Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Kody

Hi Guys, Newly Diagnosed And A Few Questions

Recommended Posts

So, I'm new here and I dunno if I'm at the right section, but I suppose I'll find out soon enough.

I was just going to ask a few questions... I have millions, but I'll do some reading around before I ask 'em away. Seems this is going to be quite a challenge, everything seems to have gluten! But I did have a few questions to ask real quick... one is, how exactly is celiac pronounced? si-leeac?

And the other was, for those of you that had to deal with celiac disease symptoms your whole life, did you have a hard time focusing and even doing simple tasks like reading, etc? Were you always tired? Also, when you changed your diet how much did it change you and how much better did you feel? Did it make life a lot easier?

Retarded questions, but that's what I'm good at. And nice meeting you guys btw, I suppose I'll be here often now.


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome!

I say see leeac, but it also sounds kind of like silly yak.

I did have the trouble focusing that you mentioned, and was/am always tired. I have been on the diet for 10 months, but ended up having a few other health issues as a result of being undiagnosed for so long, so I'm probably not the right person to tell you how long it takes to heal.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

^ hey thanks for the fast response! I'm reading my eyes out right now. So much to learn. Gotta head to work soon tho, but I'll be back later tonight.

and yeah I was pronouncing it a lil wrong. thanks a ton.

Lessee... before I leave here, I've aten today four apple sauce cup thingies (organic), a banana, an apple and a protein shake thing in it... it had no gluten or wheat that I could find, but it did have soy protein, is that bad? I plan on making steak when I get home. I even already bought wheat-free shampoo. Anything else I should do? I know... I'll go check my cologne hah.

So, the way I feel, it takes so much effort just to get up, get online read and focus. I feel so dizzy and light headed. That's why I was wondering about the recovery stage. :D

edit: btw, I'm 18, if that helps any.


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

Go to nini's website, she's a member here and in her signature there is a link to her website. You can find her by doing a member search. She has a newbie kit that will help and will answer some of your more basic questions.

You seem to be heavy in the fruits, which can be good, but they're really high in sugar .... you want to balance that out with adequate protein. Soy protein is fine, but many here are sensitive to it. In the beginning, meat, chicken, eggs, fish, fruits, vegetables, rice and potatoes are a good, healthy start. Then from there you can try some of the gluten-free goodies, but I'd stick with those basic foods until you heal some. Some of your brain fog might be from all the sugar you are eating in the way of fruit.

edit -- she posted right below me, you don't need to search! She has great information.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
Guest nini

here I am, you don't have to search for me... just click on the link in my signature and then go to the bottom of the page and find the link for the "newbie survival kit"

Share this post


Link to post
Share on other sites
So, I'm new here and I dunno if I'm at the right section, but I suppose I'll find out soon enough.

I was just going to ask a few questions... I have millions, but I'll do some reading around before I ask 'em away. Seems this is going to be quite a challenge, everything seems to have gluten! But I did have a few questions to ask real quick... one is, how exactly is celiac pronounced? si-leeac?

And the other was, for those of you that had to deal with celiac disease symptoms your whole life, did you have a hard time focusing and even doing simple tasks like reading, etc? Were you always tired? Also, when you changed your diet how much did it change you and how much better did you feel? Did it make life a lot easier?

Retarded questions, but that's what I'm good at. And nice meeting you guys btw, I suppose I'll be here often now.

Welcome! Initially you'll spend a ton of time researching ingredients, but it gets much quicker eventually. Now I don't spend any more time grocery shopping than I did pre-gluten-free.

My symptoms started about ten years ago, mild at first and getting worse so gradually that I hardly noticed. I got really bad about a year before diagnosis and I had horrible fatigue, joint pain and brain fog. I slept fourteen hours a day. I went from walking about ten miles a day to barely making it up the stairs to my apartment. I was in grad school at the time and could not focus enough to read and comprehend articles. I couldn't remember a thing and couldn't do simple things like balance my checkbook. I had to drop out of school and move back in with my parents.

Now I've been gluten-free for just over a year. I have a job, I'm back in grad school, I workout several times a week, my joints no longer hurt, I have more energy than I've had in years. It took six-nine months for me to fully heal and get my strength back. Some people heal more quickly, some more slowly.

