Anyone with Celiacs?

JReeds9 · April 2012

Went to the Dr today for some stomach/GI issues I have been having. He's sending me for blood work to check for Celiac's disease. I've heard of this before but I don't have a lot of info on it. I've been doing some research since my appt and I do have most of the symptoms so it sounds like if this is it most of my troubles I've been having will be cleared up. I'd like to hear from people who have this, or if you knw someone who has it. How has this effected your life. Obviously a change in diet is going to be necessary. How easy of a transition was it? I know I'm a little ahead of the game since I haven't been officially diagnosed with this yet but I like to have as much info as I can when it comes to this stuff so I am better prepared.

TIA!

LesPaul · April 2012

A close friend of mine has Celiac's, so I've learned a lot about being GF in the last few years. There are more and more resources out there, and several good blogs for recipes. My friend sometimes has trouble at restaurants, but cooking at home is very easy. Watch for additives in spices and marinades (heck, even vitamins) as gluten is often added to products for binding purposes. Clean Eating magazine is good, as are Cooking Light and Real Simple (they all identify the GF recipes). Bob's Red Mill makes a GF bread mix that tastes like regular bread. Udi's and Rudy's products are good, but very expensive. It's an adjustment, but not impossible. Good luck!

JReeds9 · April 2012

LesPaul:
A close friend of mine has Celiac's, so I've learned a lot about being GF in the last few years. There are more and more resources out there, and several good blogs for recipes. My friend sometimes has trouble at restaurants, but cooking at home is very easy. Watch for additives in spices and marinades (heck, even vitamins) as gluten is often added to products for binding purposes. Clean Eating magazine is good, as are Cooking Light and Real Simple (they all identify the GF recipes). Bob's Red Mill makes a GF bread mix that tastes like regular bread. Udi's and Rudy's products are good, but very expensive. It's an adjustment, but not impossible. Good luck!

Thank you! The more I read the more I realize how much food has gluten in it! If I do have to do this it will be hard. Well worth it though, I'm sure. Considering how much pain and uncomfortableness ( is that a word?! lol) I've been dealing with I'd do pretty much anything at this point to get it to stop.

LesPaul · April 2012

Oh, and Amazon has a GF section of their grocery listings.

beach101010 · April 2012

I'm a Celiac. It;s not bad it takes some getting used to and learning a lot of information regarding how to read a food label and finding restaurants that have GF (gluten free menus)

I live in NY and find the website YELP helpful for finding restaurants that have gluten free selections of the foods I sometimes crave like pasta and pizza.

there are many grocery stores that have gluten free products like pasta, pretzels, cake..food you might miss.

I have been gluten free for just shy of a year now and it has been a process but I feel great! I have been "glutenized" where I have ingested some type of gluten by product and shortly after will have major stomach pain and lets just say other issues...

keep in mind the testing for celiacs is not the greatest, if your blood work suggest you have antibodies you than have to have an endoscopy of your stomach to check for damage. I would say if you have the antibodies and no stomach damage try a gluten free diet and see how you feel

cahistoryteacher · April 2012

I have Celiac, sadly- welcome to the club. If your blood levels come back positive you will likely need to have an upper gi endoscopy done where they will do a biopsy of your upper intestine. This is the "gold standard" for diagnosis. Do not start doing gluten free until you've been handed a diagnosis as it can mess up the results if you start early. Whole foods and Trader Joe's have been fabulous. There are so many options at the stores now. It you google Celiac's disease the various foundation/organization/association websites are all helpful. "The Gluten Free Bible" was my favorite book for explaining everything, and I liked the author's sense of humor. For baking my favorite cookbook is "Easy Gluten Free Baking" by Elizabeth Barbone. I hate the gluten free all purpose flour mixes. They are not good for baking. We invested the different flours and it makes all the difference to have the options. Do your research on products, gluten is in so many things. Luckily many companies and restaurants are much more aware of the being gluten free and have options (Outback and Pf Chang's have been the best so far). Good luck!!

SaraKathryn · April 2012

I have it, I was diagnosed in Aug 2010. It was a little difficult at first, but the diet is very easy now. Going out to eat can be a little tricky, but I just order meat or fish plain with double veggies or rice. It is becoming pretty popular to be GF so there are a lot of brands that mark things now. I lost 10 lbs from being on the diet, since I basically ditched bread and pasta. Good Luck!

If you get a positive dx, make sure everyone in your family gets tested. My mom got dx'd after I did. It is genetic.

anonymess · April 2012

I just had blood drawn today for the same testing. I cannot imagine what a change it will be to have to eat gluten-free. Fingers crossed for both of us!

Rock_Lobster · April 2012

I have celiac (it's not named after a person, so just 'celiac').

I've been gluten free since 2005. The first few weeks/months are tough. Everything seems weird and scary (don't underestimate the psychological effect of realizing that you've been poisoning yourself with your favorite foods for years - you kind of feel like the rug has been pulled out from under you when you get home from the doctor and realize that you can't eat anything in your cupboards).

