Shopping & Riding with Celiacs

Fogerson

Former Resident Nerd
Celiac's it is...

As expected the doc's diagnosis is Celiacs. Though he didn't get what he expected in some of the tests, the latest batch show a clear pattern of malabsorption. I'm deficient in a handful of vitamins/nutrients and barely within normal range on some others. That, some evidence of malabsorption in the gi series, and a second positive result on a Celiac's panel is what he is basing his call on.

He is chalking the negative small intestine biopsy up to sampling error. He feels given the levels of malabsorption we've caught this thing early as far as symptomatic behavior goes.

The thing that made today interesting was a particular blood test that said my blood's clotting ability is abnormal. It seems odd to me as I don't *think* I bleed an abnormal amount when I cut or scrape myself. In the end, it wasn't terribly scary as I'm also vitamin K deficient...which easily explains it. And, btw, not unusual in untreated Celiac patients.

So, he sent me to the hospital to get a vitamin K shot. Apparently, this is not something doctors offices have laying around. I've never waited around so much for a freakin' shot.

So now I go on a gluten free diet and see if all this ugliness vanishes over the next month.
 

Fogerson

Former Resident Nerd
Gluten-free, day 5...

...'been feeling like crap the last three days...just like when I tried going GF a couple of months back.

Not extreme changes to my diet, actually. Maybe my body just needs to adjust.

Gah!
 

Fogerson

Former Resident Nerd

Thanks!

I certainly plan on trying it out soon. Hopefully, it won't taste like cardboard with sauce 'n cheese on it. Then again, around where I live most of the regular pizza is like that. If it wasn't for Casa Mia low-carb (uber-thin crust) pizza in Sparta I'd given up pizza way before my celiacs diagnosis :)

I'm on day 10 of my gluten-free diet. Nothing is improving yet and I still feel crappy. In fact, I abandoned my road ride yesterday (10 miles in) when I found I was struggling to keep my average speed at 17 mph, whereas I'm usually averaging a little over 20 mph (without trying too hard) by that point in that particular ride. My legs were burnin' on the flats, they where making no power, and it felt like my brakes were dragging. Dunno' if that was the Celiac's or the gluten-free diet...
 

MixMastaMM

Team Bulldog Rider
Thanks!

I certainly plan on trying it out soon. Hopefully, it won't taste like cardboard with sauce 'n cheese on it. Then again, around where I live most of the regular pizza is like that. If it wasn't for Casa Mia low-carb (uber-thin crust) pizza in Sparta I'd given up pizza way before my celiacs diagnosis :)

I'm on day 10 of my gluten-free diet. Nothing is improving yet and I still feel crappy. In fact, I abandoned my road ride yesterday (10 miles in) when I found I was struggling to keep my average speed at 17 mph, whereas I'm usually averaging a little over 20 mph (without trying too hard) by that point in that particular ride. My legs were burnin' on the flats, they where making no power, and it felt like my brakes were dragging. Dunno' if that was the Celiac's or the gluten-free diet...


Bummer. I have found mixing up a glass of Whey protein after a ride helps me to recover and feel good the next day. Have you tried sitting with your legs elevated? That also helped. Who knows, to each his own.
 

Fogerson

Former Resident Nerd
Bummer. I have found mixing up a glass of Whey protein after a ride helps me to recover and feel good the next day. Have you tried sitting with your legs elevated? That also helped. Who knows, to each his own.

I'm pretty sure my problem yesterday had to do with the gluten-free diet as I've felt crappy all week. My body is probably still adjusting to it, or I need to do some more adjusting to the diet.

There is certainly a significant difference in the amount/type of carbohydrates going into my system. The ratio of dietary sugar to complex carbohydrates is different with gluten-free stuff. 'Spending a lot of time researching to find tweaks and alternatives...'might have to punt soon and find a nutritionist who specializes in GF diets. Or perhaps, my body will adapt and all will be good. We'll see...

I figure I'll be chasing my tail for most of this month because my absorption s/b changing as things heal up so it may be a bit of a moving target.

I'll pick up some Whey protein as well, certainly wouldn't hurt...if nothing else, it'll help when I'm "healed" and start upping (establish?) my training regimen...
 
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Norm

Mayor McCheese
Team MTBNJ Halter's
I use whey protein, this is the one I've found that works best for me:
EAS

I would say vanilla is better tasting than chocolate. What I mean by "works for me" is how it reacts to my stomach. Or to put it better, doesn't react. Apparently some people have a lot of trouble with protein drinks. The EAS stuff is also pretty available, both Shop Rite and Stop/Shop have it.
 

Fogerson

Former Resident Nerd
Gluten-free, One Month In...

Hello All.

Well, up through week three of being gluten-free I was getting quite discouraged. I was seeing some improvement, but not a lot.

Then came week four...
  • Only one "blah" day in the last 1.5 weeks. And I don't even think I can really call it a "blah" day. Every time in the past that I've tried to ride on a blah day, it resulted in a waste-of-a-ride; my legs would be weak, I would have zero endurance, a miserable waste of time. My "blah" day this week was different. I was able to get my butt on the road bike (which is a huge accomplishment when I feel like this)...then I smoked off the fastest 19 miles on my BVR out-and-back that I've ever done (58 minutes). My average speed was a solid 1.2 mph faster than the fastest I've ridden that route, "good" days included. Clearly, the "blah" was a different "blah"...I don't think the Celiac's caused that blah....maybe I didn't sleep well or somethin'.
  • I've ridden six out of the last seven days. There is *no* way I could've done that a month ago.
  • I've ridden about 175 combined road/mtn miles over the last two weeks. At no point in those 175 miles, some of which were pretty hard rides for me, did I have the on-ride recovery problem! I had some day-to-day recovery problems, but in hindsight, they probably were just normal given my level of conditioning.
  • My GI issues have been improving, but today is the first day in months and months everything was completely NORMAL! 1 day is not a trend, but it is clear evidence that we're getting there.
So there you have it. All evidence is pointing to the fact Celiacs was the right diagnosis and I have a handle on the gluten-free thing. I just hope the trend continues and in a few more weeks I can allow myself to claim success.

I want to thank all of you who gave me words of encouragement, sent me valuable information, and listened to my whining.

Game on, kids :getsome:
 

Cyclopath

Shop Owner / Employee
Shop Keep
I want to thank all of you who gave me words of encouragement, sent me valuable information, and listened to my whining.

Ah, Tim, anytime... you're so cute when you whine. :rolleyes:

I'm really glad you're feeling better, cause you had a real rough go of it but I hope this good is 'for good'.

And +1 on the EAS vanilla whey protein, though I can't stomach the taste too well either, so I add some pure unsweetened cocoa powder and use Almond Breeze for the fluid base, makes it almost tasty. Pricey, but ya' gotta do what'ca gotta do.

After all, I found out that the soy milk and soy based proteins weren't doing my system any favors either. Trader Joe's has the best price on the Almond milk.
 

Fogerson

Former Resident Nerd
I've been using the EAS...not sure if it is doing anything, but I've been using it.

I've found that mixing the vanilla with milk, instead of water, makes it taste just fine.
 

Fogerson

Former Resident Nerd
Gluten-free is the way for me!

'Had my yearly physical last week and the doc ran a bunch of blood tests.

After 5 months of being gluten-free, all of my blood work is absolutely normal. No deficiency this or that...normal.

The only thing odd was my LDL cholesterol (the bad stuff) is what my total cholesterol used to be. My HDL (the good stuff) is out of the "jeezus that's low" range. It makes sense considering that my body absorbs normally now. It also tells me that this Celiac's thing has been a problem for a long time, eventhough for 43 years of my life I was mostly asymptomatic. My cholesterol was always really low...until now.

Now when y'all kick my ass out on the trails, I don't have any excuses other than being old, fat, and out of shape :D
 

Cyclopath

Shop Owner / Employee
Shop Keep
That's excellent, Tim!

I'm glad you found out what was bugging you.
If I remember correctly, it was your own suspicion that led you to question the gluten and not the suggestion of your doctor. Good thing you pursued it. If you remember how bad you used to feel I'll bet the new diet will be a breeze to stick with.

And I get to drink all your beer!:D
 

Fogerson

Former Resident Nerd
That's excellent, Tim!

I'm glad you found out what was bugging you.
If I remember correctly, it was your own suspicion that led you to question the gluten and not the suggestion of your doctor. Good thing you pursued it. If you remember how bad you used to feel I'll bet the new diet will be a breeze to stick with.

And I get to drink all your beer!:D

Actually, the gluten-free thing isn't bad at all when I'm not traveling. Even then, as long as I relegate myself to "boring" food it isn't to bad.

I haven't drank beer since 1989...so you'll have to find somebody to eat my donuts instead :D
 

Cyclopath

Shop Owner / Employee
Shop Keep
Donuts?!!
Is that all you've got for me? BAH!!!
I don't eat donuts.

Ah, well...
I'll let you know about those cookies when I get around to it.:D
 

VanDbtRiver

Well-Known Member
Yeah, grocery shopping has slowed a bit here all of a sudden. Some companies (like Kashi) make it easy; they have in bold letters saying things like "this product contains wheat, nuts, etc.". Others, well, not so easy...gotta' read the whole damn list. Too bad that Kashi doesn't seem to make anything I can eat.

add me to the list. I have had some enduring symptoms over the last several months and suspected it was a reaction to gluten. It was pretty much confirmed tonight as my dinner consisted of wheat beer and a kashi barley side dish that have me sprayin mud @3am. Next step, GI specialist.
 

Fogerson

Former Resident Nerd
add me to the list. I have had some enduring symptoms over the last several months and suspected it was a reaction to gluten. It was pretty much confirmed tonight as my dinner consisted of wheat beer and a kashi barley side dish that have me sprayin mud @3am. Next step, GI specialist.

Good luck. There are other things other than Celiacs that can cause such things (IBS, for instance). What are your other symptoms?
 

Mare

Well-Known Member
I just found this, and I didn't read everyone's reply, so if what I say was already said, sorry!

I was on a gluten-free diet for many years (luckily I reintroduced some stuff and I am ok with it, but GF is still tastey and not impossible to do).

I am a cereal-a-holic too! I live on cornflakes and puffed corn or puffed rice. Whole foods has their brand cornflakes that would be safe for you (I believe, but I will double check). There are plenty of cereals for you to eat, and plenty of other foods too, so you won't feel like you are missing out.

During rides, I hardly eat, but if I do, I always have a peanut butter sandwich on sprouted bread (FYI, if you have rye, wheat, or other trains that are sprouted, it is GF. I have a dehydrater, so I will make sprouted grain crackers with flaxseeds on that thing). I have honey in those GU flasks. LaraBars are fabulous! I bake cookies that are GF when I am oh so inclined. I also cut up apples and put that in my camelbak, but not all at once :)

I have tons of other input because I am a health freak, but I will save it until I know you want to hear it.

Since you put this original post up in May, how are you adjusting? I'll go read some of the thread now too to see if this is already answered :)
 

Cyclopath

Shop Owner / Employee
Shop Keep
Mare,
What gluten free cookies are good?
Would you share your recipe?
I promised to make some for a friend but all the recipes I found
call for adding wheat flour to the soy flour...
 

Fogerson

Former Resident Nerd
I just found this, and I didn't read everyone's reply, so if what I say was already said, sorry!

I was on a gluten-free diet for many years (luckily I reintroduced some stuff and I am ok with it, but GF is still tastey and not impossible to do).

I am a cereal-a-holic too! I live on cornflakes and puffed corn or puffed rice. Whole foods has their brand cornflakes that would be safe for you (I believe, but I will double check). There are plenty of cereals for you to eat, and plenty of other foods too, so you won't feel like you are missing out.

During rides, I hardly eat, but if I do, I always have a peanut butter sandwich on sprouted bread (FYI, if you have rye, wheat, or other trains that are sprouted, it is GF. I have a dehydrater, so I will make sprouted grain crackers with flaxseeds on that thing). I have honey in those GU flasks. LaraBars are fabulous! I bake cookies that are GF when I am oh so inclined. I also cut up apples and put that in my camelbak, but not all at once :)

I have tons of other input because I am a health freak, but I will save it until I know you want to hear it.

Since you put this original post up in May, how are you adjusting? I'll go read some of the thread now too to see if this is already answered :)

Five months gluten free and I'm doing well. Except for eating out, adjusting has been almost a non-event. All of the gory details are in the thread.

Hmmm...one of my worst rides when I was having trouble was with you (and the rest of the team) at KVSP for the pre-ride. That was a tough day!

I've tried a couple GF corn flakes...they suck. I don't think I've tried the Wholefoods brand.

I haven't found a bread I can stand yet; 'been told Tapioca based bread is the way to go but 'haven't gotten around to that yet.
 

Mare

Well-Known Member
Mare,
What gluten free cookies are good?
Would you share your recipe?
I promised to make some for a friend but all the recipes I found
call for adding wheat flour to the soy flour...

I will have to dig up my recipes. It's been a long time since I did make GF cookies, and I would probably want to make them again before I pass along a recipe with confidence. This will give me a reason to bake! I have these ones that are plain cookies that i put some honey on, then dip in coconut flakes. They are the best!! I suggest rice flour too.... it's lighter tasting and fluffier to work with. Soy can taste a bit harsh (which is probably why the want you to add other flours). I have also used quinoa flour, which is pretty good.
 
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