Diagnosed with celiac (can't eat wheat)

[LBTC]

Hi, Lynne!

I'm sorry for your diagnosis and severity, but glad that things are beginning to normalize for you. I do understand, having been diagnosed with Crohn's and still in the stage of trying to find drugs and food that work best for me. At this point I'm trying no grain other than rice, no pork, very limited sugar, no dairy (not even yogurt or cheese!), no yeast, very little alcohol, no tomatoes, onions, avocadoes, coconut or peanuts and trying to cook all vegetables. No question about it: this is *hard*, but I have discovered some great recipes that don't hurt, as I'm sure you have.

So here's my question: can you eat potatoes? dairy? My all time favourite energy and recovery food is a baked potato with some protein (used to do chopped ham & grated cheese) and some veggies. If I were to try this on the bike, I'd probably stick to baked or boiled chunks of potato. I've seen them pass these out at races, so I know it's not unheard of. You would, of course, have to enjoy potatoes and be able to eat them without aggravating your condition.

Cliffshots are made with brown rice syrup, and my favourite flavour, especially for the quick energy, is sonic strawberry (extra caffeine), and they have other flavours - you don't have to stick to orange flavour!

Have you tried electrolyte drops in your favourite drink? I found those helped a lot when we were snowshoeing this winter.

Have you considered that perhaps your body needs to heal more before you start riding longer? Right now, even though riding seems to hurt less than walking, I've barely been on my bike at all, only at slow speeds and for very short times (40 minutes). I'm convinced that if I truly get myself to heal and be healthier inside, that I'll regain the fitness and endurance I used to have. I sure hope so!

Good luck trying things!

Hugs & butterflies,
~T~

[KnottedYet]

We need to form a Celiac race team... There are enough of us on TE we could probably do it!

Lynne - I've found Clif Bloks, Clif Electrolyte, bananas, and Lara Bars to be my friends both on rides and races. (I eat only the Clif stuff during races, banana and bars are too much trouble then.) Even on days when my celiac is really grumpy, I can tolerate Bloks and Electrolyte. (sometimes that's what I'll eat for a meal if I'm feeling awful)

This is a long thread, with lots of good links. Feel free to PM me if you want!

[rocknrollgirl]

Hi Guys,
I am in the first few days of a one month trial wheat free. I am working with a nutritionist on this. My stomach is a mess, I have been scoped up and down, they did not find "anything" so they said IBS and sent me on my way. So 6 months later I am still a mess.

She took me off dairy first, they did not make such a difference, but 4 days of no wheat and I have not had a single pain. The real test will be in school this week.

I am having some energy issues. I have to replace my carbs, but I am working on it. My grocery store has lots of stuff.

[LBTC]

RnR girl, sorry to hear about your tummy troubles! Hopefully you can remove wheat from your diet and be good!! I'm just discovering some really wonderful choices - found english muffins made with rice flour - we're going to have burgers tonight so I can try these!

You'll find your solutions, and hopefully soon! PM me if you want to chat more. You might know that I'm still working out what I can and can't eat and what I should and shouldn't do.

Hugs and calm healing butterflies,
~T~

[eclectic]

I'm hopping on the wheat allergy boat here, too.

It's only been a few months since I found out, and as a student I cannot sustainably afford GF food.

I am also vegetarian--just to make it a little trickier.

Since I cut gluten, I have gained some serious pounds as it no longer HURTS to eat.

Think I'm just gonna suffer through the pain of wheat this summer, as there are no GF-friendly grocery stores near where I'll be living.

It's good to know what causes the pain, though, even if I'm not much in a position to rectify it!

How is your GF diet going, Offthegrid?

Hurting is not fun and there are other options as was pointed out.

the main thing I have found is I have to cook more. GF products are more expensive but if you don't buy the mixes and make stuff from scratch it is much more reasonable.
The GF bread is pricey but I found I eat less (I eat all my sandwiches open face now instead of 2 pieces)
Kinnickinnick makes a GREAT flax and sunflower bread that is very heavy so 1 slice is plenty (and only 90 cal)

At Walmart in the frozen food section I found some GF waffles 6 for $1.97 - no more than eggos! i put a little syrup, some banana and some walnuts on them Yum!

I love rice cakes w/ PB&J - I have to say I don't really miss bread up to this point. I use tostitos instead of crackers.

When I am tempted to eat wheat products I just think of how much better I can ride my bike up hills now

[eclectic]

Hi Guys,
I am in the first few days of a one month trial wheat free. I am working with a nutritionist on this. My stomach is a mess, I have been scoped up and down, they did not find "anything" so they said IBS and sent me on my way. So 6 months later I am still a mess.

She took me off dairy first, they did not make such a difference, but 4 days of no wheat and I have not had a single pain. The real test will be in school this week.

I am having some energy issues. I have to replace my carbs, but I am working on it. My grocery store has lots of stuff.

I bought a book on living with celiac disease and wheat allergies.
It was stated that in America Celiac is way under diagnosed and people are often sent home with the IBS diagnosis.
be sure to have them test you for celiac.
BTW read back on this post there are some great inexpensive ideas for carb replacement. It really isn't that hard.

