesty Chex mix snack.
Kozy Shack puddings - GLUTEN FREE and soooooo good!
Think Thin bars - these are GF energy bars that are packed with vitamins and they come in all sorts of indulgent flavors like brownie crunch, cookies and cream, peanut butter, etc.
I don't drink alcohol since it makes low blood pressure worse, but if you are a beer drinker, I hear there are several brands of gluten free beer. Don't drink your regular beer because it almost certainly contains barley, which has gluten.
Trader Joe's has an online list of everything they know for sure is gluten free in their store, and they have started putting little G logos on their own brand products that are gluten free.
Whole Foods has lots of GF items, and they have started putting gluten free stickers on the shelves under some of their GF products, but not every product yet, at least in my local store.
Stop and Shop has a good gluten free section.
Ask your local foodstore to start carrying some GF items. The more people who ask for these products, the more you will start to see them in stores.
And don't forget, even if you have no medical reason not to eat gluten, you will probably be eating healthier by skipping some of the white breads, pasta and sugary baked goods anyway. There may be a reason so many people are being diagnosed with Celiac now. I think it's because America eats to much gluten! Once you start looking, you realize it is in almost ALL processed food. There is no such thing as Celiac in countries that don't eat all the processed foods like we do.
Happy GF eating!
Other people test negative for Celiac Disease, but still see an improvement in their overall health when they switch to a low gluten or gluten free diet. I am in this category of people. I was having terrible GI symptoms for 9 months straight, and when I switched to a strict gluten free ("GF") diet, within a few days my GI symptoms started to improve and within 2 weeks I had more energy than I had in the previous 9 months. I have been on a GF diet for 9 months now, and I am continuing to feel better and have more energy, although I still have POTS. My horrendous GI symptoms are almost totally gone. I will never know for sure whether switching to a GF diet caused this improvement, but when you are as sick as I was (and I know most of your POTSies are super sick), you will try just about anything to feel better and get your life back.
There are numerous antibody tests to look for Celiac Disease. However, these antibody tests are not useful if you have already been eating a low gluten or gluten free diet. There are also several Celiac genetic tests that can be run, and those still work whether you have been eating gluten or not. No blood test is 100% accurate to confirm Celiac, and most doctors consider an intestinal biopsy to be the most accurate way to diagnose Celiac.
I am not going to try to write a dissertation on Celiac symptoms and diagnosis - there are many good websites out there on Celiac already. I am going to give you a list of products I found very useful when I was getting use to my new GF diet. I can seem hard to make the switch at first, but once you learn some tricks, you probably won't miss gluten products. The only thing I really miss is semolina flour Italian bread, because there is no GF version of this - but someone will probably invent it soon!
First, you should take the time to learn what has gluten in it. There are websites that can help you with this and if you have Celiac and you're not 100% sure, just don't eat it! Your long term health is more important than that salad dressing with a mystery ingredient in it. You will have to start reading ingredient labels on everything. There are obvious gluten ingredients, like wheat and rye and barley, but then there are not so obvious things made from these products - like malt - which is made from barley and soy sauce, which is commonly made with wheat.
There are lots of brands that are labeled "gluten free" now, and there are also lots of things that are naturally gluten free and don't necessarily have a label on them (like most dairy, fruit, fish, meat, fish and poultry). Be careful with packaged meat though, because lots of times they add spices and preservatives or marinades to packaged meats, so read the label to see if there are any gluten containing ingredients. Same with dairy - sometimes yogurts and whip creams contain "natural flavors" or vanilla flavoring, and both of those may contain gluten - unless it says gluten free-don't risk it.
Here are the products I found to be helpful when I first switched to GF:
Bob's Red Mill All Purpose Baking Flour - this can be used like Wondra to thicken gravy, as a 1 for 1 exchange for regular flour when you bake cookies and cakes or whatever you use regular flour in. I have bought lots of different Bob's Red Mill GF products, and I liked all of them so far. Their cornbread mix is also yummy.
Bob's Red Mill Xantham Gum - a good clear thickener for gravy and soups, and I like to add 1 tsp. for every cup of flour when use the all purpose baking flour. Gluten provides the chewy moistness to baked goods, so when you take the gluten out, you want sometime to replace that and Xantham Gum does the trick.
San Jay Gluten Free Tamari Sauce - most soy sauce has wheat in it, but this does not and it tastes just like regular soy sauce. Technically, it's Tamari sauce, which is just high grade soy sauce.
