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Do My Symptoms Sound Familiar
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22 posts in this topic

Hey, I have some questions and thought I’d see if anyone here thought my story sounded familiar. Some background information I’m 24 male Caucasian 6’3” and overweight at about 280 (why can’t I have the weightloss symptoms heh). About 4 years ago or so in college I started having trouble that some times after eating out with my girlfriend I’d wind up getting sick (racing to the nearest bathroom on the 10 minute drive home from the restaurant even) shortly there after. At the time I attributed it to eating greasy foods and maybe gallbladder problems starting (family history of it, and in HS I ate way too much fast food). It didn’t happen all the time, but now and then. I tried to avoid greasy food a little bit more. Not a big deal but it started to cause me to be a little less social.

Now if we go back about a 1.5 years ago I was still having problems, but they started to get a little more frequent. I cut class for the day every couple weeks because I was feeling bad. Annoying for sure, definitely cut into my life, and I should have went to the doctor. What can I say, I figured it was something bad that would take a lot of invasive tests and I irrationally dismissed it and let it go and finished my degree.

Now being done with school I thought I’d enjoy myself a little, indulge my passions hobbies for a while, and work part time (read: no insurance). While I was off I was going to work on losing weight and cleaning up my diet more and wishfully hoping that would take care of it. That was last may. Now I’m not sure I could hold down a full time job with my problem. Just a month ago I decided to take a little trip to a town about an hour away for some shopping. I was half way there when all of a sudden I started getting stomach cramps and gas and the like. I stopped at 3 gas stations in the next 15 minutes and had (and I’m sure this is more than most of you want to know) terrible diarrhea. Feeling so bad I was thinking about driving to a hospital…if walking were an option at the time at least. Its pretty rare for it to be that bad though.

Usually I feel a little gassy, with some stomach cramps, and that feeling that there could be a BM any time. Sometimes they’re normal, sometimes a little fatty seeming, and sometimes all out diarrhea of what seems like impossible volume. Sometimes they’re just 3-4 small regular BM’s through the day and cramping all day. Headaches now and then, not all that often but more often that I'd think is usual. I also have a small (2" square) rash on my chest thats been there for about a year. Its itchy and I can't moisturize it away. I'm wondering if its Dermatitis herpetiformis. It doesn't seem pus filled or near as nasty as some of the pictures I've seen but it does seem to match celiac.

At first I thought gallbladder, but I don’t have any of the pain outside my stomach so I question that. I thought IBS-d so I tried more fiber, and fiber supplements, and then calcium supplements. No change. I tried going to a very low fat diet, nothing, small meals, nothing, ranitidine thinking maybe something ulcer like (despite not having bloody stools), nothing, and even dairy avoidance. All failed. I’m about to have to go to the doctor despite my fears of not having insurance at this time. It’s just become too crippling to my life. Car trips anywhere worry me to no end, social outings are unheard of, work is even too much some days, the gym is right out.

On days I go in to work I generally have a bowl of pinhead oats around lunch (1/4 cup uncooked). Some small snack mid day like an apple, a 6” subway sub for dinner. If I’m not working that it’s the same except for dinner I’ll usually have a grilled chicken breast, corn, fresh tomatoes, a small baked potato or green beans or something like that. No one food seems to be the trigger, which me wonder about gluten since it seems like in so many places. After lunch I’ll often get some mild cramping in the afternoon, and then it alternates, mild cramps one night, pretty bad and diarrhea the next night. I’m wondering if it is worth it to try a celiac type diet for a while, or if I’m just grasping at straws with my symptoms hoping I’ve found the answer and should just face the doctor and bills.

And if you read all that, thank you :)

cliff notes:

*sometimes gas, always cramping, sometimes diarrhea, sometimes fatty stool

*no pain like gallbladder

*fiber and calcium don't help

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my initial thoughts are yes it sounds like Celiac or at the very least a gluten intolerance... there are a lot of people here who have self diagnosed by trying the diet and having it work wonders for them. Since you don't have insurance, you might want to consider that route. If the diet helps you then you'd know you have to avoid gluten. What it wouldn't tell you is if it is def. celiac. For that you would need at the very least the Celiac panel of blood tests. Or the stool tests from Enterolab, the Enterolab tests you can order yourself and a lot of people are satisfied with the results. Then there are those that will insist that you will need to go through ALL the testing, bloodwork and biopsy while still consuming gluten, but if you are comfortable self diagnosing, I'd say try the diet. What have you got to lose?

