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It's Starting To Get At Me


bartfull

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bartfull Rising Star

When I first started the diet, I think it was seven weeks ago, I was doing pretty good. I congratulated myself on getting this in the modern age of computers, where there is so much information, and in a day and age when food companies are starting to become more aware. When my Mom got it, there WAS no internet, and even most health professionals had never heard of Celiac.

It got quite a bit tougher when I found out I am very sensitive to corn. Gluten is a piece of cake compared to corn.

I just want a piece of bread that is edible! I fear that even the tiny amount of corn in baking powder is too much for me. I don't know how to cook, and although I have been trying, I am now certain that I hate to cook! There is nothing for me to eat! I live in a tiny town with VERY limited choices at the grocery store, and even the healthfood store.

I've been eating styrofoam, I mean ricecakes, instead of bread, but yesterday I decided to get some gluten free Rice Chex. I know some here have said they get a reaction to them, but I was becoming desperate. Well, I had a reaction. A few hours after eating them it started to feel like I had swallowed a rock. I became very fatigued, and this morning in the bathroom it was like the old days, before I started the diet. Now today, I am just plain tired, even though I slept last night.

I'm on the verge of tears. I love the fact that I normally feel so much better, but it's just so hard to find something to eat! I never really liked most veggies except CORN :angry: And I'm not even crazy about most fruit. I'm getting tired of rice and meat and nothing to go with them. I'm tired of never having anything to snack on. I'm tired of walking into the kitchen feeling clueless and discouraged.

I just want a cheeseburger and fries! I want a Peanut Buster Parfait from DQ. I want a DOUGHNUT!!! I want someone to take care of me!

That does it, Now I AM crying. Thanks for listening.

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cahill Collaborator

When I first started the diet, I think it was seven weeks ago, I was doing pretty good. I congratulated myself on getting this in the modern age of computers, where there is so much information, and in a day and age when food companies are starting to become more aware. When my Mom got it, there WAS no internet, and even most health professionals had never heard of Celiac.

It got quite a bit tougher when I found out I am very sensitive to corn. Gluten is a piece of cake compared to corn.

I just want a piece of bread that is edible! I fear that even the tiny amount of corn in baking powder is too much for me. I don't know how to cook, and although I have been trying, I am now certain that I hate to cook! There is nothing for me to eat! I live in a tiny town with VERY limited choices at the grocery store, and even the healthfood store.

I've been eating styrofoam, I mean ricecakes, instead of bread, but yesterday I decided to get some gluten free Rice Chex. I know some here have said they get a reaction to them, but I was becoming desperate. Well, I had a reaction. A few hours after eating them it started to feel like I had swallowed a rock. I became very fatigued, and this morning in the bathroom it was like the old days, before I started the diet. Now today, I am just plain tired, even though I slept last night.

I'm on the verge of tears. I love the fact that I normally feel so much better, but it's just so hard to find something to eat! I never really liked most veggies except CORN :angry: And I'm not even crazy about most fruit. I'm getting tired of rice and meat and nothing to go with them. I'm tired of never having anything to snack on. I'm tired of walking into the kitchen feeling clueless and discouraged.

I just want a cheeseburger and fries! I want a Peanut Buster Parfait from DQ. I want a DOUGHNUT!!! I want someone to take care of me!

That does it, Now I AM crying. Thanks for listening.

First of all a BIG ((((HUG)))) for you.

Secondly , hang in there it does get better.

At my sickest I was eating just ground lamb and white rice. It took and elimination diet and months for my gut to FINALLY start to heal a bit. I still have intolerances and allergys BUT I have been able to reintroduce Dairy and many other foods, some foods I can now tolerate if I rotate them in and out of my diet.

Third, and please take this the way I mean it,because I say this with much love and understanding,,,

Put your big girl pantys on and deal.

We all come here to vent and to ask for advice ,and we all find love and support.Cry and vent all you need to , we all understand that .We all have good days and bad days. We hope for and work hard to have more good days than bad.At the end of the day your the one making food choices and dealing with the repercussions of those choices.

And some days those repercussions suck.

