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  1. #1
    Join Date
    Oct 2006
    Location
    Allentown, PA
    Posts
    587

    Diagnosed with celiac (can't eat wheat)

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    I'm *HOPING* someone else has this here because I am completely and totally overwhelmed.

    Apparently I don't have IBS or lactose intolerance ... I have celiac. (Celiac damages the small intestine which then causes the lactose intolerance, but in theory I may be able to have dairy after I stop eating wheat. Oooh, I might be able to have cottage cheese again! That's the good news, I guess)

    I'm an athlete. Now I've just been told I can't eat ever again for the rest of my life: bread, pasta, oatmeal (gets contaminated from the processing, I've read), pancakes, muffins, waffles, crackers, pretzels, bagels, english muffins, toast, croutons, etc. etc. The list goes on and on and on.

    I *live* for cereal. I *love* Grape Nuts.

    Carbo-loading pasta dinners are out forever. So are pancake breakfasts. This stinks!

    On the one hand I'm happy that it's not IBS because there's no cure or real treatment for that. But on the other, WHAT THE HECK AM I SUPPOSED TO EAT FOR CARBS?!?!?

    Fortunately I'm going to be seeing a nutritionist. Unfortunately I'm not seeing one at this very second.

    So, anyone else celiac out there? If so, please help. So far the Web sites I've looked at aren't very good, but I've only known about this for 2 hours.
    ~ Susie

    "Keep plugging along. The finish line is getting closer with every step. When you see it, you won't remember that you are hurting, that anything has gone wrong, or just how slow or fast you are.
    You will just know that you are going to finish and that was what you set out to do."
    -- Michael Pate, "When Big Boys Tri"

  2. #2
    Join Date
    Jul 2006
    Location
    Ohio
    Posts
    2,824
    (((OTG))),

    It is good you found out and will be seeing a nutritionist. I do know there are a lot of support groups on Delphi Forums and Yahoo Groups, although I have no idea how good they are.

    Hopefully your food outlook will improve with knowledge from others living with this and after seeing the nutritionist.
    Jennifer

    “Live as if you were to die tomorrow. Learn as if you were to live forever.”
    -Mahatma Gandhi

    "We are what we repeatedly do. Excellence, therefore, is not an act but a habit."
    -Aristotle

  3. #3
    Join Date
    Apr 2006
    Location
    Seattle
    Posts
    8,548
    can you say RICE?
    there's potatoes too.
    I stayed on a diet for a year which had no wheat. (In the end i added sprouted wheat)
    THIS is tough for Italians (where everything is pasta and bread!)
    the first thing i let go of was cereal breakfast.

    It is hard, it's a major cultural shock, but i know of two women with celiac disease, one is Hungarian, the other WASP.

    Mimi
    Mimi Team TE BIANCHISTA
    for six tanks of gas you could have bought a bike.

  4. #4
    Join Date
    Apr 2006
    Location
    Seattle
    Posts
    8,548
    out of curiosity, would you mind telling me if you have type O blood?
    Mimi Team TE BIANCHISTA
    for six tanks of gas you could have bought a bike.

  5. #5
    Join Date
    Jan 2006
    Location
    San Francisco, CA
    Posts
    1,080
    I don't have Celiac, but I found out in Feb that I'm allergic to wheat (I had suspected it for a long time). It causes serious breathing difficulties and triggers asthma attacks, so as a racer I have eliminated it from my diet. And almost immediately I lost weight (which has more to do with the fact that I over-consumed pasta than than wheat is evil -- it's not).

    Like you (and most Americans) I lived on pasta and bread. Somehow, I've been able to get enough carbs to continue to ride and race at a high level. The best substitute for me has been corn -- tortillas are great! Rice also works. Oats are good too. But I sure do miss beer and pizza and hamburgers (not the same without the bun).

    If you have a Trader Joes or similar health food grocery in your area, you'll find a ton of substitutes for wheat pasta and wheat bread. I stay away from them but I know lots of folks who love them.