Asian rice noodles and Mung Bean noodles (lots of iron in these!) - learn to love noodles - cold noodle salad with a tbsp. of peanut butter and a splash of your GF soy sauce and some fresh snap peas is so yummy. Heat it up and throw in some soy marinated beef and you've got dinner.
Rice flour egg roll wraps - use these to make spring rolls, egg rolls or tex mex spinach roll ups like the ones at Chile's. I have even stuffed them with beans, rice and cheese and eaten them like a burrito.
DeBoles gluten free corn pasta-any shape. This is probably the closest tasting to "regular" pasta that I've had since I went GF. It's so good, my family didn't even realize it was GF. Also good because they are vitamin fortified. Most GF flour products are not vitamin fortified, unless regular pastas, breads and flour containing products.
OrganicVille GF Mustard and Ketchup- most mustards and ketchupsGF if they have vinegar in them (until you have to time to research which products have GF vinegar and which do not).
Conte's Pasta Company (Vineland, NJ) - cheese and spinach raviolis, manicotti, stuffed shells, etc. - if you are lucky enough to see this in your local foodstore - buy as much as your freezer will hold! I think you can order them online from the company directly too. This also passes the "this doesn't taste gluten free" test.
Taco shells, tortilla chips and soft corn tortillas -lots of brands are GF because these are corn based products. Just google the brand before you buy it.
Corn Polenta-great lightly fried and served with marinara sauce sauce when the rest of your family is eating regular pasta.
Rustic corn bread made without regular flour - if you feel to need for something bready, this is a good GF option. Goes great with black bean soup, or make it with a little cinnamon and butter as more of a breakfast treat.
Mary's Gone Crackers - their quinoa and brown rice crackers are so yummy and super healthy for you. They also made sea salt "sticks and twigs" which is like a nutty sesame seed flavored pretzel. Note, I am not a far of their cookies, which seemed to dry to me.
Aleia's Oatmeal Raisin cookies-OMG! These are better than any "regular" oatmeal raisin cookies you can get in the foodstore. They taste like grandma's homeade straight out of the oven. They can be pretty pricy ($9-10 per bag), but you get more cookies in them than most other cookie packages and they are so worth it for that once in blue moon sugary snack.
Snyders of Hanover-GF pretzels sticks. These taste exactly like regular pretzel sticks. Awesome!
Udi's-this GF company makes really good White Bread, Bagels and Muffins. I am addicted to the chocolate chocolate chip muffins, which taste more like cupcakes to me than muffins (I indulge my tastebuds with GF icing on those sometimes). The White Bread tastes just like regular white bread if you toast it, but it is a little on the dry side (like many GF baked goods) if you eat it fresh. I keep the bagels and bread in the freezer and just toast them before I use them. I also use leftovers of the bread and bagels to make my own toasted breadcrumbs or salad croutons. Udi's always has $1 off coupons on their website, and you can print like 100 of them.
Glutino GF Crackers - these don't taste GF - they taste kind of like Ritz crackers. The come in cheddar, herb and other flavors - all good!
Rice Chex-Chex removed the malt from these to make them gluten free, which is pretty cool. Eat them for breakfast or use them as a base for your own zesty Chex mix snack.
Kozy Shack puddings - GLUTEN FREE and soooooo good!
Think Thin bars - these are GF energy bars that are packed with vitamins and they come in all sorts of indulgent flavors like brownie crunch, cookies and cream, peanut butter, etc.
I don't drink alcohol since it makes low blood pressure worse, but if you are a beer drinker, I hear there are several brands of gluten free beer. Don't drink your regular beer because it almost certainly contains barley, which has gluten.
Trader Joe's has an online list of everything they know for sure is gluten free in their store, and they have started putting little G logos on their own brand products that are gluten free.
Whole Foods has lots of GF items, and they have started putting gluten free stickers on the shelves under some of their GF products, but not every product yet, at least in my local store.
Stop and Shop has a good gluten free section.
Ask your local foodstore to start carrying some GF items. The more people who ask for these products, the more you will start to see them in stores.
And don't forget, even if you have no medical reason not to eat gluten, you will probably be eating healthier by skipping some of the white breads, pasta and sugary baked goods anyway. There may be a reason so many people are being diagnosed with Celiac now. I think it's because America eats to much gluten! Once you start looking, you realize it is in almost ALL processed food. There is no such thing as Celiac in countries that don't eat all the processed foods like we do.
Happy GF eating!
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