Step back and take a deep breath, deal with it, understand it the best you can and move on. Dont get stuck in it.

You can do this :wub:

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cyberprof Enthusiast

Bartful, first off, please feel free to vent whenever you need to. Crying is a stress-reliever or so the researchers say. (((HUGS)))

My second thought was that it is really early for you. I think it takes at least 90 days to get used to just gluten avoidance and you've got corn too which makes it harder still.

Have you ever heard the story "Welcome to Holland"? (google it) It's about planning a trip to Italy, learning and fantasizing about Italy and instead the plane lands in Holland and there the traveler stays. It's a metaphor for parents who expect to have a non-disabled child and instead have one born with disabilities. Not to minimize the difficulties in raising a child with disabilities but there is some similarity with celiac disease. All our lives, we expect to be able to eat the same as everyone else and there is a bit of mourning but also a lot of coping and adjusting that needs to be done when you land in Gluten-free-ville instead of Wheat-ville. I mean, most people never even heard about celiac before diagnosis. If you'd asked me 10 years ago what was wrong with me, I never would have said food intolerance...ulcer, cancer, IBS, depression, RA, MS, leukemia all were possibilities - celiac not even a clue. It can be a shock. Getting used to it will take a while.

And have you gone to a celiac support group? Some are great and have events and food.

So hang in there, keep reading. Some people get away without cooking but the additional corn (or dairy or soy or nightshade) intolerance makes that 1000X harder. So, if you don't like to cook or don't want to learn, that will be harder. Cooking can be learned slowly, bit by bit as you get more familiar with where gluten hides. Are you in a larger city? Some celiacs are starting cooking schools or businesses that teach other celiacs how to shop, cook and eat safely.

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lilu Rookie

First off, big hugs! I am so sorry you've hit a wall.

One of the best resources I've found is glutenfreecookingschool.com, run by Mary Frances. Many of her recipes (including that for flour mixture) include substitutions to exclude corn.

I also highly recommend Jules Shephard's "The First Year" which is great and helpful book that literally walks you through step by step, and includes a lot of recipes, etc.

Also, on YouTube there is a video blog by CeliacDiva. One of the later episodes (I think in the 70s or 80s) focuses on dealing with the emotional process of being diagnosed and having to face major life changes. I thought it was pretty good info.

I hope all goes well for you. Health and hugs,

Lilu

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mamaw Community Regular

You will get through this..You just need to find what you can eat...Robin Ryberg has cookbooks . that have corn free recipes. And very popular.....There are several others that also have corn free. Google celiac & corn free & I'm sure you will bring up recipes...there are also mail order bakeries who do corn free...

Are you dairy free? Why can't you have a DQ? Dq's hot fudge, peanuts, & vanilla soft serve are all gluten-free... I don't know whats in the whipped cream so I don't get that...

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bartfull Rising Star

Thanks for all the kind words and hugs. I feel like such a baby. I have a friend right now who is dealing with his father dying. They have given him two weeks at the most. Now THAT is a problem worth crying about. But crying because I can't have a slice of bread? I should be ashamed of myself!

I live in the southern Black Hills of South Dakota. There are 3,600 people in my town, and two grocery stores that are tiny and don't carry much. The nearest town of any size is Rapid City. That is over 50 miles from here, and because I work seven days a week, I can't get there. I have never had a credit card in my life, so I can't buy on line. All I can do is ask anyone who is going to Rapid to pick something up for me, but how do I do that when I don't even know what they have? (Whine, whine, whine.)

There is one other lady in town who has gone "gluten free" so she says, but she cheats all the time and is only doing it because she read on the internet that gluten can cause problems. When she cheats, she has no reaction.

I'll check out some of the resources you kind folks have provided. I did find a corn allergy site and they list foods that are both gluten and corn free. I think there were about three items on the list, and they were all things I can't get here.

But - to cheer myself up today I had bacon. Bacon is one of the most univerally loved foods there is, and I can EAT it. :)

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cahill Collaborator

Thanks for all the kind words and hugs. I feel like such a baby. I have a friend right now who is dealing with his father dying. They have given him two weeks at the most. Now THAT is a problem worth crying about. But crying because I can't have a slice of bread? I should be ashamed of myself!

