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curiousifcd

Don't Know What's Wrong With Me...

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Hi, I've been reading through this message board for the past two months or so (I had one post about a month ago). I could really use some input. Ever since Ive been in college (I'm a freshman, tho know that I think about it I did have some stomach problems when I was younger) I've been having a lot of stomach problems. My sister (IBS, pancreatis, possbily celiac or chron's among others- the doctor has told her to avoid wheat) and my dad (a lot of health problems, including szephrenia, diabetes, and possibly chron's disease) also had a lot of problems, and I started researching celiac. I seem to really fit the bill. I get constipated (tho i go like every other day, i just feel like i need to go more), my stomach extends, bad brain fog, nausea, lethargic, dizzy, and bad headaches. I got tested for celiacs in march (because of the family history, tho they bascially dismissed me as soon as i said constipation- they said celiacs get diarrhea) but they called and said I was negative for celiacs (i haven't seen the test results, i was thinking of gettin them faxed for future reference). The dr died say I prolly had IBS and wanted to monitor my heart (because i was having "palipations"-my sister had to have this done too) I dont really believe the IBS label- it seems like thats what dr's use when they dont know whats wrong with u. I started eating gluten-free a few weeks before that dr. visit, and felt a ton better so i kept at it. I figure maybe its just a wheat allergy or intollerance, or maybe a gluten intollerance but not celiac disease. Anyways, i felt a lot better going gluten-free, but its hard since I've had no diagnose. Twice I decided to "test" myself just to make sure I wasn't a hyprochrondriac, and twice ive paid for it. The first time I got woken up in the middle of the night with horrible cramps, diarhea, nausea, bad chills, dizzy, shaking and i almost past out on the bathroom floor. I ended up having flu like symtoms for the next few days. The second time I ended up having the same symptoms for almost 4 days, I couldn't eat anything and the little that I did would make my stomach rumble, give me diarhea, and i had bad "brain fog". By tuesday i was feeling better and went to class, but had to leave early because I almost passed out (i got really shakey, my vision became blurred) then i started having attacks where i couldnt breathe and my heart felt like it was racing rapidly. My mom made me go to urgent care because she was really scared (she could tell when the attacks were coming- id get really pale and lethargic) and ended up being hospitalized on friday when i went home (it was good friday) they werent sure what was wrong (they mainly checked for a blood clot, because they were scared i had one since i had knee surgery two weeks before) and sent me to the dr on monday, who ruled out asthma and put me on allergy medicine. it seems to work a lil (i still have attacks where i cant breathe, and i think the medicine makes me paranoid and i cant sleep). in the summer when i get home from school im scheduled for an allergy test. 9ive wanted to know what im allergic to, but after readin on here it seems i either have intollerances or sensitivies, not allergies, so i dont know what will show up).A week ago i had to leave class early again, but my hands got really shakey (it seems my sugar is messed up, and i have to eat something small every few hours. Two days before that when i was at the mall, i got really shakey and pale, after i hadnt eaten in about 7 pr 8 hours. I dont get hungry, i just know to eat when i started gettin shakey or dizzy) anyways, i was feeling a lot better until monday night. Im not sure if it was the popcorn i ate or the tuna fish (my stomach seems to get upset after these foods) but all yesterday my stomach rumbled after i ate, and i had diarhea and felt naseous and just plain sick (its still lasting today) i have been almost 100% gluten free (tho i have recently added in rice chex and cap n; crunch, since i saw they were wheat free..wishful thinking..) tho after i eat it my heart races and i get hot and my face gets red..so i have stop eating that. It seems like the only thing that works is a totally gluten free diet, which id be dedicated if i knew for sure i should be on it. Im worried im losing a lot of viatimins (should i take a multivitamin or drink ensure or something?) Also, it seems dairy is starting to botherin me (ive been havin 3-4 servings a day, it seemed like a safe bet since i couldnt eat a lot of other stuff- i really love yougrt and was having that at least once a day). I have also had to pee a lot lately and have been naseous and shakey. I'm kind of scared, espcecially since diabetes runs in my family (both grandmas and my dad had it). I just want to feel better- I was always the "healthy" (people call me a health nut- i eat mostly fruits and vegetables and not a lot processed foods) kid, and I'm scared to end up as sick as my sister or dad. People just think im always sick now, or think im making a big deal of what it is (my mom doesnt understand it really, tho she is concerned about me) My roomates are just like, youre sick again?! whats wrong? but its embarassing to describe it, so i just say i dont feel good. Any input that you have at all right now would be appreciated- I'm getting really frustrated with being sick!