Soy protein should be fine - as long as you don't have a soy intolerance! It's fairly common for celiacs to have other food intolerances so if you're not getting better after a few months, you'll definitely want to look into this. Dairy can also cause temporaray problems. It's digested by the tips of your villi so until you intestines heal it may cause you problems. This wasn't the case for me, but it's so common that I thought I'd mention it.

When you make steak, make sure you're using a pan that's not scratched up. The scratched can trap gluten and cause contamination even if you've washed it carefully. If you're grilling, grill on foil. The grill grate is most likely contaminated plus some charcoals are made from wood which contains glue which can contain gluten...

Good luck!


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

Share this post


Link to post
Share on other sites

Welcome Cody -- you're certainly in the right place! I think that you will find all the answers you need SOMEWHERE on the board.

Going gluten-free can be pretty daunting at first . . . . I was so used to my "regular" foods (mostly fast foods because of my schedule at the time and my husband's). I was very fortunate that I found a fantastic dietician in our city who specializes in Celiac. In fact, I'm going back to see her in two weeks . . . just for a "brush up" and to address some additional things that have happened.

Don't know what your financial situation is . . . my kids are 20 and 24, and I KNOW theirs . . . . but some of the members have purchased (actually it's more like "leased") either Gluten Guard of Clan Thompson software. Both are available for either PC's or PDA's or BOTH. It appears that the Clan Thompson version is a little more comprehensive with regard to the contact information, the last date of confirmation -- things like that. My husband and I are going to go ahead and purchase it -- it will be easier to take the PDA with us to the grocery and know for SURE than to spend time reading labels -- and we've been at this gluten-free stuff for a year and 1/2.

There are some soy drinks that you need to be aware of . . . they contain gluten. I have a copy of the Delphi list (a list which is compiled from the postings on the board) from two years ago, I believe . . . don't know when the last update was. If you would like to have it, just PM me and give me your e-mail address.

In the meantime, again welcome, and don't be afraid to ask questions here . . . we've all been where you are at one time.

Lynne


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

Share this post


Link to post
Share on other sites

Thanks guys, I appreciate it so much (seriously =p).

I deliver pizza for my job... I got this job because almost a year ago, working at Subways, I dropped about three sandwhiches in 3 months of working there. I was really good at my job, I always am, super quick, right on track, all that stuff. But I was always tired as hell, couldn't think, got occasionaly dizzy spells and was pretty much always lightheaded. Sometimes my body would even feel a little shakey... my eyes would hurt for no reason, or at the least just get a little watery (symptoms that still happen right now), and not to mention all the bathroom problems that changed so often. I could never what to expect.

Now all I have to do is drive. Easy enough, right? Well it's embarrasing to talk about but I can't focus at all, I feel like I'm dead. I feel like my brain doesn't work. I'm smart as hell and I know it, but I get sidetracked easy and forget what I'm doing. Feel like I just can't use my mind at all. Brain fog it's called, right? I do stupid things all the time... I have no idea why. I say things I shouldn't say, etc, all because I can't think things out before I act. I forget what day it is constantly. I take the wrong turn, etc etc, its real often. NOt because I'm lost or don't know where to go, but because I forget what I'm doing etc..

It's hard to explain. But my list of symptoms is like three pages long. No joke. :(

Don't know what your financial situation is . . . my kids are 20 and 24, and I KNOW theirs . . . . but some of the members have purchased (actually it's more like "leased") either Gluten Guard of Clan Thompson software. Both are available for either PC's or PDA's or BOTH. It appears that the Clan Thompson version is a little more comprehensive with regard to the contact information, the last date of confirmation -- things like that. My husband and I are going to go ahead and purchase it -- it will be easier to take the PDA with us to the grocery and know for SURE than to spend time reading labels -- and we've been at this gluten-free stuff for a year and 1/2.

I'm pretty good financially. I could definitely afford a PC software. Can you tell me more about this and what it does, or where to get it?