I live in the southern Black Hills of South Dakota. There are 3,600 people in my town, and two grocery stores that are tiny and don't carry much. The nearest town of any size is Rapid City. That is over 50 miles from here, and because I work seven days a week, I can't get there. I have never had a credit card in my life, so I can't buy on line. All I can do is ask anyone who is going to Rapid to pick something up for me, but how do I do that when I don't even know what they have? (Whine, whine, whine.)

There is one other lady in town who has gone "gluten free" so she says, but she cheats all the time and is only doing it because she read on the internet that gluten can cause problems. When she cheats, she has no reaction.

I'll check out some of the resources you kind folks have provided. I did find a corn allergy site and they list foods that are both gluten and corn free. I think there were about three items on the list, and they were all things I can't get here.

But - to cheer myself up today I had bacon. Bacon is one of the most univerally loved foods there is, and I can EAT it. :)

I believe you can use a debt card or a prepaid card on line thur paypal . If you would like more information about that I can ask my daughter, she does that stuff for me.

The black hill of South Dakota is on my bucket list of places I would love to visit,, beautiful country from what little I have seen.

Bacon, one of life's greatest joys :D

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organicmama Contributor

Yes, definitely get paypal and setup your bank account with Amazon. Amazon has great prices and it is easy to have things shipped to you, primarily free.

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bartfull Rising Star

I'll check into the paypal thing. Thanks.

And yes, the Black Hills is the most beautiful place I have ever been, and I have traveled a LOT. I've been to almost every state in the union, and I moved here seven years ago. (from Connecticut) There is absolutely nothing good to eat here, even for people who are not gluten free because although we grow the best beef in the country, they ship it all out, and in our little grocery stores here, all the meat comes from Mexico. The produce trucks get to the Southern Hills last so we get the dregs. Buy it today and use it immediately or it'll be starting to rot tomorrow.

It's been worth it to live here though. The most breathtaking scenery everywhere you look, wonderful people, great weather (our winters are MILD! In the seven years I have been here we only had one bad snowstorm - two feet, and it was gone in two days. Very often it gets up to the 60's during the day, even in the middle of January.)And the music scene is unbelievable. I opened my music store over five years ago and I'm still making a living - in THIS economy, in this tiny town!

See, just talking about my beautiful home has cheered me up too.

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Marilyn R Community Regular

Good luck to you!

If you get Paypal going, the easiest and most delicious recipes are in The gluten-free Almond Flour Cookbook. The author lists online sources for ingredients. They're a bit spendy though. (And worthwhile so far.) She doesn't use very many ingredients and I don't recall a recipe calling for corn. (I can't do corn either.)

Now I want to visit SD! Never been there...or to Utah.

:unsure:

Again, wish you well.

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cahill Collaborator

I'll check into the paypal thing. Thanks.

And yes, the Black Hills is the most beautiful place I have ever been, and I have traveled a LOT. I've been to almost every state in the union, and I moved here seven years ago. (from Connecticut) There is absolutely nothing good to eat here, even for people who are not gluten free because although we grow the best beef in the country, they ship it all out, and in our little grocery stores here, all the meat comes from Mexico. The produce trucks get to the Southern Hills last so we get the dregs. Buy it today and use it immediately or it'll be starting to rot tomorrow.

It's been worth it to live here though. The most breathtaking scenery everywhere you look, wonderful people, great weather (our winters are MILD! In the seven years I have been here we only had one bad snowstorm - two feet, and it was gone in two days. Very often it gets up to the 60's during the day, even in the middle of January.)And the music scene is unbelievable. I opened my music store over five years ago and I'm still making a living - in THIS economy, in this tiny town!

See, just talking about my beautiful home has cheered me up too.

This is an amazingly difficult journey that we are on. Finding joy and recognizing the everyday beauty in our lives makes that journey just a bit more tolerable.

ROAD TRIP to bartfull's :D

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lilu Rookie

And we can all bring him goodies from the gluten-free world!