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Hi Curious,

Your symptoms sound a lot like mine before I got diagnosed. I would feel like I was going to pass out, I was afraid to drive or go anywhere without my husband. I had to quit my job as a nurse because I was so sick. It is a very scary feeling. I went from one doctor to another. I would get sick after eating, got very pale, dizzy, rapid pulse and feeling shakey. My blood sugar was always normal. I had brain fog, itchy, burning eyes. I was being treated for environmental allergies. I suspected wheat but I tested NEG on the scratch test. My MD didn't test me for celiac, I was sl overweight and didn't have diarrhea. This went on for 2-3 years, got worse after thyroid surgery. I then developed GI symptoms, nausea, pain, cramping, bloating, and pain. Finally a new GP sent me to a gastro doc who at first diagnosed me with IBS but did a Celiac panel. My IgA was elevated. The rest as they say is history. I have been gluten-free/DF for 15 months, I feel a lot better. I recently tested positive on the York test for dairy, yeast, egg whites, corn and wheat. This has been a long tortuous path which robbed me of a lot of years but I'm glad it is mostly behind me. I know how you feel, keep learning and reading, I'm sure you will find your answers.

P.S. try to get a monitor to check your blood sugars at least 4 times a day. I had to do that because the rice flours I used to bake with made my blood sugar rise, I don't want to go on meds so I am exercising now and it has come down. There is a history of Diabetes in my family too and I know what i have to do. Celiac ,Thyroid, and Diabetes are all related, how did we get so lucky?? ;)

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Wow thanks for responding. Our stories do sound a lot alike. I never realized so many other disorders were connected to celiac disease until I started reading this message board. I have a family history of a lot of the connected ones- Both grandmas and dad had diabetes, my grandma died of lymphoma, some cousins have a peanut allergy and asthma, an aunt has hypothyroid, and almost all of my aunts (my mom has 6 sisters) have been label IBS. Do you use a blood sugar monitor? Are they expensive? Also, what do you have to do to get the York lab done? I seem to be intollerant or sensitive to other foods, like dairy, nuts, soy, and maybe even corn. Right now I'm to the point whre I have no idea what to eat. I was always kind of a "picky" eater and not the typical college kid (was a vegetarian for a year, up until a few months ago- only started adding in some meat when i realized that i was havin issues with wheat and the like) i dont eat fast food, processed foods,pop or anything with caffeine, or "junk" food. Now with the no gluten and maybe even dairy (tho im beginning to hope that maybe it was just the splenda in the lite yogurt, and that maybe I'd be fine with plain yogurt?)

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Most people who can't tolerate lactose can have yogurt. The reason is people who are lactose intolerant lack the lactase enzyme. Yogurt contains this enzyme which helps break down lactose. Yoplait yogurt is great and it has live cultures in it and those are yogurts to look for.

Lactose intolerance can come with celiac because of damage to villi. It does sound like your family has had things with strong connections with celiac. If you go to the york labs website you can order a test...they do 113 food testing or one with not so many. You can also get tested by having your doctor order blood tests for that.

It sounds like you should be tested though...and if you have it your whole family should be tested. Celiac is commonly misdiagnosed for IBS and things like that. Better to find out sooner then later.