My symptoms started about ten years ago, mild at first and getting worse so gradually that I hardly noticed. I got really bad about a year before diagnosis and I had horrible fatigue, joint pain and brain fog. I slept fourteen hours a day. I went from walking about ten miles a day to barely making it up the stairs to my apartment. I was in grad school at the time and could not focus enough to read and comprehend articles. I couldn't remember a thing and couldn't do simple things like balance my checkbook. I had to drop out of school and move back in with my parents.

Now I've been gluten-free for just over a year. I have a job, I'm back in grad school, I workout several times a week, my joints no longer hurt, I have more energy than I've had in years. It took six-nine months for me to fully heal and get my strength back. Some people heal more quickly, some more slowly.

Holy cow, that sounds just like me. I even have red cheeks and black lines under my eyes that have been there for like 10+ years or something. I can run a mile easily, but just walking up the stairs makes me breathe heavily... its all weird. I get sores in my mouth, those sores on your lips, etc, forgot what they're called... ulcers? And does it really take so long to recover... will my mind at least clear up? thats what is bothering me the most.

I think my problem is I have been this way my whole life, or at least as long as I remember. So its hard for me to point out symptoms etc... because, I don't know any different, I don't know what its like to be normal. I've always known something is wrong with me. I even dropped out of HS early (yes I graduated, in College now^^) because of the way I felt. I slept 14 hours a day too. I can't fall asleep, but once I do, I can't get up. I spent two years visiting doctors. I'll say this in the kindest way I can, I really really dislike doctors. I've tried everything. Even stayed overnight and got tested for sleep apnea (for my fatigue and tiredness...), even checked out my insomnia, got blood tests, x-rays, full skull cat scan, etc etc... everything always came negative. All the doctors told me I was healthy, nothing was wrong with me, etc etc. So as I did my regular stay up all night and research on the internet, I started to learn about allergies and eventually celiac disease. Now I'm hoping this new diet will fix me...

Some of your brain fog might be from all the sugar you are eating in the way of fruit.

heheh, yeah, that would make sense. I actually don't eat enough fruits at all. I just ate a lot today because I had no idea what to shop for... it was my first gluten-free shopping I ever did, and the fruits and veggies seemed to be the only thigns gluten-free. Even chicken and meat had gluten sometimes, with all their breading on it etc.

I do have one more question though... what do I need to check for when reading allergies? So far I've been checking for gluten, modified food starches and... that's it.

edit: Wow. So I downloaded that Newbie kit... what a freaking life saver. This is going to help so much...


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

Welcome Cody! Just wanted to say HI! I am one of the few that felt better almost over night after going gluten-free. And it will get easier, as you learn what to look for on labels, and then eventually you get used to a product and you trust it (still checking every now and then b/c companies will change things from time to time).

This board is great, but the best thing to do is research. Everyone has different experiences. Asking if gluten caused someone here to (for example) throw-up all night long may get you 30 responses that it did, but that does not mean that it was gluten that made you throw up. People with gluten intolerances still get stomach viruses and things like that. Take everything with a "grain of salt" because we are all people here, and not doctors (well, I think there is ONE doc in the board).

That being said, most everyone has great cooking ideas, or eating out ideas, and you will figure it out. For now, you have to be a really smart detective. READ the ingredients in EVERYTHING! Even milk! Train youself! It will pay off. I hope you feel better soon!


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

Share this post


Link to post
Share on other sites

Hi Cody, and welcome to this board. Not retarded questions at all, there are NO stupid questions here. If you need to know, it's an excellent question.

I sure hope that the gluten-free diet is going to help you. Your story is, unfortunately, not unusual at all. There are too many clueless doctors out there, and many here had to diagnose themselves, me included. I am glad you figured it out at the age of 18, not 52, like me. I felt so much like you when I was your age. Too bad there were no computers and no Internet then for me to figure it out. I am happy that it's so much easier these days to do research!

If you are planning on eating gluten-free breads/toast, make very sure you buy yourself a new toaster. You can't possibly clean a toaster adequately to be safe. The same goes for plastic strainers, scratched non-stick cookware, wooden cutting boards and wooden cooking spoons.