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my initial thoughts are yes it sounds like Celiac or at the very least a gluten intolerance... there are a lot of people here who have self diagnosed by trying the diet and having it work wonders for them. Since you don't have insurance, you might want to consider that route.  If the diet helps you then you'd know you have to avoid gluten. What it wouldn't tell you is if it is def. celiac. For that you would need at the very least the Celiac panel of blood tests. Or the stool tests from Enterolab, the Enterolab tests you can order yourself and a lot of people are satisfied with the results.  Then there are those that will insist that you will need to go through ALL the testing, bloodwork and biopsy while still consuming gluten, but if you are comfortable self diagnosing, I'd say try the diet. What have you got to lose?

<{POST_SNAPBACK}>

I think I will be trying it. Something that I realized too is this is the same time span I discovered good beer and have progessed to making beer myself. I never drank in large volume but a glass a day or so wasn't uncommon (needless to say I havent been doing that lately). If it can get worse with cumulative exposure perhaps that is what is responsibe for my problem going from an irregular annoyance, to nearly daily. I'll look into enterolab too, thanks.

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there are websites for making homemade beer gluten free if you feel so inclined! Also there are a few companies starting to make gluten free beer too.

Good luck with it all, the diet itself is a little tricky at first, but once you get the hang of it, it's not so bad.

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So from my reading it seems like celiac might start to show symptoms at any age, there is no one common age range where it appears. Do most people start with symptoms here and there of increasing severity over a couple years, or is it like a one week and your life is different thing for most?

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I've heard all sorts of examples of how C.D. made itself known. Some are very gradual examples, some are devastating presentations of C.D. My own son was sick for years in a way that took a long, slow toll on him. Three years of that and then out of the blue, he just dropped the pounds, began grabbing his legs in mortal agony, loose stools 24/7, glazed expression, mouth hanging open drooling. It was awful. I thought he was going to die. Actually, I'm sure he was going to die if they didn't figure out what was going on. Some people don't have the gene "activated" until some stressor triggers it, and then they go into full Celiac symptoms. Others have silent celiac which causes the villi damage, but no overt symptoms that they really notice. There's all kinds of celiac out there. I've read there are 200 symptoms that can be attributed to celiac and lots of those symptoms look like other problems. Drs end up treating the symptoms of C.D. while not realizing C.D. is causing the problems.

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So from my reading it seems like celiac might start to show symptoms at any age, there is no one common age range where it appears.  Do most people start with symptoms here and there of increasing severity over a couple years, or is it like a one week and your life is different thing for most?

<{POST_SNAPBACK}>

Correct. Symptoms can present themselves at any age, as could celiac. In fact, one could have celiac all their life with no symptoms, and then all of a sudden get terrible symptoms. Symptoms can escalate at any time, and can often become milder--sometimes for no reason, sometimes at the onset of puberty...that, obviously, won't apply for you.

Celiac is extremely common--present in about 1% of the US population. Having related symptoms makes you even more likely. I think you should definitely investigate it--blood tests might be expensive w/o insurance--there's Enterolab, of course--just be forewarned that a lot of doctors won't accept Enterolab--not nearly as often as we do. You nailed two of the common symptoms: the stomach pains/cramping and the various stool problems. I think that warrants investigation of some kind.

Of course, there's a third option. If you would be willing to follow a gluten-free diet if it helped you, you don't even need testing. Many on the board had negative results or never got tested at all, but they tried the diet and all the symptoms are gone--I can tell you that a lot of people here feel better than they ever have...you could just try the diet--give it a few months of being sure that you're gluten-free and then if you start to feel better, continue--you might even get drastic results in the first few months--everyone reacts at a different speed. The question to ask yourself if choosing this route is this: if I have positive results to this dietary change, am I willing to make a strict lifelong commitment to it?

Good luck and welcome to the board...