    Good luck to you! Celiac isn't a death sentence. Once you've learned how to eliminate and replace wheat in your diet, I'm sure you'll start feeling much better.

    And isn't it great to finally know what was wrong with you?

  6. #6
    Join Date
    Oct 2006
    Location
    Allentown, PA
    Posts
    587
    Velogirl, if it's not too much trouble, could you give me an idea of your sample menu for a day?

    Ugh I hate corn by itself, but can tolerate it on the cob. But I do like tortillas.

    I may not be able to eat oatmeal, either. My problems were a LOT worse when I was eating oatmeal every morning. I have read that the oats are "contaminated" because they are handled on the same equipment as wheat. Although it's possible I may be able to find some that are certified gluten-free.

    One Web site suggested cream of rice. Looks absolutely awful but I guess I'll have to give it a try.

    Don't know of a Trader Joes, but there are a lot of health food stores around here. And I bet Wegmans has a pretty good selection of gluten-free stuff. Better get out the wallet. I hear it's much more expensive.

    Mimi, I am type O, but my aunt also has celiac and she's not type O.
    Last edited by Offthegrid; 12-13-2006 at 12:56 PM. Reason: Stupid typo
    ~ Susie

    "Keep plugging along. The finish line is getting closer with every step. When you see it, you won't remember that you are hurting, that anything has gone wrong, or just how slow or fast you are.
    You will just know that you are going to finish and that was what you set out to do."
    -- Michael Pate, "When Big Boys Tri"

  7. #7
    Join Date
    Apr 2006
    Location
    Seattle
    Posts
    8,548
    thanks for the blood type info.
    There was a movement a few years ago that got very popular. it was the blood type diet. And for us O's, wheat was verbotin. But there are a lot of people
    still on that diet and there are LOTS of recipes on line for you to look for.
    But I wouldn't try cream of wheat if I were you. It's made out of the same
    stuff as white bread! WHEAT!

    I forget why oats are bad too, I think they are too close to wheat genetically!
    Mimi Team TE BIANCHISTA
    for six tanks of gas you could have bought a bike.

  8. #8
    Join Date
    Jan 2006
    Location
    Massachusetts
    Posts
    2,559
    I know someone with Celiacs who makes her own bread out of non-wheat grains. It can be done.
    Oil is good, grease is better.

    2007 Peter Mooney w/S&S couplers/Terry Butterfly
    1993 Bridgestone MB-3/Avocet O2 Air 40W
    1980 Columbus Frame with 1970 Campy parts
    1954 Raleigh 3-speed/Brooks B72

  9. #9
    Join Date
    Jun 2006
    Location
    Colorado
    Posts
    425
    I'm sorry! I have a friend of a friend who has been diagnosed with Celiac, along with her two children. When she first found out she was angry and frustrated, but over time she's accepted it and even turned it into a business. She started a company making gluten free desserts (and they are fabulous, mostly chocolate stuff). She even figured out how to make cookies using a blend of different flours. She also dropped about 30 pounds from her petite frame after discovering this, even while taking pastry chef classes. If you have a Whole Foods nearby, they have nutrition specialists (I don't know how certified they are) who will consult with you on things you can and can't eat within the store, highlighting gluten free alternatives.

    Good luck!
    The best part about going up hills is riding back down!

  10. #10
    Join Date
    Oct 2006
    Location
    Allentown, PA
    Posts
    587
    But I wouldn't try cream of wheat if I were you.
    Oops, I meant to type cream of RICE.
    ~ Susie

    "Keep plugging along. The finish line is getting closer with every step. When you see it, you won't remember that you are hurting, that anything has gone wrong, or just how slow or fast you are.
    You will just know that you are going to finish and that was what you set out to do."
    -- Michael Pate, "When Big Boys Tri"

  11. #11
    Join Date
    Apr 2005
    Location
    Asheville, NC
    Posts
    680
    *one handed typing...so i keep it brief

    celiac is not so bad at all...once you get used to the brands and all! my cousins 4 year old has it along with diabetes...he is one ACTIVE soccer player and can run circles around most kids! my boss has it too...i used to do her shopping and after a few trips to the store i was a wheat-free pro!

    many restaurants have wheat-free menus...just ask! yes, some things are more expensive but once you get the hang of what you like you can balance the budget to adjust i guess. now take a deep breath and start here...

    http://www.livingwithout.com/welcome.htm

    http://www.google.com/search?q=glute...en-US:official


    you will get thru this and feel soooo much better soon!!! ride on!!!
    I am a nobody; nobody is perfect, and therefore I am perfect.