[Dianyla]

But I've been cycling (a lot!!) through it all. The problem is that I run out of energy at the hour mark. For whatever reason, I can't seem to access those stores you get to after the hour mark. And I can't seem to find much to consume to get the serious energy I need. By that point one is well into 500+ calories an hour; a serious defecit!!!

<snip>

I tried Lara bars, but they seem to give me no energy.

Hey Lynne, long time no see! I've also been recently diagnosed with gluten intolerance, though fortunately it hadn't progressed to full-on celiac disease. I'm glad to hear you're on the road to recovery.

For heavy energy needs on-bike, Larabars just don't cut it for me either. Most of them are only about ~200 calories apiece, and I tend to burn out on them after a while. And besides, I can only ingest so much fiber on a ride before Bad Things Happen...

I actually just discovered a new energy source - mochi rice cakes. They are a soft dough cake made from glutinous rice and filled with different types of sweet vegetable or fruit paste. I just got back from a vacation to Japan where I had been snacking on them with wild abandon until a friend kindly mentioned to me "hey, you know those things are like 400 calories apiece, right?" Then he pointed out that they're so dense in calories Japanese marathon runners eat them for convenience energy foods. The light bulb went off and I realized that these would be perfect as a riding food.

There is an ice-cream filled variety that is quite tasty, but wouldn't be practical on-bike. The most common version of the is called daifuku and is filled with red bean paste. There are other flavors either in the dough or in the filling like green tea, lotus paste, fruit conserves, etc. They are often sold refrigerated but will last a few hours at room-temperature. Some varieties are stored and sold at room temperature, too. You can get them in Portland at Uwajimaya. Elsewhere, look for them in Japanese bakeries/confectioneries or asian food import stores. Or, if you have the time, there is a recipe here.

Granted, they are very gooey and sticky (be careful not to choke!) and they may not be to everyone's taste. But I thought I'd throw it out here as a suggestion. I'm particularly fond of the green tea (matcha) flavored ones, and if you can find the sesame-seed encrusted ones those add a nice crunchy texture to the rice cake.

[KnottedYet]

Just had a pretty decent gluten-free frozen pizza: Amy's Cheese Rice Crust pizza. $8 for an itty-bitty pizza that fed SKnot and I (and only cuz SKnot had a late lunch! He wasn't too hungry.). I've been making my own pizza with g-f crust mix, and I think my 'za is usually better, but the convenience of a frozen pizza is pretty nice. Had some Redbridge gluten-free beer with it.

Ahhh, pizza and beer...

[OakLeaf]

I actually just discovered a new energy source - mochi rice cakes.

Mmmmmmmm, I LOVE daifuku mochi! That is like my favorite dessert in the entire world.

Has anyone here tried to make them? I haven't quite dared, even though I know how much better the restaurant-made cakes taste, than the pre-packaged preservative-laden ones you get in the Asian markets. (I have made the sweet bean/agar paste which you can just cut into squares and eat plain. But kneading and steaming the mochi dough scares me)

[spindizzy]

Lots of great links and recipes on this thread. My son has celiac. Though I though it would be hard trying to get him to stay within his food boundaries, it was no problem - he feels so cruddy when he eats gluten.

I do need a bigger kitchen, I've got every gluten-free flour known to man. There's also a grain called Salba (you can buy it ground or seed). It's quite high in antioxidants, Omega 3 and fibre. Has some protien too! (I find it quite expensive)

I've also found a mill that makes uncontaminated oats and oat flour. Lara's whole grain oats and also flour. www.creamhillestates.com. (it's a Canadian company) My son hasn't had any problems with it, oatmeal in the morning, fruit crisps mmmm!

[KnottedYet]

ooh! I want oatmeal! Thanks for the link!

[KnottedYet]

I finally made tabouli using quinoa instead of bulgar wheat.

(I'd meant to for a very long time)

It works great! Use your favorite tabouli recipe (or non-recipe if you pretty much just wing it like I tend to). The only modification I made was that I found it needed more lemon juice and salt than I added at first.

The texture is just right!

And, oh man, the smell as I was chopping up that parsley... talk about swooning with delight! I'm just beside myself with gustatory glee. This works!

[three]

Just spotted this thread and thought some of you might want to know about the following place:

http://www.madwomanfoods.com/

They are an awesome local bakery that does ship nationally. They have yummy stuff (and I'm not on a restricted diet). It's a good place for getting delicious treats when you think you can no longer have them...

...and they are owned by my cycling buddy's parents! Super cool place. I know a lot of families with celiac children get cupcakes, birthday cakes, other yummy food from them. Hope it helps someone on here.

[Groundhog]

I'm reviving this old thread to add myself to the celiac club. Diagnosed two years ago in February...my re-birth day.

I'm very well adjusted to the diet (I cooked a lot pre-diagnosis, comes in handy now) but still haven't lost the 20 pounds I gained in the six months immediately prior to diagnosis. Hoping that commuting by bike 4-5 times a week will help me with that.