-celiac3270

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Hi John

I'm a newbie to celiac disease and what you've gone through is exactly like me.....trying all sorts of diets and theories. Even though I did tons of research on my diarrhea and other symptoms, I never thought of celiac disease. I'm 32 and my health probs started at 22 during a pretty stressful time. It was all very gradual....

On the gluten-free diet my bowel habits have never ever been so normal :D . I would urge you to give it a try. If nothing else, to rule it out. Just be very, very strict while doing the trial. It doesn't seem we can fool or overrule over bodies on this one.....but the results can be GREAT :D

Misa

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yes it can present in different ways in different people. In my case, I had been ill all of my life with stomach problems and a weak immune system, seemed like every virus that came around, I caught it. My Dr.s for years told my mom there was nothing wrong with me physically (that they could find) and so they told her it must be all in my head and labeled me a hypochondriac :angry:

anyway... I tried the gluten-free diet on my own about 4 years before my actual dx, and it did help, but I wasn't completely gluten-free... didn't have the support network to really do this. I also let my OB/GYN talk me out of it saying that it was bad for my baby :blink: (I was 3 months pg at the time). After the birth of my daughter, my symptoms spiraled out of control and I just kept getting sicker and sicker over a period of about 3 years before my Dr. finally sent me to a GI doc that dx me. As soon as I started the gluten-free diet (this time completely gluten-free or as much as possible) I started feeling better quite quickly... I still had bad days and good days, and it took some time before I felt somewhat "normal"... but over 2 years into this, I think I'm getting the hang of it.

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I discovered my gluten intolerance when I tried the Atkins diet. My life was a mess and I was very overweight. I began to see an improvement right away but it was a good year before I could say I was healthy. I was 36 at the time. I have since lost 85 pounds and am healthier at 37 than I was at 17. For me the problem was there right from the start and became unbearable in my 30's. For me chronic fatigue, brain fog and weight gain were my problems. I did not have too many GI problems like D or C.

I have never been tested because I didn't know what I had. Once I found out there were test for this I had been gluten free for too long to get an accurate result. I won't get tested because I refuse to eat gluten for any reason whatsoever.

My life has been so much better since going gluten-free.

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I know how you feel when you say that you were afraid to go anywhere social. My first year of college I spent many days in the bathroom. Then it became embarrasing when people would ask me why I sit inside every day. After about 50 bottles of pepto. just to get myself through class I started to realize there was something really wrong...however I didn't go to the doctor. I HATE DOCTORS! Anyways the symptoms actually got a little better until about 3 months ago, then I had the BM and about a million other symptoms. When they told me there was a possibility of celiac disease I laughed. I mean I ate wheat more now because I was a vegitarian then I did when my BM were really bad. Well what did I know, 3 months later and I am living gluten-free. On a personal note to show you that you can go out without worrying where a bathroom is located, I havent had a bad BM in about a month. It is a hard diet and somedays I feel like giving up..then I think about how I use to live, scared to even leave my apartment. Its worth cutting out wheat! Its worth gaining your life back!

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I know exactly where you're coming from. My senior year of high school when I rode the bus, I would try to go to sleep thinking I wouldn't have to deal with bathroom anxiety on the way to school (lived out of town so took awhile to get to school). Also, kept one of those giant bottles of Pepto in my locker which I had to hit every day after lunch. (That was before zero tolerance policy of no medication in school lockers.) Had some problems in college too. Often took great mental and physical stamina to make it to the bathroom! ;)

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Hi, John, I'm new to this too, and have been gluten-free only for a week now and boy what a difference! I'm trying the dietary challenge because I don't want to incur the time and costs of all the testing that would need to be done, and this costs me nothing but tells me what I need to know.

Looking back now, I think I've always had problems with this but didn't relate it to glutens. I've always had stomach problems--indigestion, gallbladder removed 15 years ago, gas, cramping, and diarrhea. They got into full swing recently, I believe, from the physical trauma of pneumonia. I'm 40, and just have lived with it all this long until it became unbearable.

Why not try the gluten elimination from the diet, if you don't wish to get tested due to cost? However, if you do want to test, the others say you need to keep eating gluten to get a more valid result.