Do you live on your own, with your family, in a dorm, or shared living arrangements? If you're living with others, you'll need to educate them on cross-contamination. But there is no point in giving you specific advice on that, until we know more about you.

Good for you for buying gluten-free shampoo. I hope you know what to look for in products, right? If it says wheat germ oil, barley extract, oat bran, it's pretty obvious, of course. But vitamin E can be derived from wheat germ oil, too. But just recently someone posted a list of what those things are in latin, and I wouldn't have known. If you find 'Triticum vulgare' (wheat), 'Avena Sativa' (oat), 'Hordeum Distichon' (barley) or 'Secale Cereale' (rye), it's gluten, too!

Also, check your lip balm, lotion, toothpaste.

The trick with meat is, to never buy anything that's already breaded or has spices on it. Buy plain meat, and add those things yourself if you want them. And that goes for everything you eat (unless it specifically says gluten-free on it, or is on the 'safe' list you've now got).

You may want to eliminate dairy for the time being. Most people with celiac disease can't tolerate dairy intitially (some can have it again after a few months).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites
If you are planning on eating gluten-free breads/toast, make very sure you buy yourself a new toaster. You can't possibly clean a toaster adequately to be safe. The same goes for plastic strainers, scratched non-stick cookware, wooden cutting boards and wooden cooking spoons.

Wow. okay I'll do that... that makes sense.

Do you live on your own, with your family, in a dorm, or shared living arrangements? If you're living with others, you'll need to educate them on cross-contamination. But there is no point in giving you specific advice on that, until we know more about you.

I rent the basement to this house with a roommate. It's just me and him, two rooms, a kitchen, living room, bathroom. I don't even know fully what cross-contamination is... like, if someone takes a bite of their pizza with their fork and then I use that fork for my rice? that would be cross-contamination right?

You may want to eliminate dairy for the time being. Most people with celiac disease can't tolerate dairy intitially (some can have it again after a few months).

Good idea. :)

This board is great, but the best thing to do is research. Everyone has different experiences. Asking if gluten caused someone here to (for example) throw-up all night long may get you 30 responses that it did, but that does not mean that it was gluten that made you throw up. People with gluten intolerances still get stomach viruses and things like that. Take everything with a "grain of salt" because we are all people here, and not doctors (well, I think there is ONE doc in the board).

yeah that makes sense...

thanks again guys ^^


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

Cross contamination is what you're talking about ... if your roommate eats a pizza, uses a knife to cut it, then does a poor job of cleaning the knife and the counter, then you make something for yourself with that knife on that counter. Another way is your roommate makes a peanut butter sandwich, puts the peanut butter on the bread, then gets more peanut butter with the same knife, then later you go to use the peanut butter, but it's contaminated with crumbs you may not be able to see.

Wooden spoons, scratched teflon, cast iron, toasters, plastic colanders, are all sources of cc.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Cody,

Welcome to the board! It can be overwhelming at first, but we are here to help. We've been there and want to help!

I thought I'd list some brands of things that I especially like.

for pastas: Tinkyada brand (rice based) pasta is a great one. Many upscale grocery stores, health food stores, and online carry it. I tried a bunch of others and this is by far my fave. They have spag, fettucine, elbows, spirals, penne, lasagna, etc. It takes a little longer to cook, but we use it all the time.

For tacos, enchiladas, fajitas, etc...McCormick's brand seasoning packets. Make sure you read each one each time, as ingredients change, but they are very good about listing gluten or sources of gluten. you can online to their website and click on an individual seasoning packet and get a list of ingredients, so you'll know which ones are safe.

For soy sauce: specialty brand- San-J makes a gluten-free version (they also make a gluten filled version, so make sure you get the right one. Also, some of La Choy's are safe, as well as the Kroger grocery store version (not sure where you are from).

If you can tolerate dairy, many ice creams are gluten free. Except for the obvious, like Cookie Dough, Brownie, etc. Edy's provides information online. In fact, many companies post their info online because so many people ask.

Due to the 2006 Food Allergen/Labelling Law, food manufacturers must list if their food contains any of the topic 8 main allergens: dairy/milk, wheat (but not gluten...just because it is wheat free does not mean it is necessarily gluten free, since gluten is in rye, barley, malt, and processed oats), eggs, soy, fish, shellfish, nuts, peanuts. It should make shopping some easier (easy to pick out a big fat listing of WHEAT in bold letters at the bottom of ingredients.)