There is a lot to learn, but since 2008 there has been mandatory labeling of the top 8 allergens (wheat is one of these) which makes things a lot easier.

In the last few years, many companies have been adding "gluten free" to their labels and information on their websites. When I first changed my diet, I remember standing in the grocery store aisle calling 800 numbers to find out what was in certain things that were confusingly labeled, but now it's much easier.

In general, my advice is to avoid most of the gf substitute foods. They are always very expensive and rarely as good as the real thing. One bread that I do like, when I eat bread, is Udi's. For the most part I just changed the way that I eat and don't do much bread, baked stuff or pasta anymore. The good news is that eventually your tastes will change, and you'll forget what "real" stuff tastes like, and the gf products that seemed hideous at first will start to seem pretty darn tasty.

Also, be prepared for some weird moments down the road when the reality that this is for forever sets in. Once time I almost burst into tears in the grocery store because there was a big Twinkie display and it hit me that I can never eat a Twinkie again. I don't even like Twinkies, but knowing that they are forever off limits to me was kind of a hard moment.

JReeds9 · April 2012

beach101010:

keep in mind the testing for celiacs is not the greatest, if your blood work suggest you have antibodies you than have to have an endoscopy of your stomach to check for damage. I would say if you have the antibodies and no stomach damage try a gluten free diet and see how you feel

Question about the testing...I had some blood work done a few weeks ago and it came back that I had elevated Basophils. That is part of what led the Dr to do some furhter testing so now I had more blood work done to directly check for celiacs. When you had bloodwork done do you know if you had elevated basophils?

JReeds9 · April 2012

anonymess:
I just had blood drawn today for the same testing. I cannot imagine what a change it will be to have to eat gluten-free. Fingers crossed for both of us!

Good luck to you!

JReeds9 · April 2012

anonymess:
I just had blood drawn today for the same testing. I cannot imagine what a change it will be to have to eat gluten-free. Fingers crossed for both of us!

Good luck to you!

JReeds9 · April 2012

Rock_Lobster:

I have celiac (it's not named after a person, so just 'celiac').

I've been gluten free since 2005. The first few weeks/months are tough. Everything seems weird and scary (don't underestimate the psychological effect of realizing that you've been poisoning yourself with your favorite foods for years - you kind of feel like the rug has been pulled out from under you when you get home from the doctor and realize that you can't eat anything in your cupboards).

There is a lot to learn, but since 2008 there has been mandatory labeling of the top 8 allergens (wheat is one of these) which makes things a lot easier.

In the last few years, many companies have been adding "gluten free" to their labels and information on their websites. When I first changed my diet, I remember standing in the grocery store aisle calling 800 numbers to find out what was in certain things that were confusingly labeled, but now it's much easier.

In general, my advice is to avoid most of the gf substitute foods. They are always very expensive and rarely as good as the real thing. One bread that I do like, when I eat bread, is Udi's. For the most part I just changed the way that I eat and don't do much bread, baked stuff or pasta anymore. The good news is that eventually your tastes will change, and you'll forget what "real" stuff tastes like, and the gf products that seemed hideous at first will start to seem pretty darn tasty.

Also, be prepared for some weird moments down the road when the reality that this is for forever sets in. Once time I almost burst into tears in the grocery store because there was a big Twinkie display and it hit me that I can never eat a Twinkie again. I don't even like Twinkies, but knowing that they are forever off limits to me was kind of a hard moment.

What a dope I am, lol! I corrected my mistake. Thank you for that because when I finalyl realized it myself I would have felt like a big @sshole :^)

Thank you for your very real, honest input. I think it's just hitting me this morning what a big deal this will be if I do have this. My first thought yesterday was "finally I may have some answers!" Now I'm nervous because this will change my entire way of living. Like you said with the Twinkies....I don't like them either but knowing that things like that are off limits and not just because I want to drop a few pounds is a little heavy to deal with right now. It's an odd feeling.

JReeds9 · April 2012

I want to thank you all for your advice, input and tips. I appreciate it! Had my blood drawn today so hopefully I'll know more in a few days. Got my fingers crossed!

cahistoryteacher · April 2012

JReeds9:
Rock_Lobster:

I have celiac (it's not named after a person, so just 'celiac').

I've been gluten free since 2005. The first few weeks/months are tough. Everything seems weird and scary (don't underestimate the psychological effect of realizing that you've been poisoning yourself with your favorite foods for years - you kind of feel like the rug has been pulled out from under you when you get home from the doctor and realize that you can't eat anything in your cupboards).

There is a lot to learn, but since 2008 there has been mandatory labeling of the top 8 allergens (wheat is one of these) which makes things a lot easier.

In the last few years, many companies have been adding "gluten free" to their labels and information on their websites. When I first changed my diet, I remember standing in the grocery store aisle calling 800 numbers to find out what was in certain things that were confusingly labeled, but now it's much easier.