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Hi,

My celiac problems started with a bang seemingly out of the blue when I was 19, just before senior yr of college. I missed the first few weeks of that year, and only took 2 classes each semester, and it was a super struggle just to get to class.

Looking back (which I just did recently), there were probably small signs of celiac all the way growing up. Nothing obvious. Multiple ear infections as a kid. Never having good core stomach strength (for things like sit-ups) and never gaining muscle even though I did a ton of sports and worked out.

Growing up, my mom was undiagnosed celiac (light symtoms) always changing her diet, and always staying away from lots of wheat. Plus she had grown up in the Carribean where they eat a lot of rice anyways. So altough we ate some wheat most days, we did not eat lots of it. And almost never at dinner.

When I was in jr high, we started to vacation in England once a year. Every time, I would get sick. Not super-sick. Just kind of nauseus and unwell. I always thought it was the change in water, which I drank lots of. Well, duh, in England we ate big English breakfasts (can you say lots of TOAST), lunches at fancy restaurants (can you say ROLLS) and quick dinners (FRIED British food - yuck!). It was lots and lots of wheat, WAY more than I ate at home.

During the TWELVE years I went undiagnosed (from 19-31) I grew to hate restaurants (always nauseus), have tremendous anxiety going out, and generally accomplish very little in my life because I had to lie around so much. Times when I had a full-time job, every ounce of energy was expended towards it. I was baffled by how other 20-somethings could go out at night, or take an evening class, or do ANYTHING else.

I'm not sure why I'm telling you all this, lol, except to say I think i understand where you're coming from and where you're at. Try the diet. Try the test (I think it's worth the expense - and since you have to pay for it yourself, it won't be on any insurance record :) ) Just decide which you want first. A firm diagnosis is very easy to get now. If you go gluten-free, feel better, and then want the diagnosis, you will have to make yourself very very sick by eating lots of gluten before the test - something very few people are really willing to do.

Good luck with your decision,

Merika

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Hey, I have some questions and thought I’d see if anyone here thought my story sounded familiar.  Some background information I’m 24 male Caucasian 6’3” and overweight at about 280 (why can’t I have the weightloss symptoms heh).  About 4 years ago or so in college I started having trouble that some times after eating out with my girlfriend I’d wind up getting sick (racing to the nearest bathroom on the 10 minute drive home from the restaurant even) shortly there after.  At the time I attributed it to eating greasy foods and maybe gallbladder problems starting (family history of it, and in HS I ate way too much fast food).  It didn’t happen all the time, but now and then.  I tried to avoid greasy food a little bit more.  Not a big deal but it started to cause me to be a little less social.

Now if we go back about a 1.5 years ago I was still having problems, but they started to get a little more frequent.  I cut class for the day every couple weeks because I was feeling bad.  Annoying for sure, definitely cut into my life, and I should have went to the doctor.  What can I say, I figured it was something bad that would take a lot of invasive tests and I irrationally dismissed it and let it go and finished my degree.

Now being done with school I thought I’d enjoy myself a little, indulge my passions hobbies for a while, and work part time (read: no insurance).  While I was off I was going to work on losing weight and cleaning up my diet more and wishfully hoping that would take care of it.  That was last may.  Now I’m not sure I could hold down a full time job with my problem.  Just a month ago I decided to take a little trip to a town about an hour away for some shopping.  I was half way there when all of a sudden I started getting stomach cramps and gas and the like.  I stopped at 3 gas stations in the next 15 minutes and had (and I’m sure this is more than most of you want to know) terrible diarrhea.  Feeling so bad I was thinking about driving to a hospital…if walking were an option at the time at least.  Its pretty rare for it to be that bad though.

Usually I feel a little gassy, with some stomach cramps, and that feeling that there could be a BM any time.  Sometimes they’re normal, sometimes a little fatty seeming, and sometimes all out diarrhea of what seems like impossible volume.  Sometimes they’re just 3-4 small regular BM’s through the day and cramping all day.  Headaches now and then, not all that often but more often that I'd think is usual.  I also have a small (2" square) rash on my chest thats been there for about a year.  Its itchy and I can't moisturize it away.  I'm wondering if its Dermatitis herpetiformis.  It doesn't seem pus filled or near as nasty as some of the pictures I've seen but it does seem to match celiac.