Some people are told that spelt is ok for Celiacs. It is not. It still contains gluten.

Remember that there are two parts to being truly gluten free (and not just gluten lite) 1. ingredients and 2. cross contamination/preparation.

There are some great gluten free pretzels out there. I love them. I would dip them in flavored cream cheese or a safe dip (like a Kraft or Helluva dip that was safe). Instead of crackers, I use a lot of tortilla chips.

Give us something you want to make---we'll provide the brands, a recipe, or suggestions. Promise!

Remember, you must assume that anything has gluten in it until you know it is safe. I used to say "Oh, I'm sure X is ok"...yeah, I finally learned. Gluten can be in anything and everything, even if you can make it gluten free at home! When in doubt, go without!!!!!!

~~~~Need to note here that I do not eat these things anymore because I have other food intolerances now, but, still wanted to share the info.

Let us know what we can do to help.

Laura

Share this post


Link to post
Share on other sites
Cody,

Welcome to the board! It can be overwhelming at first, but we are here to help. We've been there and want to help!

I thought I'd list some brands of things that I especially like.

for pastas: Tinkyada brand (rice based) pasta is a great one. Many upscale grocery stores, health food stores, and online carry it. I tried a bunch of others and this is by far my fave. They have spag, fettucine, elbows, spirals, penne, lasagna, etc. It takes a little longer to cook, but we use it all the time.

For tacos, enchiladas, fajitas, etc...McCormick's brand seasoning packets. Make sure you read each one each time, as ingredients change, but they are very good about listing gluten or sources of gluten. you can online to their website and click on an individual seasoning packet and get a list of ingredients, so you'll know which ones are safe.

For soy sauce: specialty brand- San-J makes a gluten-free version (they also make a gluten filled version, so make sure you get the right one. Also, some of La Choy's are safe, as well as the Kroger grocery store version (not sure where you are from).

If you can tolerate dairy, many ice creams are gluten free. Except for the obvious, like Cookie Dough, Brownie, etc. Edy's provides information online. In fact, many companies post their info online because so many people ask.

Due to the 2006 Food Allergen/Labelling Law, food manufacturers must list if their food contains any of the topic 8 main allergens: dairy/milk, wheat (but not gluten...just because it is wheat free does not mean it is necessarily gluten free, since gluten is in rye, barley, malt, and processed oats), eggs, soy, fish, shellfish, nuts, peanuts. It should make shopping some easier (easy to pick out a big fat listing of WHEAT in bold letters at the bottom of ingredients.)

Some people are told that spelt is ok for Celiacs. It is not. It still contains gluten.

Remember that there are two parts to being truly gluten free (and not just gluten lite) 1. ingredients and 2. cross contamination/preparation.

There are some great gluten free pretzels out there. I love them. I would dip them in flavored cream cheese or a safe dip (like a Kraft or Helluva dip that was safe). Instead of crackers, I use a lot of tortilla chips.

Give us something you want to make---we'll provide the brands, a recipe, or suggestions. Promise!

Remember, you must assume that anything has gluten in it until you know it is safe. I used to say "Oh, I'm sure X is ok"...yeah, I finally learned. Gluten can be in anything and everything, even if you can make it gluten free at home! When in doubt, go without!!!!!!

~~~~Need to note here that I do not eat these things anymore because I have other food intolerances now, but, still wanted to share the info.

Let us know what we can do to help.

Laura

Awesome! I just printed your post out for next time I go shopping... if thats okay. :D yeah uhm... I'd love to go cook me some stuff, but the problem is, I don't really know how to cook. I mean I do. I can cook eggs. I can't make bread or anything... lol. I guess it's time to learn... I've always needed to anyways. This diet would be so much easier if I wasn't off to College and on my own, Mom could cook me anything I need. :(

Off topic: Did any of you have a problem with no one believing your sick? Even most of my own family doesn't believe how sick I really am. Am I the only one who has to deal with this crap? My Dad, for example, doesn't take me seriously at all. I love his advice, his work ethic, all that... but the worst advice I have ever heard from him was, after I told him how I feel: "You just have to learn how to live with it."

yeah right.... I'mma find out what it is and solve it, then live with it.

sorry to go off topic again, but yeah, did anyone else go through anything like this?