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Hi Curious,

Glad to help, that's what we are here for. You will find a lot of people who know a lot more than I do. The monitor and strips came from a doctor's order. My insurance covered the strips but I had to pay about 60.00 for the meter. It is Ultra lite by lifescan. they later sent me a rebate check so it actually didn't cost a thing. I test 4 times a day. I really need to check before I drive because exercising will really drop it down.

I couldn't persuade my gastro doc to order a food intolerance test, told me I would have to see an allergist <_< . Yeh, right., I had been going to one for 20 years. I heard about York lab on this board, contacted them, it was kind of pricey but easy to do. I got my results in about 6 weeks. I don't know the URL, I found them by a Google search.

If I were you I would give up Dairy, most of us end up doing it anyway, it might give you a jump start. Try to stick to plain, unprocessed foods, avoid eating out for a while. I lived a whole summer on chicken, fish, potatoes, rice, veggies, and fruit.

It was boring but I did get better. My husband makes me tea biscuits with raisins

which seem to satisfy my sweet tooth. He makes it with sweet n low, and egg replacer. Let me know if you need any help...

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Thanks for replying! This is all so confusing, so any help is wonderful. I never knew how much went along with this, I'm suprised that not a lot of people know about it (and a lot of dr.'s dont seem to know about it either). I can deal with the bland diet, and it would prolly help right now. Im defiantely able to eat the same thing all the time, I guess I might need to add in a multivitamin too (on top of this, i think i border on being anemic) I was thinking of cutting out dairy for awhile (I saw a lot of people say they react to it for the first few months cuz of the flattened villi). Im just so used to eating "by the food pyramid" that it seems bad to cut out an entire group of food. But right now I just want to feel better! I did hear yogurt was easier to digest and the bacteria was good for you, does it seem like plain yogurt or yoplait would be ok? What does the York test entail? I don't want to be a hyprochrondriac (which is why its harder to talk to other people, glad theres a site like this!) but I know my body, and I know I get sick after eating certain foods. How do you explain it to people? I don't go out to eat hardly at all (I love to cook) but sometimes it comes up where I have to, how do you explain it to waiters and people you're eating with? I know i have to because its not worth being sick over, but it seems embarassing.

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A positve reaction to the dietary challenge IS a valid test. As for the diet, it need be neither bland, nor cause you to eliminate an entire food group. There are a lot of gluten-free grains that you can use. Of course, you could also argue that it's healthier to avoid the food pyramid. :-) (You can get plenty of fat/protein/carbs/fiber without eating much in the way of grains - vegetables are a better source for carbs and fiber most of the time, IM(oh so)HO. :-D)

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Yeah I know the food pyramid isn't exactly accurate ( I was a nutrition minor for a little bit, and even did a report on how bad it was..ironic..) I definately eat my fair share of fruits and veggies (my family always jokes that all i eat is "rabbit food" lol) and they're make up the most of my diet. The diet isn't a huge deal for me because I didnt eat a lot of gluten before this (besides cereal..i LOVED cereal and lived off of it last semester..which may have been why my problems flared up worse when i came to school) but it is an adjustment. I guess I just have to take time to adjust, its jsut hard to have to check over everything before you put anything in your mouth. Also, Im a runner (havent been able to run as much as im used to because of the knee surgery, but its healing good and i should be back to myself this summer) so the being low on carbs wont be good for me..tho i should be fine on fruits, veggies, potatoes, and rice. I just have to be more careful to balance my diet so I have the right mix of carbs, protein, and fats (i naturally dont eat a lot of fats, so im tryin to eat more like addin in some hummus and peanut butter. plus it seems to help when i get shakey) Is a postive change on the gluten-free good enough of a test? Oddly I was almost positive I was goign to "Test" myself by adding back in gluten once I am home for the summer, and then I got sick monday from accidently eating something, and now I am positive I can never put myself throught that. Its jsut not worth it. Tho I don't know what to tell people, since Its never been positively identified..gluten intollerance or sensitivty?

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I say I'm gluten intolerant - if they ask further, I say that I don't have a biopsy diagnosis, but it sure does make me sick.