At first I thought gallbladder, but I don’t have any of the pain outside my stomach so I question that.  I thought IBS-d so I tried more fiber, and fiber supplements, and then calcium supplements.  No change.  I tried going to a very low fat diet, nothing, small meals, nothing, ranitidine thinking maybe something ulcer like (despite not having bloody stools), nothing, and even dairy avoidance.  All failed.  I’m about to have to go to the doctor despite my fears of not having insurance at this time.  It’s just become too crippling to my life.  Car trips anywhere worry me to no end, social outings are unheard of, work is even too much some days, the gym is right out. 

On days I go in to work I generally have a bowl of pinhead oats around lunch (1/4 cup uncooked).  Some small snack mid day like an apple, a 6” subway sub for dinner.  If I’m not working that it’s the same except for dinner I’ll usually have a grilled chicken breast, corn, fresh tomatoes, a small baked potato or green beans or something like that.  No one food seems to be the trigger, which me wonder about gluten since it seems like in so many places.  After lunch I’ll often get some mild cramping in the afternoon, and then it alternates, mild cramps one night, pretty bad and diarrhea the next night.  I’m wondering if it is worth it to try a celiac type diet for a while, or if I’m just grasping at straws with my symptoms hoping I’ve found the answer and should just face the doctor and bills.

And if you read all that, thank you :)

cliff notes:

*sometimes gas, always cramping, sometimes diarrhea, sometimes fatty stool

*no pain like gallbladder

*fiber and calcium don't help

<{POST_SNAPBACK}>

Bite the bullet and get tested so you know for sure. That way you can get on with your life. Your symptoms are bad. I noticed that you have oats for lunch (bad unless they are pure, which is difficult to get in the U.S. and Canada) and a Subway sandwhich (bread again.) BUT, do NOT switch to a gluten-free diet before you are tested.

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Hey John,

It definately sounds like celiac. And like you said, your recent spike in symptoms can very easily be related to the beer, which has a lot of gluten in it. Luckily I was diagnosed when I was 18 and didn't drink in high school, so I never acquired the taste for beer. But I have tried the Ramapo gluten free beer and think it's pretty good. Before I was diagnosed I would sometimes share your experience of feeling very ill on the drive home, especially when we'd eat a Jason's Deli. It was the WORST. There is gluten all over that damn restaurant.

My advice to you would be to do a little basic research, try the diet for a few days to see if you feel better, and NOT see a doctor about it. When I initially went gluten free, my diahrea stopped completely within less than a week. Before the diet I would probably get diahrea once or twice a week. I say to do this for a few reasons. Doctor visits/bills are never fun. There is nothing the doctor can do to help you. All a doctor would do is diagnose you since no magical drugs are required, only a diet. My final point is that you mentioned you have no insurance. If you have a positive diagnosis of celiac in your medical file, getting health insurance will be much more difficult and/or expensive. My dad cancelled our health insurance to try to get a lower rate with another company (which was an idiotic thing to do) and they saw I had "Celiac Disease," got scared, and declined me. Even though studies have shown celiacs on the diet are healthier and live an average of 5 years longer than the normal population. Insurance companies don't know sh*t. But unfortunately thats the world we live in. To tell you the truth, I've been thinking about going back to the doctor, getting tested again (since I've been gluten free), and the test should come back negative. Then maybe the insurance companies will think I don't have it anymore and will accept me! Anyway, my point is that there is no benefit in getting a positive diagnosis, except piece of mind. But, if you're feeling a lot better that should be all the piece of mind you need. After I was diagnosed, my mom did some research and thought "wow, this sounds like something I might have too." So she started the diet and noticed she was feeling better. She had mild symptoms like irritability, occasional diahrea, tingling sensation in the legs, etc. So she is self diagnosed and has been gluten free ever since. And trust me, the diet is NOT hard. It just takes some getting used to. But it is definately worth it. Hope this helps.

Lee

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Thanks Lee for the message and everyone else!