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites
Off topic: Did any of you have a problem with no one believing your sick? Even most of my own family doesn't believe how sick I really am. Am I the only one who has to deal with this crap? My Dad, for example, doesn't take me seriously at all. I love his advice, his work ethic, all that... but the worst advice I have ever heard from him was, after I told him how I feel: "You just have to learn how to live with it."

yeah right.... I'mma find out what it is and solve it, then live with it.

sorry to go off topic again, but yeah, did anyone else go through anything like this?

Yes, it's very common around here. I mean, I actually have trouble believing that my health problems are as simple as needing to avoid certain foods, I can understand how they would have trouble believing it. Those I live with, on the other hand, KNOW how sick I get. In the end, that's all that matters. My dad and grandmother are starting to believe it, only because I was so ill I could hardly function last time I saw them. They are also happy to see me gaining weight, even if it's only a little bit.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Thanks Carla. You have no idea (okay maybe you do) how much it helps knowing that I'm not the only one that has to go through this. Sick as a dog my whole life for no apparent reason. Can focus somedays and can't other days. Never know how I'm going to feel. No one acknowledging how sick you really are. Not telling people anymore, just living with it. Knowing that all this crap is holding you back but not being able to use it as an excuse.

hm... I'll be quiet now. :P


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

Hi, Cody!

Welcome aboard! Don't let it overwhelm you! So far, you have received some great advice. And, believe me, no matter what kind of question you have, it is never a stupid one. But, one little thing does concern me. You said that you deliever pizza. I am worried for you because you are actually exposing yourself to gluten. You might think a pizza is harmless, but it's not. The restaurant the pizza comes out of is full of flour, which can be inhaled by you. It is not good for your system at all. This can cause you to feel tired and sick. Maybe it's time to change jobs. It will be better for you in the long run. I'm sorry this news isn't good, and I usually don't like to scare people, but, if you want to get better, then you should really consider rethinking your lifestyle. Remember, Celiac's is never going away. It is with you the rest of your life.

Vicki

gluten-free for 11 years and still going!

Share this post


Link to post
Share on other sites
Thanks Carla. You have no idea (okay maybe you do) how much it helps knowing that I'm not the only one that has to go through this. Sick as a dog my whole life for no apparent reason. Can focus somedays and can't other days. Never know how I'm going to feel. No one acknowledging how sick you really are. Not telling people anymore, just living with it. Knowing that all this crap is holding you back but not being able to use it as an excuse.

hm... I'll be quiet now. :P

Yea, I was always the kid with the belly ache who had a "low threshold of pain" and the adult who was a hypochondriac always trying the latest diet fad to get healthy (or was that why I was so skinny?). I'm the family flake. :) I'm glad you didn't wait till you were 43 to finally figure it out, like I did!!! The really annoying part is looking at family members you KNOW have it, yet they don't believe you and won't be tested because they don't want to give up the foods they like ... WHAT?! Because they don't want to give up the foods they like? They'd rather not know? It's almost admitting that they know they have it because if they were sure they didn't they wouldn't have a problem getting tested to prove me wrong!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
Hi, Cody!

Welcome aboard! Don't let it overwhelm you! So far, you have received some great advice. And, believe me, no matter what kind of question you have, it is never a stupid one. But, one little thing does concern me. You said that you deliever pizza. I am worried for you because you are actually exposing yourself to gluten. You might think a pizza is harmless, but it's not. The restaurant the pizza comes out of is full of flour, which can be inhaled by you. It is not good for your system at all. This can cause you to feel tired and sick. Maybe it's time to change jobs. It will be better for you in the long run. I'm sorry this news isn't good, and I usually don't like to scare people, but, if you want to get better, then you should really consider rethinking your lifestyle. Remember, Celiac's is never going away. It is with you the rest of your life.