If you're looking for other good, balanced "grains", try quinoa flakes for a good hot cereal), millet (tasty replacement to rice with more fat/protein), whole quinoa (also higher in fat/protein - and a more complete protein - than rice), amaranth - particularly as a flour to bake with, and buckwheat. (And you can make some easy, very tasty falafels with bean flours!)

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Do they make quinoa flakes in instant form? Like how it comes out with oatmeal? Ive seen irish oatmeal in stores, is that safe. Also, are there any mainstream cereals that are gluten-free? Ive heard of fruity pebbles, but I dont like how sugary they are. I like having cereal because its a quick snack, but i dont like how sugary a lot of them can be.What do you eat when you've been "glutened"?

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lol! I answered the "foods I eat when I'm not feeling well" in the other thread (that's what that bulleted list was) and the cereal question there (and I'm with you on the sugary thing... blech). (the other folks around here will have a lot more useful information on mainstream packaged products - I'm a bit nutty about those ;-) - and cereals too.)

the quinoa flakes are pretty instant... takes about five/six minutes in the microwave (in a couple rounds, so it doesn't boil over for me!). they're not bad, and I prefer them with soy milk (I'm dairy free), cinnamon, and vanilla.

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Almost everyone on this site will tell you that oatmeal is nearly always contaminated by wheat, in the fields and where it is processed. I, too, found Irish Oatmeal in my supermarket, tried it , and got terribly sick. :o I would advise you to avoid it for a while. There are some gluten-free cereals but not in mainstream stores. I buy them in Natural Food stores or online. One thing I do intend to try is Buckwheat, it does not contain wheat and is safe for us.

As for what to tell others, I just tell them I have an intolerance to wheat and other foods. Because of the lo carb craze, it has become more common for people to avoid bread and every restaurant I have been to (they are few and far between) everyone has been very accomodating. My husband usually does the ordering and explaining because he talks easily to everyone and I don't always feel up to doing all of the explaining. We make simple request that the cook use clean utensils with my food and cook my chicken, steak, etc on a clean grill or a piece of foil. I usually order a mashed potato, salad(no croutons) and a drink. You have to be careful about tea bags, sodas, etc. I usually carry my own.

When I accidentally get gluten I eat soft foods for a few days, mashed potatoes, applesauce, chicken, and peppermint tea(gluten-free).

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Curious-

Fruity and cocoa pebbles are gluten free they are sugary though. Envirokidz has some cereals that say gluten free on the box and they are really good. I would stay completely away from oatmeal because of the contamination.

When I have been glutened I eat rice, yogurt, mashed potatoes, jello, and then I drink teas and ensure as well.

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Well the real ones when you boil the potatoes and mash them then they are gluten free...Add seasoning that is gluten free of course

The Betty Crocker instant brand is gluten free...it is manufactured by General Mills so if they did have any gluten it would clearly list wheat,rye,barley,oats on the label. I use this brand when I don't have time to make the real ones.

Some mashed potatos you buy in stores can be flavored etc and contain wheat starch and so forth so always read the labels...I would stick with a brand that will not hide anything such as Betty Crocker

As for ensure ...I drink ensure plus...I usually drink Butter Pecan. It tastes really good chilled I don't care for it if it is not. The ensure and ensure plus are gluten free...most of their other drinks are too.

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Hi curiouifcd,

With all the family symptoms, related disorders, and diagnosises of IBS I would encourage my family members to get checked for celiac disease. It sounds like a high probability. :(

I also though that you might want to get checked for hypethyroid (Grave's disease). The shakiness and weaknes, panic attacks, heart palpitaions all sounds like a thyroid issus. Is your skin and hair dry? Check out the Celiac.com. site for celiac disease and related disorders. You can get an idea of all the symptoms. Another thing I though of when you talked about hypoglycemia and low blood sugar, you might want to watck you intake of starches. The body uses them as sugars and they can spike the blood levels up pretty fast. Things like white rice (brown is better) potatoes, carrots, peas, bannans. If you eat them try making sure you get some fat with it at the same time. Like butter on the rice or sour cream on the potatoes.