As an update I've been pretty much gluten free since I posted, and pretty much better. A few times I've slipped off the wagon and paid the price. I was having a bad day and ordered a pizza from my favorite local pizza shop (until this I'd get one every friday, my favorite thing). There was a violent revolution 24 hours later and the lesson learned.

I have to try mixing up some various gluten-free AP flours. I miss baking breads and things. I bought some premade rice bread that had a packet of dessicant in it and an expiration date about 1 year in the future. It should be ashamed to call itself bread, sand would be moister. I've grown accustomed to eating rice cakes for snacks, and I've consumed more rice in the past few weeks than in my whole life. But on the whole I feel much better if I watch my diet.

I had a small rash on my chest that has started to fade (despite a new one occuring on my upper leg). I now believe its dermatitis herpetiformis and hopefully it will clear up soon. To my understanding thats linked with celiac only and not gluten intolerance so at this point I don't see the need to get an official diagnosis. I really miss gluten products and I don't think its an easy change, but its worth it so far. For a beer snob, baker, and general foodie its quite a change hehe. Thanks for all your suggestions and advice!

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good for you... just keep experimenting with baking with gluten-free flours. Some of your results may not be edible, but eventually you will find baking to be fun again. I've found that I like baking with mixes from The Gluten Free Pantry, Pamela's, 1-2-3 Gluten Free, Chebe, and Kinnikinick. Most of those you can order online. (or all of them!) I love the 1-2-3 Gluten Free Southern Glory Biscuits. When I make them up and then freeze them, pop them in the microwave to reheat and WOW! Just like momma used to make!

I've also noticed that there are more and more companies making gluten-free beer. Maybe you can get your local stores to get some in for you so that you don't have to give up your passion for beer. Also do some research into gluten-free home brewing, that could be a fun interesting outlet for you as well.

I remember eating TONS of rice the first few months of being gluten-free, Eventually you will find many other things you can eat and you won't feel so limited in your diet. Good luck!

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My symptoms - very similar to yours, John, although yours seem severe- didn't show up until about age 27...(a very stressful time for me)...and then progressively worsened until my diagnosis 3 years later...

Sounds like gluten-free has helped you quite a bit...stick to it! Although tempted to cheat (often)...I have not intentionally ingested gluten in several months and I'm slowly regaining energy, etc....

Social situations can be uncomfortable - they often revolve around eating, don't they? Outback Steakhouse has a gluten-free menu available, it's an easy stress-free evening out or date, when you can have a good meal and not worry about your condition - or locating the restrooms as soon as you walk in the door just in case.

My only suggestion, if you are trying to limit your doctor bills, would be this: if you are having success on the diet, stay on it. No official diagnosis is going to change that, BUT if you have had these problems over such an extended period of time, you are probably lacking in some essential vitamins --- maybe just some blood work on vitamin levels (zinc, Vit A, Vit B12, Vit D) would be a good idea. I just found out my B12 is LOW LOW LOW, and I'm on weekly B12 shots to build myself back up (Hate needles, too :angry: )........

Good luck~

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Hey John,

I'm glad to hear that you're feeling a lot better! I know it must be difficult at first, but it does get easier as time goes by. Since being diagnosed I've discovered that I don't react well to other foods like milk, soy, eggs, and yeast. So I try to avoid those as well.

Like Amybeth said, Outback has a gluten free menu in the restaraunt, you just have to ask for it. PF Changs also has a gluten free menu as well as Caraba's, Z Tejas, and Pei Wei. Amy's has started making a gluten free frozen pizza with a rice crust. I've had it a couple of times and it's actually quite good! It comes in plain cheese, but you could probably add your own extra toppings if you'd like. Kinnick kinnick also sells gluten free pizza crusts, as well as many other products, that are really good so you can make you're own pizza.

Stick with it. I know the diet is difficult to handle at first, but it's definately worth feeling better right?

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http://www.kinnikinnick.com/

http://www.chebe.com/

You can get good pizza crusts from kinnikinnick... also great breads, bagels, donuts...

Chebe is great for pizza sticks, add chopped pepperoni, mozzerella and extra garlic salt.... hot pockets, stuff with whatever, corn dogs, wrap dough around dog, roll till smooth, bake. Buttered rolls for stews...

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