Vicki

gluten-free for 11 years and still going!

yeah I thought about that... but I figured as long as I don't eat any of it, I'll be fine. Am I right? I really don't want to change jobs. I make decent money here (60-90 every night in tips, and $5 an hour to go with it). As a College student I can't make that anywhere else :(

Maybe I'll just stop helping make pizza. That way the only thing I ever have to touch is the pizza box and the hot-baggy thing its going in. :P

Yea, I was always the kid with the belly ache who had a "low threshold of pain" and the adult who was a hypochondriac always trying the latest diet fad to get healthy (or was that why I was so skinny?). I'm the family flake. :) I'm glad you didn't wait till you were 43 to finally figure it out, like I did!!! The really annoying part is looking at family members you KNOW have it, yet they don't believe you and won't be tested because they don't want to give up the foods they like ... WHAT?! Because they don't want to give up the foods they like? They'd rather not know? It's almost admitting that they know they have it because if they were sure they didn't they wouldn't have a problem getting tested to prove me wrong!!

wow that's pathetic... you're better off acknowledging you have a problem, adjusting to your needs and living symptom-free... I was actually wondering if any of my family has this same thing, I'm pretty sure no one has it near as bad as I do... maybe a couple intolerances, etc, but I'm the only Celiac I'm sure. I don't think anyone complains about headaches/dizziness, bloating, bathroom problems, etc like I do.


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

Cody, I somehow didn't catch that you actually help making the pizza. You seriously can't do that! There is absolutely no way you can avoid being glutened making regular pizza. If you want to get well, you'll have to restrict yourself to delivering it. Even though that isn't great, but you might be okay if you're careful. Just remember, others who have gluten on their hands will have touched the boxes, you need to wash your hands often, and don't eat anything after touching those boxes before you wash your hands thoroughly with soap and water.

I know what it's like when others don't believe you're sick as well. In fact, for 52 years I was told I was just lazy, and didn't care enough about others to do stuff for them, when I was saying I was sick and had no energy. And then, if I forced myself to do things, I'd be REALLY sick for two weeks!

I'm glad you didn't listen to others any longer, and are taking your health into your own hands.

You need to explain about cross contamination to your roommate. You need separate containers of peanut butter, mayonnaise, jam etc., anything that you would both use, and put onto bread or other gluten containing food. Make sure you label yours, so they don't get mixed up.

Put a sign onto your toaster too, saying something like, "Cody's toaster, no regular bread allowed". Maybe have one side of the kitchen being yours, and the other side your roommate's side? Have your own pots and utensils, cutting board etc., that he can't use. Keep stuff separate. It sounds complicated, but it can be done.

The same goes for food. Don't keep your food near his gluteny stuff. You'll regret it if you do.

Buy yourself a gluten-free cookbook. Anybody with a brain who can read, can learn to cook by following simple instructions from a cookbook. If you run into snags, when you don't understand something, come and ask us.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites
Cody, I somehow didn't catch that you actually help making the pizza. You seriously can't do that! There is absolutely no way you can avoid being glutened making regular pizza. If you want to get well, you'll have to restrict yourself to delivering it. Even though that isn't great, but you might be okay if you're careful. Just remember, others who have gluten on their hands will have touched the boxes, you need to wash your hands often, and don't eat anything after touching those boxes before you wash your hands thoroughly with soap and water.

I know what it's like when others don't believe you're sick as well. In fact, for 52 years I was told I was just lazy, and didn't care enough about others to do stuff for them, when I was saying I was sick and had no energy. And then, if I forced myself to do things, I'd be REALLY sick for two weeks!

I'm glad you didn't listen to others any longer, and are taking your health into your own hands.

You need to explain about cross contamination to your roommate. You need separate containers of peanut butter, mayonnaise, jam etc., anything that you would both use, and put onto bread or other gluten containing food. Make sure you label yours, so they don't get mixed up.

Put a sign onto your toaster too, saying something like, "Cody's toaster, no regular bread allowed". Maybe have one side of the kitchen being yours, and the other side your roommate's side? Have your own pots and utensils, cutting board etc., that he can't use. Keep stuff separate. It sounds complicated, but it can be done.