  12. #12
    Join Date
    Feb 2006
    Location
    Aberystwyth, Wales
    Posts
    659
    Initial disclaimer: I do not have celiac's and have not had to eliminate wheat....

    But I do cook a lot and like you, love bread and other starchy foods. So I tried to think of a few alternatives.

    Tortillas made with corn flower should be ok. And you can use them to make wraps instead of sandwiches. In Norway we have lefse made with potato which can be made using potato flower instead of real flower. Works like a tortilla basically but a bit thicker. Also a good way to use up leftover mashed potato if you ever have any.

    Being from Northern Europe, I'm big on potatoes. We use potatoes with every meal (my dad insists it's not dinner if it doesn't have potatoes and will even have potatoes with his spagetti bolognese). And they can be used in a very wide variety of ways! If you want potato recipies, just let me know.....

  13. #13
    Join Date
    Dec 2006
    Posts
    1

    living with celiac

    It is not the end of pasta, bread, pancakes, waffles etc! Hardly!
    Replace those beloved foods with rice & other starch based ingredients.
    Go to Whole Foods if you can, check out their freezer section, GF foods. Excellent breads, scones, cookies, muffins.
    Find health food stores in your area.
    Shop online for mixes and foods. Check out shopbydiet.com or glutenfree.com.
    Buy Pamela's baking mixes. These are awesome.
    Glutino is another brand that has great snack (carb) items.
    Pick up the current Living Without magazine (or order online). They have a list of great restaurants - both chains nationwide and local states/areas - that know how to serve GF customers.
    This will get easier and you may be surprised at the amount of food out there, and how good it is. Your tastebuds will adjust and you will feel unbelievably better.

  14. #14
    Join Date
    Jun 2002
    Location
    Mrs. KnottedYet
    Posts
    8,975
    You are not alone. Knotted has it, and she has not eaten wheat in about 6 years. It's not that hard to do, you just have to be alert.

    Knott says to send her a PM, she's giving me a massage right now and says she'll get back to you soon.
    Custom Road bike ~ Mondonico Futura Legero
    Found on the road ~ Motobecane Mixte
    N+1 new bike ~ Salsa Vaya
    Commuter ~ Soma Buena Vista Mixte

    http://madeinusareviews.blogspot.com/

  15. #15
    Join Date
    Jan 2005
    Location
    Vernon, British Columbia
    Posts
    2,226
    Hi, OTG

    I'm sorry about your diagnosis, but glad for you at the same time. I, too, have had a recent diagnosis. In retrospect, I may have preferred celiac, as at least I would know immediately what to not eat. With Crohn's it's anyone's guess. It's going to take me some time to figure out what I can and can't eat and to understand this disease!

    I know people who eat gluten-free, and often, I've surprised myself by choosing, based on flavour, gluten-free products myself. You'll do okay, really! There are lots of sources of carbs, including rice, corn, potatoes, and some interesting grains like quinoa.

    As for carbo-loading - well, it's never really worked for me. Pasta, I think, has never gotten the energy to me when I wanted it. Potatoes, along with some kind of protein, has been the most fabulous energy food for me, for years! It was my favourite meal between laps during 24 hour racing, and also my favourite after-heavy-workout recovery food - whether that was after a long hard ride, or kickboxing.

    If you want to chat about how you feel about your diagnosis, feel free to PM me. I'm new to this, too, and you may be surprised at some of your emotions!

    Hugs,
    ~T~
    The butterflies are within you.

    My photos: http://www.flickr.com/photos/picsiechick/

    Buy my photos: http://www.picsiechick.com

 

 

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