Diagnosed with celiac (can't eat wheat)

[run it, ride it]

True, true... it's probably just that dark defeatest just-before-exams part of me lamenting over the whole ordeal.

No homework will eat my life over the summer; just a mere 40-hour work week! Much as I will miss cereal and rice bread, I will have the TIME to cook.

And damn, I LOVE the taste of envelope glue! Now I'm gonna be the creeper going around asking people to lick my envelopes for me.

[KnottedYet]

don't eat library paste, bad plan.

and don't be nibblin' the wheat-glue off the posters on telephone poles, neither!

[Lynne]

I probably missed it because there were a lot of posts to read, but I'm wondering about ON THE BIKE energy. I'm diagnosed with Celiac (confirmed via biopsy, genetic testing and IgG marker testing)-very sensitive, unfortunately. Had to get my own toaster at work, can't bring my own crust to a pizza joint, etc.

I saw a lot of discussion about wheat, but Celiacs cannot have barley or rye either. Also, oats are not ok as most are grown and sorted/stored with wheat and thus are contaminated. (Had to go to Mayo because I was non-responsive-the theory is that non-responsive Celiacs have a higher incidence of a deadly form of cancer, so had to get that ruled out).

I was diagnosed last July and just got the news today that my IgG marker is now close to a normal person's. This means my body has just stopped attacking my intestine and now I can start healing.

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!!!

So, anyone here actually have Celiac and race? (not consuming wheat's tough-not consuming that plus barley, rye and oats is horrendous). If so, how do you get energy in while you ride? I'm set to try racing; how do you get calories while you race? What about distance riders? I'm set to try my first Century on Sunday and I'm sick to death of doing orange Gu and peanut butter nutrition bars (the only gluten free bars I can find). I tried Lara bars, but they seem to give me no energy.

Help!! I don't know any other serious cyclists who have Celiac, so I have no resources for the dangerous level of bonkage I'm getting into (I tend to forget where I am and how to get home when I bonk-and I bike alone a lot-so it's not just a matter of performance for me).

Thanks-I hope someone has some suggestions!

Lynne

ack!! Have to change my signature!! That was before I was diagnosed...I loved cheesecake and pizza. Yep, this has been difficult.

[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]

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!