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bartfull Rising Star

And we can all bring him goodies from the gluten-free world!

Her. Bart was my dog. When he would do something bad I'd call him "you poor Bartless thing", and when he would do something good, I'd call him such a beautiful Bartfull dog. I was going to use my name, but it was already taken so I just typed in the first thing that came to mind.

But yes, all of you are welcome to come visit me in the Hills, whether you bring food or not. As a matter of fact, I have tried a few times now to make a picture of the Hills my avitar, but it doesn't take. (I not only can't cook, but I'm lousy with computers.) But google "Needles Highway" or "Spearfish Canyon" to get an idea of what it looks like here.

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love2travel Mentor

Her. Bart was my dog. When he would do something bad I'd call him "you poor Bartless thing", and when he would do something good, I'd call him such a beautiful Bartfull dog. I was going to use my name, but it was already taken so I just typed in the first thing that came to mind.

But yes, all of you are welcome to come visit me in the Hills, whether you bring food or not. As a matter of fact, I have tried a few times now to make a picture of the Hills my avitar, but it doesn't take. (I not only can't cook, but I'm lousy with computers.) But google "Needles Highway" or "Spearfish Canyon" to get an idea of what it looks like here.

I've been to the area and it IS lovely! It is so great you live in an area you are in love with. I admit that our town is U G L Y ! ! ! The farm where I was raised is very pretty. But our place in Croatia is absolutely stunning. Cannot wait to move there. Some day!

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notme Experienced

i interpreted your s/n as 'be artful' :)

i have a friend who lives in rapid and even she complains/rejoices about availability of certain things. but she likes to cook wierd like i do lol (and she drinks alot of chai (?) i always thought she was saying 'chia' maybe made from the stuff that grows out of a chia pet) so she was overjoyed when a certain chain beverage company opened a drive thru near her home. are you close to where they have the motorcycle rally? i hear it is very beautiful up there :)

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bartfull Rising Star

Sturgis is about 60 or 65 miles from here, but the rally isn't just there. The entire Hills area is overrun with bikes from the second week of July until a week or so after the rally ends. Every town has bike events. Here in Hot Springs we have drag races and a poker run, plus all kinds of music events. It's fun, but bad for my business. For some reason these bikers don't seem to want to buy guitars. :lol: I tell them I will gladly ship, seeing it's hard to carry a guitar on the back of a motorcycle, but they just aren't here for guitars that week.

Tell your friend in Rapid to stop in at the music store in Hot Springs some time and we'll talk Celiac. Maybe I'll even sell her a guitar while she's here!

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Chama-tan Newbie

Oh, try not to feel too bad about feeling sorry for yourself!! //hugs

The best of us have to be allowed to do it sometimes, whether you're just changing your diet or you've been in it for years.

I'm not much of a cook, either. I'm alright at it, not great, but I really... don't enjoy cooking. I've also just found out (through experience, not tests) that I'm allergic to corn. I didn't eat much corn in the first place, so maybe I can help. :]

Just offhand, I have always had luck with most flavours of Imagine brand soups. I don't know where else they carry them, but I get them at Whole Foods. They come in a carton (like a lot of soy milks) and are also dairy free, or all the ones I've tried. The flavours I can eat are potato leek, tomato, butternut squash & mango, sweet potato and sweet pea. They're all made with sea salt, too, so no iodized salt with corn. If you like mushrooms, they have mushroom flavor too. (I love them, but I've been having to avoid anything fermented for awhile :[ )

Even if you're not a huge fan of veggies, look up any recipe for a soup called Ogwissimanabo. I swear it's delicious. Yellow squash and leeks, pure maple syrup, cucumber, delicioussss. I don't even LIKE leeks and I will eat this nonstop.

You can have eggs and bacon, right?? Learn to fry some eggs, or get yourself an egg poacher? :] You can microwave bacon, on a paper towel!