Stoneyfield organic yogurt is great. It has the live acidophyllus bacteria that is beneficial to digestion, and the immune system. If you don't want yogurt you can take acidophyllus in pill form. I take a good multi vitamin with iron from Costco and I also take an extra B vitamin complex.

Your diet doesn't have to be bland, McCormick spices are gluten-free so I use powdered garlic, red pepper, chili powder, oregano, ect. on tons of stuff. Olive oil has a great flavor, you can try mixing olive oil with balsalmic vinegar on your salads. Try brushing olive oil or butter, and garlic powder on your veggies and grilling them outdoors.. Superb!! :D

I sure hope you feel better, keep us informed as to how it's going.

Wendy

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I think it would be hard to convince my family to get checked out for it (tho when we found out that my grandma had factor 5- a predisposition to blood clots? a lot of my family did get checked out for it- and quite a few have it). My mom seems to have issues with wheat and such too- she recently went on weight watchers so cut out a lot of junk food and avoids bread and says she feels a lot better. She even gets diarhea after eating pasta or bread. Tho she doesn't udnerstand that it is in more than just bread and such. I checked out hypethyroid and i do seem to have a lot of symptoms (heart palpitation, loss of appetite, dry skin and hair, nervousness, shakiness) tho i dont have rapid weight loss. I'm deemed perfect weight for my health- in fact im used to being about 5-10 pounds lighter, but i havent ben able to run really in 7 months (tho soon i should be able to!). I do have really dry skin, and have always had really sensitive skin. I have to use certain soaps and laundry detergents, otherwise my skin reacts bad. My face is really red (tho i have noticed it has been better in these last few months) and red bumps on my arms and legs. I did get my thyroid checked out i think when they checked for celiac disease, I guess Ill have to make sure to monitor it. i try to make small balanced meals every few hours, instead of the typical "3 square meals a day". It really helps with the shakiness and dizzyness, its just hard to fit em in sometimes- specially with no appetite (except for yesterday, when i was sick and i was starving..ironic lol) im not a huge starch person, and get mine mainly from fruits, vegetables, and brown rice. Are all McCormick seasonings gluten-free? Does it seem like most seasoning blends are gluten-free (i know now to call and double chek with the company, i was just wondering if seasonings were a huge deal to be concerned about - like when eating out. I dont use seasonings myself really, im kind of a plain eater).

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curioisifcd,

You don't have to have all, or any, or even one of the normal symptoms of a disease to have it. for instance the normal symptoms for celiac disease is weight loss with maybe hypErthyroidism, I actually had weight gain and hypOthyroidism (where the thyroid slows down.) As soon as I went gluten-free I lsot 25 punds over a 9 month period without even trying, and my thyroid corrected itself. I now weigh about 125 and am 5'5" tall. I feel great. Your thyroid is a gland that regulates practically every thing in your body. It is a very simple blood test that your doctor should be able to do in his office. Your symptoms soulnd classic to me. :(

Some people have No digestional symptoms at all with celiac disease and are diagnosed because of a nutrient defficiency of something entirely different. It still sounds to me like you are not completely gluten-free. Your mom sounds like she has classic celiacs. Pasta is made, of course, using wheat flour. Some people think that white bread is gluten-free because it is made with white flour, they don't understand that white flour is made from wheat. Could this be a possibility with your mom? <_<

I suffered from rashes on my face and neck and upper arms, shoulders, for years. Dermatologists didn't know what it was. When I went gluten-free it went completly away and never comes back unless I slip up accidentally and get glutenend, even then I'll only get a spot or two not covering a whole area like before.