In general, my advice is to avoid most of the gf substitute foods. They are always very expensive and rarely as good as the real thing. One bread that I do like, when I eat bread, is Udi's. For the most part I just changed the way that I eat and don't do much bread, baked stuff or pasta anymore. The good news is that eventually your tastes will change, and you'll forget what "real" stuff tastes like, and the gf products that seemed hideous at first will start to seem pretty darn tasty.

Also, be prepared for some weird moments down the road when the reality that this is for forever sets in. Once time I almost burst into tears in the grocery store because there was a big Twinkie display and it hit me that I can never eat a Twinkie again. I don't even like Twinkies, but knowing that they are forever off limits to me was kind of a hard moment.

What a dope I am, lol! I corrected my mistake. Thank you for that because when I finalyl realized it myself I would have felt like a big @sshole :^)

Thank you for your very real, honest input. I think it's just hitting me this morning what a big deal this will be if I do have this. My first thought yesterday was "finally I may have some answers!" Now I'm nervous because this will change my entire way of living. Like you said with the Twinkies....I don't like them either but knowing that things like that are off limits and not just because I want to drop a few pounds is a little heavy to deal with right now. It's an odd feeling.

For me it was the nachos and churros at the hockey games(my 2 bad food indulgences). Never getting a real churro again was sad. In the "Gluten Free Bible" I recommended the author says you HAVE to go through a mourning period with your food. Don't let anyone tell you its silly or to just get over it, it's just food. It's a loss and a big permanent one at that. As she says "you have to mourn the loss of the food otherwise you will just end up being bitter towards spaghetti the rest of your life." On the bright side, it has gotten me out of eating some of my mother-in-law's and one of my coworker's "food" because they stink at reading labels and I just go "oh darn... there's gluten in this, sorry I can't have any of this" and walk away.

JReeds9 · April 2012

cahistoryteacher:
JReeds9:
Rock_Lobster:

I have celiac (it's not named after a person, so just 'celiac').

I've been gluten free since 2005. The first few weeks/months are tough. Everything seems weird and scary (don't underestimate the psychological effect of realizing that you've been poisoning yourself with your favorite foods for years - you kind of feel like the rug has been pulled out from under you when you get home from the doctor and realize that you can't eat anything in your cupboards).

There is a lot to learn, but since 2008 there has been mandatory labeling of the top 8 allergens (wheat is one of these) which makes things a lot easier.

In the last few years, many companies have been adding "gluten free" to their labels and information on their websites. When I first changed my diet, I remember standing in the grocery store aisle calling 800 numbers to find out what was in certain things that were confusingly labeled, but now it's much easier.

In general, my advice is to avoid most of the gf substitute foods. They are always very expensive and rarely as good as the real thing. One bread that I do like, when I eat bread, is Udi's. For the most part I just changed the way that I eat and don't do much bread, baked stuff or pasta anymore. The good news is that eventually your tastes will change, and you'll forget what "real" stuff tastes like, and the gf products that seemed hideous at first will start to seem pretty darn tasty.

Also, be prepared for some weird moments down the road when the reality that this is for forever sets in. Once time I almost burst into tears in the grocery store because there was a big Twinkie display and it hit me that I can never eat a Twinkie again. I don't even like Twinkies, but knowing that they are forever off limits to me was kind of a hard moment.

What a dope I am, lol! I corrected my mistake. Thank you for that because when I finalyl realized it myself I would have felt like a big @sshole :^)

Thank you for your very real, honest input. I think it's just hitting me this morning what a big deal this will be if I do have this. My first thought yesterday was "finally I may have some answers!" Now I'm nervous because this will change my entire way of living. Like you said with the Twinkies....I don't like them either but knowing that things like that are off limits and not just because I want to drop a few pounds is a little heavy to deal with right now. It's an odd feeling.

For me it was the nachos and churros at the hockey games(my 2 bad food indulgences). Never getting a real churro again was sad. In the "Gluten Free Bible" I recommended the author says you HAVE to go through a mourning period with your food. Don't let anyone tell you its silly or to just get over it, it's just food. It's a loss and a big permanent one at that. As she says "you have to mourn the loss of the food otherwise you will just end up being bitter towards spaghetti the rest of your life." On the bright side, it has gotten me out of eating some of my mother-in-law's and one of my coworker's "food" because they stink at reading labels and I just go "oh darn... there's gluten in this, sorry I can't have any of this" and walk away.

Bwhahahaha! That is hilarious! I'm definitely going to check out that book thanks!

Rock_Lobster · April 2012

JReeds9:
What a dope I am, lol! I corrected my mistake. Thank you for that because when I finalyl realized it myself I would have felt like a big @sshole :^)

No worries. I thought the same thing at first, too.

Good luck with your test results!

Anyone with Celiacs?

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