You can make yourself fruit salad, with some raw cane sugar sprinkled over the top! Try to avoid fruits with wax or pesticides... farmers markets are your best bet. I heard that pesticides and fruit/veggie waxes can and often do have corn in them. So, same with all veggies, too~

While I've never had a reaction that I'm aware of from al fresco chicken sausage, I'm not 100% sure it's corn free. I e-mailed them a day ago, so I'm just waiting. You can check it out yourself, if you want, though. I've only had the chicken apple kind, but it's amaaaazing and I just cook it in a frying pan for 2 - 3 minutes. Super lazy awesome meal with some corn-free/unenriched rice, or fried eggs, or anything really.

I hope this was a little helpful. I don't want to recommend too much more, because I'm re-editing all my foods one by one to make sure they're corn free. I don't want to suggest anything that could make you easily sick!!

Please don't despair~! It gets so much easier, and there ARE foods you can eat :] People ate a thousand years ago, before Spam and Doritos and everything else where even a thought! lol

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annegirl Explorer

Good luck to you!

If you get Paypal going, the easiest and most delicious recipes are in The gluten-free Almond Flour Cookbook. The author lists online sources for ingredients. They're a bit spendy though. (And worthwhile so far.) She doesn't use very many ingredients and I don't recall a recipe calling for corn. (I can't do corn either.)

Now I want to visit SD! Never been there...or to Utah.

:unsure:

Again, wish you well.

You're right, the recipes are corn free as well.

I'm sorry about your difficulties! :( It would be hard to deal with this and not enjoy cooking. I would suggest perhaps trying maybe a recipe a week and seeing if you can at least come to tolerate it.

I would hit up the local bank for a checking account with a debit card. That way you can order everything you need online! Lara bars, nuts, raisins, peanut butter....all these things are good on the run and both gluten-free/cf if you pay attention to labels. Try quinoa sometime instead of rice. It's very good and easy to prepare. I also try to vary my meats so I don't get bored. Be aware that some pork has corn products in it to make it tender. Baking powder is easy to "make" corn free. It's 1/3 baking soda to 2/3 cream of tartar.

Good luck!

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bartfull Rising Star

Thank you both for the suggestions! I know I can do this, and I feel like a jerk, whining like this. Last night I cried at the grocery store. I wanted some ice cream and everything they had had corn syrup except Breyers - but the only flavors they carry are vanilla and rocky road - I've heard their vanilla has gluten and the rocky road of course has corn syrup in the marshmallow. It is also $7.95 for a 1.75 quart container!! So I went and looked at their meager selection of Ben and Jerry's. The closest I could come to gluten-free/CF was the peanut butter cup - it said there MIGHT be CC in the PB cups. I bought it anyway. I'll probably be sick, but...

I'll catch on and stop feeling sorry for myself soon. I think what is getting to me is that when I first started it seemed easy. That was when I thought it was only gluten and I knew if I read the labels I could buy anything from Kraft or Con-Agra. I can tell you now though, that almost everything they make has corn in one form or another. :angry:

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Kimbalou Enthusiast

The Gluten free Bible is a great cookbook. I use corn tortillas to make sandwiches. Today, for the first time, I bought a box of gluten free bread mix by Glutino. It was on sale at Safeway for $1.83!! It tastes great! Very easy to make. In and Out Burger has great "protein style" burgers,w hich means they wrap the burger in a huge piece of lettuce instead of a bun. I just found out Carl's jr will do this too!

Don't worry, it gets easier. I'm not sure why you would have a reaction to gluten-free Rice chex...you shouldn't. I am very sensitive to gluten and have never had a reaction to Rice Chex. Is it milk? Try Almond milk, I switched to it and it was really easy. Maybe you have a problem with dairy too?

Don't worry, it's ok to come here and cry, I do it all the time. And we understand!!

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domesticactivist Collaborator

When we first went gluten-free we realized corn was a problem, too, and boy did it suck trying to eat gluten-free products and avoid corn.

Things got a lot easier when we cut out grains all together, gave up on bread entirely, and started the GAPS diet. It sounds weird, but the more restrictive diet meant we stopped trying to replace old foods and just got back to basics. Introducing one food at a time made it much easier to tell what effects different foods had on each of us.

Eating whole foods is actually a lot yummier and safer, once you get good sources for your food. I don't know if it is an option where you are, but we have had great luck buying farm-direct for most of our meats and produce. This way we really can find out where it comes from and how it has been processed and handled.

As for the emotional part - it doesn't matter what other people are going through or how they are handling their problems. This is a big deal, and you will have your own feelings about it. You are entitled to those feelings. Let yourself go through them. This too shall pass! (edit to add, the feelings will pass, not the diet)

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sa1937 Community Regular

Thank you both for the suggestions! I know I can do this, and I feel like a jerk, whining like this. Last night I cried at the grocery store. I wanted some ice cream and everything they had had corn syrup except Breyers - but the only flavors they carry are vanilla and rocky road - I've heard their vanilla has gluten and the rocky road of course has corn syrup in the marshmallow. It is also $7.95 for a 1.75 quart container!! So I went and looked at their meager selection of Ben and Jerry's. The closest I could come to gluten-free/CF was the peanut butter cup - it said there MIGHT be CC in the PB cups. I bought it anyway. I'll probably be sick, but...

I'll catch on and stop feeling sorry for myself soon. I think what is getting to me is that when I first started it seemed easy. That was when I thought it was only gluten and I knew if I read the labels I could buy anything from Kraft or Con-Agra. I can tell you now though, that almost everything they make has corn in one form or another. :angry:

It's okay to whine and cry...this diet is a huge adjustment for lots of people and with your corn intolerance, it makes it so much worse.

Now...on to the ice cream. I'm assuming you're in the U.S. I don't see any reason you can't have Breyers vanilla. Breyers is a Unilever company and they will not hide gluten in their products.

I just checked their Open Original Shared Link and the ingredients in their Natural Vanilla are Milk, Cream, Sugar, Natural Tara Gum, Natural Vanilla Flavor.

They also make a Lactose-Free Vanilla, which contains Milk, Sugar, Cream, Natural Flavor, Natural Tara Gum, Lactase Enzyme. * 99% Lactose Free.

Certainly read the label as it will be more up-to-date than the website. In my area I can buy Breyers at my local Wal-Mart. Grocery stores around here also promote Breyers on a Buy One, Get One Free special. I just can't bring myself to pay full price except at Wal-Mart, which is usually cheaper.

While Ben & Jerry's doesn't have a listing of gluten-free products as ingredients do change from time to time, some time ago I bought their to-die-for Cherry Garcia and it was gluten-free. Don't know if it contains corn though as I don't have any to check the label. And ingredients may have changed since I bought it.

Hopefully everything will get easier for you as you find new products to try!

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bartfull Rising Star

I could have sworn I read somewhere that Breyer's vanilla contained gluten, but I was wrong - it's corn. The "natural vanilla flavor" is processed with corn.

And I guess I got what I deserved - I ate the Ben and Jerry's a day and one half ago, and then had a second small dish last night. A few minutes ago I had to lock the door to the shop and put up a "back in ten minutes" sign while I went into the bathroom for a few minutes.

So, now I am assuming it takes me about a day and a half to react to gluten. And here I never had digestive problems from gluten before! I guess it's a good thing that I now have a way to tell if I've been glutened, but it sure doesn't feel like it!

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sa1937 Community Regular

Natural vanilla flavor is processed with corn? That's puzzling to me. Where did you read that?

What a bummer that you got sick from the Ben & Jerry's. Are you sure you can tolerate dairy? A lot of newly diagnosed celiacs have to avoid dairy products (specifically lactose) until they've healed.

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bartfull Rising Star

I've been spending a lot of time on corn allergy websites. Here's one where they discuss vanilla and corn: Open Original Shared Link

It's AMAZING how many foods have corn in them! I mentioned yesterday, even white rice is often coated with cornstarch, and many frozen veggies are coated with it too, to keep them from clumping together when frozen.

One funny thing occurred to me yesterday. Last year, I accidentally put ethanol in my older car. I had a HECK of a time getting it to start after that. It seems my CAR is allergic to corn too. :lol:

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      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
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