Does anyone here have Celiac disease?

[brioche]

So, I've tested positive on the blood test for Celiac disease. Since I have the symptoms the chances of a false positive are really low. That and the antibodies must have been really high, because it's normally a 30-day turnaround and they called in twelve.
I'm having the endo to confirm it in March.

I know gracie has Crohn's, I think, and there was some discussion once about gluten free foods, I think, but I wasn't paying attention because I didn't have a problem then.

This totally hit me from left field. I was having the test to prove to them it wasn't Celiac, so this has been a bit of a shock. As has the food. I miss bread. Soft, chewy bread that doesn't have to be toasted to be palatable...

Anyone have anything for me? Tips, tricks, whatever?

And don't even get me started on paying 8 bucks for a fucking loaf of gluten-free bread...the only consolation is that I can claim the difference between normal food and GF food on my taxes. Nice return I'll be getting next year!

I know I haven't been posting much, but I've been around, on and off.

 

[TheLM]

So, I've tested positive on the blood test for Celiac disease. Since I have the symptoms the chances of a false positive are really low. That and the antibodies must have been really high, because it's normally a 30-day turnaround and they called in twelve.
I'm having the endo to confirm it in March.

I know gracie has Crohn's, I think, and there was some discussion once about gluten free foods, I think, but I wasn't paying attention because I didn't have a problem then.

This totally hit me from left field. I was having the test to prove to them it wasn't Celiac, so this has been a bit of a shock. As has the food. I miss bread. Soft, chewy bread that doesn't have to be toasted to be palatable...

Anyone have anything for me? Tips, tricks, whatever?

And don't even get me started on paying 8 bucks for a fucking loaf of gluten-free bread...the only consolation is that I can claim the difference between normal food and GF food on my taxes. Nice return I'll be getting next year!

I know I haven't been posting much, but I've been around, on and off.

Saw this post and just wanted to comment...

Celiac disease and others like it are something very interesting to me professionally, and I hope to see more definitive treatments for them in my career. I know getting a diagnosis like that is a kick in the face, but you aren't alone and management is possible.

I don't have enough experience to give any advice, I just wanted to try to wish you the best...

GI issues don't get the press of AIDs or cancer, but I know firsthand how life altering they can be.

 

[graceanne]

As stated I have crohns disease. I've done quite a bit of research regarding celiac, though, because celiac is routinely misdiagnosed as crohns disease (very similar symptoms). Just as an fyi - most crohnies are gluten intolerant.

As you probably know, celiac is just an allergy to gluten, which is found in wheat and oatmeal. I say 'just' like it's something easy to cut out of your diet ... yeah, right. Nonetheless, if you can cut out gluten, you'll start feeling a lot better. The issue you're going to run into is that some people use gluten as a sweetener in foods and medicines (like antibiotics) so you're gonna have to start reading labels like a fiend.

I would check out Pamela's gluten free bread mix. I made it for me and my younger daughter (who's also gluten intolerant) and everyone else in the house ate it, which tells you how good it is. I know that netzach, who told me about it, makes it into bisquits.

Also, learn some great rice recipes. Rice is gluten free.

 

[bhndblueyes88]

Also, learn some great rice recipes. Rice is gluten free.

There's a good number of grains/similar out there that are gluten free, really. There's some that are easily found like corn, potatoes, rice and tapioca. Then there's buckwheat, millet, pure-oats, quinoa, sorghum, taro root and amaranth.

The trouble just becomes, of course, changing one's cooking methods and FINDING these things since we have such a wheat-based food system.

I don't have a gluten intolerance, but I like to experiment. I like to make hot cereal using buckwheat groats. Quinoa can be used in a lot of ways (it's pretty easily substituted for rice or couscous).

Poke around online for recipes. There's a LOT out there

 

[Anjasa]

If you bake with GF flour, you'll need to add more 'wet' stuff to make it taste good, I found. With my waffles I had to put in 1 egg + 1 egg white + 1/2 banana where as before I just put in 1 egg.

http://www.hodgsonmill.com/about-hodgson-mill/recent-news/gluten-free-mixes/ has the BEST brownies. Ever. Seriously, I prefer these over regular brownies.

Kinnikinnick is good for bread. I like their Tapioca Rice Bread.

The biggest bitch about GF eating those is definitely the price. If you used to eat a lot of pasta and breads, you'll pretty much double your food cost :\

 

[brioche]

I've learned that it's not an allergy per se, though one reacts to it like many food allergies do as far as GI symptoms. It's actually an autoimmune thing, because when gluten gets into a Celiac person's small intestine the body reacts by attacking itself - the little villi that absorb nutrients and vitamins and minerals and produce lactase so you can digest milk.
I had a bone density scan done a few months ago due to a totally unrelated thing, and in was normal, so for the most part I've been absorbing things fine (except iron), and it's just adjusting to this totally new diet now.
Like I wanted hot dogs today, and I knew the buns were off limits, but there was wheat gluten in the the hot dogs themselves. I didn't buy them, someone else did.
I'm starting to cope on a small scale - I've found a few frozen dinners I like to eat, I found a cracker made entirely of parmesan cheese that I like, I know where to get gluten free cheesies and a brand of cookie that doesn't taste like crap. I actually found white bread by O'Dough's that I like and a cheese bread by Il Peto. I make brown rice pasta and sauce, too. Coming to terms with never having truly fluffy bread ever again is hard. I was a carb person. But I really do feel that on the large scale, the big changes I should make - I'm not doing them because I don't really know what they are. You get a phone call from your doctor saying "don't eat gluten." And that's all the advice you get.

I'm sorry if this sounds like whining. I'm not whining, I'm frustrated.

 

[graceanne]

I've learned that it's not an allergy per se, though one reacts to it like many food allergies do as far as GI symptoms. It's actually an autoimmune thing, because when gluten gets into a Celiac person's small intestine the body reacts by attacking itself - the little villi that absorb nutrients and vitamins and minerals and produce lactase so you can digest milk.
I had a bone density scan done a few months ago due to a totally unrelated thing, and in was normal, so for the most part I've been absorbing things fine (except iron), and it's just adjusting to this totally new diet now.
Like I wanted hot dogs today, and I knew the buns were off limits, but there was wheat gluten in the the hot dogs themselves. I didn't buy them, someone else did.
I'm starting to cope on a small scale - I've found a few frozen dinners I like to eat, I found a cracker made entirely of parmesan cheese that I like, I know where to get gluten free cheesies and a brand of cookie that doesn't taste like crap. I actually found white bread by O'Dough's that I like and a cheese bread by Il Peto. I make brown rice pasta and sauce, too. Coming to terms with never having truly fluffy bread ever again is hard. I was a carb person. But I really do feel that on the large scale, the big changes I should make - I'm not doing them because I don't really know what they are. You get a phone call from your doctor saying "don't eat gluten." And that's all the advice you get.

I'm sorry if this sounds like whining. I'm not whining, I'm frustrated.

It doesn't sound like you're whining, don't worry. This is a huge thing, and anyone who doesn't think it is should try and cut gluten out of their diets. Gluten is a HUGE part of the standard american diet (SAD), it's almost as bad as corn syrup in how they put it in everything!

As an FYI, when you're out and about, Jack in the Box has unbreaded, grilled chicken strips you can order, for those days when you're in a hurry. I'm not sure about the seasoning they use, but they cook everything fresh, so you could ask and if necessary have it cooked without. You can also get a salad with grilled, unbreaded, chicken strips on it at McDonalds, but their salad dressing does have gluten, so you'd have to bring your own.

I'd suggest you start making your own salad dressing. You can buy ranch in those little seasoning packets and make it yourself - in that way it doesn't have any gluten, but if you buy it premade it does have gluten. The issue with ranch is has to be refrigerated. You can make your own Italian salad dressing (recipe), which isn't supposed to be refrigerated, unless you like it solid. Keep it in a spill proof container and you it'll up your ability to eat out. Also, I substitute the red cider vinegar for balsamic vinegar - i think it makes it taste better.

 

[rosco rathbone]

Does anyone here NOT have it is more like it.

 

[intothewoods]

There are a ton of gluten free recipes online these days -- Gluten Free Girl is just one popular recipe blog. Lots of options these days.

 

[brioche]

I've been running all over town trying to locate this gluten free shepherd's pie that everyone stopped carrying at once. I finally asked at a smaller health-food store and they said they didn't carry it because it didn't sell, but they would order it in for me whenever I wanted. So I ordered 6. It's one of the few entrées that doesn't use rice and is lower calorie. My father, who says he doesn't want me to descend into despair, usually cooks a dinner for me. I am probably eating 3 times the vegetables I was before (primarily because I get home so late there's already a plate made up and I eat that). Fruit was never a problem. Now if I can just lessen my dependency on rice I'll be OK...because it's autoimmune, there have actually been cases where someone has basically eaten rice rice rice and their system has become intolerant of that too.
And I bought some gluten free hot dog buns and hot dogs for the weekend.
I was gaining gaining gaining for the past six weeks or so and now I've lost 5.7 pounds in one week. I don't know what to make of that, since my eating hasn't changed, unless it was an inflammation thing, since I did get glutened a few times. I joined Weight Watchers, lost some weight, spent the next six weeks gaining it back, and then lost it all again in one week.
My body doesn't make sense anymore.

 

[bhndblueyes88]

I've been running all over town trying to locate this gluten free shepherd's pie that everyone stopped carrying at once. I finally asked at a smaller health-food store and they said they didn't carry it because it didn't sell, but they would order it in for me whenever I wanted. So I ordered 6. It's one of the few entrées that doesn't use rice and is lower calorie. My father, who says he doesn't want me to descend into despair, usually cooks a dinner for me. I am probably eating 3 times the vegetables I was before (primarily because I get home so late there's already a plate made up and I eat that). Fruit was never a problem. Now if I can just lessen my dependency on rice I'll be OK...because it's autoimmune, there have actually been cases where someone has basically eaten rice rice rice and their system has become intolerant of that too.
And I bought some gluten free hot dog buns and hot dogs for the weekend.
I was gaining gaining gaining for the past six weeks or so and now I've lost 5.7 pounds in one week. I don't know what to make of that, since my eating hasn't changed, unless it was an inflammation thing, since I did get glutened a few times. I joined Weight Watchers, lost some weight, spent the next six weeks gaining it back, and then lost it all again in one week.
My body doesn't make sense anymore.

I don't mean to sound like I'm squeaking like a broken record, but I really encourage you to try Quinoa out. It's prepared pretty much identical to rice, but tastes differently and has a lot more protein in it. It might be a nice change up for you And most major groceries carry it these days.

 

[rosco rathbone]

There are a ton of gluten free recipes online these days -- Gluten Free Girl is just one popular recipe blog. Lots of options these days.

I got your gluten right. here.

 

[intothewoods]

I got your gluten right. here.

Hawt.

Gluten is like a dirty word these days, and I do wonder about the evidence there. Obviously if you have a diagnosed allergy that's one thing, but I think most people should probably just rely less on grains and not eliminate them completely.

 

[bhndblueyes88]

Hawt.

Gluten is like a dirty word these days, and I do wonder about the evidence there. Obviously if you have a diagnosed allergy that's one thing, but I think most people should probably just rely less on grains and not eliminate them completely.

I think that whole complete grains are a damned handy thing to have in the diet. And the nutty flavor of something like a buckwheat groat is tasty! But yah...overly processed grains need to go, and people need to not eat bread like candy.

 

[gregor2001us]

perhaps this will help:

http://search.kingarthurflour.com/search.jsp?N=0&rt=p&Ntt=gluten+free&x=31&y=9

cheers!

 

[graceanne]

Hawt.

Gluten is like a dirty word these days, and I do wonder about the evidence there. Obviously if you have a diagnosed allergy that's one thing, but I think most people should probably just rely less on grains and not eliminate them completely.

I agree, actually. Gluten free is the new diet, and I figure it'll go out like any other fad diet because it only helps people who are actually gluten intolerant or allergic.

 

[brioche]

I don't mean to sound like I'm squeaking like a broken record, but I really encourage you to try Quinoa out. It's prepared pretty much identical to rice, but tastes differently and has a lot more protein in it. It might be a nice change up for you And most major groceries carry it these days.

I actually like quinoa. I prefer the red, I find it has a slightly nuttier flavour. I have purchased sone quinoa pasta and am going to give that a try as well, but it's good pretty much on its own, as long as you rinse it well enough or get pre-rinsed. .

 

[shanesinforit]

Australia

This site is a must for anyone with this condition, Sue is Australia's leading expert, if not one of the world's best.
She lectures around the world including in the US.
Check out her site and cook books.

http://shepherdworks.com.au/

 

[spooned_mango]

A couple of years ago my son wanted to get off of his ADHD medication. I had heard that ADHD can be triggered by food. Not an allergy, but an intolerance. We went on an elimination diet.

We found out wheat and corn triggered his ADHD. Especially corn! We did the gluten free and corn free diet for almost a year. He did not take medication any time while on the diet.

I finally had to put him back on the meds because of his dad; who felt it was more important to tell my son I was evil for putting him on the diet and making it so they couldn't go out to eat than supporting his child's health.

I did a lot of internet research, and this site was one of my favorites. I even started at the beginning and read the whole blog. There are many wonderful recipes, helpful tips, and links to resources.

http://glutenfreegirl.com/

I hope this helps!