I would really encourage you to check everything EVERYTHING to make sure you are gluten-free, and then get that thyroid test. What do you have to lose? If it's negative...GREAT, if not, it's easy to correct and maybe make go away in time with simple meds. :)

Good luck, I'll say a prayer for you, Wendy

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Thank you so much, you have been really helpful in this confusing time. I have actually always wondered about my thyroid or the possibilty of being anemic. I have tried to get the dr.'s to test me for it, but my family dr's office is quite frankly..horrible. I asked to be tested for anemia and they got all defense and were shocked that i would want to have it tested (i was a vegetarian, female long distance runner who had a lot of symptoms for it. Also I have always had very irregular periods. I figured better safe than sorry. I think they were shocked that a teenager actually knows something bout their body. I avoid going to that dr's office). I also tried to have my thyroid checked but my dr almost laughed- she said i didnt need it, because i was 5'7 and about 120-125 (i am now 135-140ish, normal weight for my height im told) I think the new dr i went to when i got checked for celiac disease also checked my thyroid, tho i havent seen my results (they just called and said everything was fine) Also, i think my test results got lost (i had my blood drawn up at school at the health center, and then sent back- and it took a lot of phone calls and a few weeks for the results to be sent). Does anyone else have a hard time having blood drawn? The last time when i was in the hospital, it took mulitple people to be able to draw blood from me, and i almost passed out. When i had the blood drawn to test for celiac disease, i passed out and they had to use smelling salts. they always have to draw the blood from my hand, because they cant from my arm..no fun. I know I haven't been completely gluten-free, because after they said I was negative for celiac disease i guess i contributed it to something else. I thought I was jsut wheat sensitive or something, so i thought rice chex and rice krispies and the likes would be fine, as long as i didnt eat wheat (tho i dont feel good after eating these). I thought since i was negative, that i shouldnt be gluten-free. tho after reading on here and seeing the changes from being mainly gluten-free ive felt a lot better and am determined to eat 100% gluten-free. Eating gluten free does not make up for how sick it makes me feel, especially because it makes me sick for a few days! My mom doesnt understand celiac disease at all, she just has come to realize pasta and bread make her sick. Im going to try and show her this site, maybe that'll help her understand it better and see how serious it is. I also need to show it to my sister- she has worse stomache problems then me, altho she has been doing better (she is one of those who will eat pizza if its on a friday, so then shell be home all weekend dealing with the side effects and hopefully be better by monday for work)

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That made me think of the time I went to a restaurant and asked if the potato's (mashed) were real. She said yes and I took one bite and knew. I asked her and shesad they are real, they came out of a box. Needless to say I didn't even make it out of the place before I needed to use the restroom. I guess it served them right!

(she said)

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LOL I guess so! I think I would be nervous to order mashed potatoes at a restuarant (i dont really like them anyways, prefer baked). Who knows what restuarants add to things. Is rice usually safe at resturants? Do you eat out a lot?

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I probably eat out twice a month, just because I miss the social interaction of a meal. But it's hard because I worry about cross contamination and have often ended up sick. I was out of town last week and ordered a hamburger without a bun and the guy called my name and as I walked up he said, " I forgot, no bun." then took the bun off the hamburger. It didn't matter at that point because I wouldn't eat it.

The only place I have found and this was recently is The Outback. It was pure joy when they handed me a gluten-free menu! :D

What about you, do you eat out much?

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My sister (she eats out a lot) runs into that problem too- she asked for no bun or no roll but they always forget- tho she thinks its fine to just take the bun off and eat it anyways. I don't eat out a lot (I'm a college freshman, don't get off campus much and I like to cook when I am home) but my family likes to go out a lot, so I do end up going out once in a while. I do have to eat in the cafeteria, so I guess that is kind of like eating out. Back at home we have a lot of restuarants to choose from (im from a pretty big city, with A LOT of restaraunts). We do have an Outback, but its very busy and we don't like it- the food is way spicy. We do have a P.F. Chang around- I've heard that thats pretty gluten-free friendly? Are there any other good restarant choices?

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Most of Outback's gluten-free food isn't spicy - because their spice blends have gluten, so you ask for it without the spices.

PF Chang's is great - a laminated gluten-free menu is like heaven! ;-)

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