The same goes for food. Don't keep your food near his gluteny stuff. You'll regret it if you do.

Buy yourself a gluten-free cookbook. Anybody with a brain who can read, can learn to cook by following simple instructions from a cookbook. If you run into snags, when you don't understand something, come and ask us.

Well, I hardly ever make pizza. If I get bored and am waiting for a run, I 'might' help make pizza. But yeah... I'm not making pizza anymore. Is it seriously bad if I deliver pizza? I'm gone most of the time anyways. I can't eat gluten... but does it getting on my skin make me sick?

I don't know. I really like this job. If I go to a regular $7 an hour or something job somewhere, well, I won't be doing very good financially... I'd try being a salesman or something, assuming I get healthier soon, but that's impossible going to school and all...

And yeah, I'll do all that seperating stuff and talk to him when he gets home. I was going to drink some strawberry milk stuff, but it had "modified food starch" on the ingredients so I decided not to. Was I wrong or right? :P

Also, I ordered a gluten-free cookbook already and a book called "against the GRAIN", they should be here anytime now.

I'm hoping I'll be okay just driving around all night, delivering pizza, because I seriously don't know what I'll do without this job. :( Is it really that bad??

edit: nevermind, reread your post, restrict to just delivering... okay, I can do that. :D I'll just let my managers know that I'm not making pizza anymore. They'll have to deal with it. As a matter of fact, I won't even cut the pizza. Damn, people are going to complain. But that's fine. I'm a leader, I do what I want.


"I have failed and that is why I succeed."

Share this post


Link to post
Share on other sites

As for your job, consider yourself to be like the Orkin man who goes to people's houses and sprays poison to kill bugs. If you had poison all over your hands you would act a certain way, not touching anything and washing really well before you eat. To you, gluten is poison!

As for the modified food starch. Things got easier. With the new labeling laws, if a product has wheat, it must say so. Since food starch is usually wheat, potato or corn, if it doesn't say it has wheat in the allergy statement, it's okay. You still need to read the other indgredients in case it contains barley (malt), oats, or rye, but wheat got easier to identify with the new laws. If there is no allergy statement (most have them by now), then I'd play it safe and not eat it. You were right, you never eat anything unless you are 100% certain it's safe.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Cody,

I'm happy that this is helping you. You have no idea how common your posts are. Which, is actually sad...sad that so many people go through this. The GOOD thing, though, is that you found this forum where you can get support and answers. You'll learn things here that a doctor would not have a clue about, or even a dietician. You really have to live this to get it. And soon, you'll be sharing this advice with another newbie!

We have all had people question us. Honestly. And it sucks. And sucks some more. But, at the end of the day, you are the one who lives your life, you make your decisions. You answer to you. If this is the answer to your problems, then you'll learn to deal with it and move on. Would you like some info to print out to show to your family? If so, let me know, I'll direct you to some good articles (that are written by or reference MDs and research studies.) It might be to your benefit if, once you feel comfortable, sitting your family (or others) down, saying that under no certain terms do you need their support, and you would do anything you could to make them feel better, and you want the same respect. And then present them with information. Some of us have had to do that, because support from family and friends really makes a difference.

For a quick meal, you might like any of the Tinkyada pastas with velveeta cheese melted over it. (My husband actually likes "my" "shells and cheese" better than the regular pasta).

Many spaghetti sauces are gluten free. Brown some ground beef, add onions, mushrooms (or, not!), drain fat, put back on stovetop, add spag sauce, heat up, serve over pasta. Quick, and you can make a big batch of it.

I eat a lot of my "sandwiches" in lettuce wraps, or i just roll up the meat and cheese (and mayo).

We are full of ideas!!!!!

(I was diagnosed in grad school at age 23...I didn't really cook too much either and didn't have a lot of money! So, I understand.)

Share this post


Link to post
Share on other sites
As a matter of fact, I won't even cut the pizza. Damn, people are going to complain. But that's fine. I'm a leader, I do what I want.

Last weekend we were eating at someone else's house (I brought all my own food) and he asked me to hold the buns so he could put hot dogs in them. I said NO!! I don't touch the stuff!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites