Diagnosed with celiac (can't eat wheat)

[Offthegrid]

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.

[Bikingmomof3]

(((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.

[mimitabby]

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

[mimitabby]

out of curiosity, would you mind telling me if you have type O blood?

[velogirl]

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?

[Offthegrid]

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.

[eclectic]

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).

Wow - what we don't learn on this great forum! I have been fighting chronic asthma for the last 2 years. It is never very bad but is always there. After a multitude of tests, catscans, xrays, medicine - it is still the same.

I read this post and a light came on. for the last few days I haven't been eating anything that is made from wheat and guess what? my breathing is better.

I ate part of a flour tortilla yesterday and the old feeling came back.
I ate some cake and 2 cookies and there was no problem - DARN! ! !
After the New Year I am going to go off all wheat for 2 weeks then introduce some back in and see what happens.

After reading this and calling her I discovered my mom quit eating whole wheat hot cereal years ago because it triggered her asthma - now why didn't she tell me that sooner before I spent $$$$ on all the tests ????

for the past 2 summers I told everyone - "Just you wait - if I can ever breathe I will kick butt going up hills" This summer I just may be able to do it!

What kind of sucks is my dad's a wheat farmer

[skicliffs]

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.

[Trek420]

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.

[LBTC]

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~

[KnottedYet]

Are you on B12 shots or B12 sublingual?

I'm on sublingual, mainly because it's a whole lot cheaper than the shots. Methylcobalamine works better for me than cyanocobalamine (both are variants of B12, but methyl costs about 2x as much) If I accidentally eat some wheat and start getting sick I take an extra one. Maybe it's my imagination, but the extra one seems to help.

Once you know what to look for, it's second nature to keep away from the wheat. Especially once your tastebuds learn the association between that yummy garlic bread and being sick for days afterwards!

Eating out is a little harder, but oh so doable. Thai food is my favorite, and luckily wheat isn't an issue there.

I'm willing to suffer for beer... Suffering right now with a Boont Amber Ale!

My favorite brownie mix is Cravings Place Oooey Gooey Brownies. Their chocolate chip cookie mix is good, too. Best pizza dough mix I've found is Namaste Foods. (actually, Namaste's brownie mix isn't bad, either.) They've got a pancake mix I want to try.

You can still eat pasta to carbo load, just make sure it's rice pasta. I get mine in the asian foods section of the store, it's about 1/10 the price for the same noodles as in the GF/health food section.

Rice crackers instead of wheat crackers. Rice cakes instead of toast. Rice bread s*cks in my opinion, but there is a bread company <Ezekial Bread?> that makes a GF bread with ground pecans that is really good. It comes frozen, so you just toast a piece when you want it and it lasts in the freezer for weeks.

For energy on the bike I eat Clif Shot Bloks and Lara Bars. (Clif bars have oats, and oats do make me sick.) I usually keep a couple Lara Bars with me in case I get hungry.

PM me if you'd like!

[tattiefritter]

I don't have coeliac (my aunt had something similar as a child but outgrew it apparently) and the advice given above is what would immediately spring to mind anyway. As she couldn't eat wheat she used to get a lot of wheat free stuff on prescription (free I think). She absolutely hated the bread with a passion, my mother on the other hand (not wheat intolerant) loved it.

I have a breadmaker as I think shop brought bread is crap (and full of god knows what) and it has a setting to make gluten free bread. It mentions some gluten free breadmixes that you can buy (at least in the UK) though I have never tried them. A friend of mine was avoiding wheat for quite a while and I'm sure she used to eat rye bread and was investigating using spelt flour to make bread. Both rye and spelt flours seem to be easily available in large supermarkets in the UK.

Edit: was in supermarket at lunchtime to pick a few things up and looked at the various flours on offer. Spelt is made from an ancient wheat variety, didn't say anything about gluten levels (the rye is apparently low gluten). I'm quite shocked at that as my wheat avoiding friend was going on about it. They had gram flour which was wheat free but not sure what you could do with it.

[gardinsa]

Hello,

Try not to get too down about the diagnosis. I learned that I have gluten-intolerance/celiac two years ago, and the diet is very manageable once you have the information on which foods to avoid and where to find the carbs that you can have. Acclimating to celiac requires:
1) learning the list of ingredients/foods to avoid
2) proper planning (ie packing of lunches, etc).
3) a bit more hunting at Whole foods/specialty stores/websites for your allowed carbs and paying a bit more $$ for these foods

At the end of the day, the extra efforts and planning will pay off, because you will feel fabulous on a GF diet. Who knows, athletic performance could improve once you are absorbing your food again. Mine did.

In terms of carbs, you don't have to give them up. Substitute flour derived from wheat with flour derived from rice, corn, garbanzo beans, tapioca, etc. These flours can be purchased in most stores (even major grocery store chains). For a bit more money, purchase pasta dervied from rice or corn (again, sold almost anywhere). Most these pasta brands taste great. There are numerous brands of chips that individuals with celiac disease are permitted to eat (just read the labels carefully). And you don't have to give up cereals or english muffins...just find gluten-free section of the market.

Keep your chin up.
S