Shopping & Riding with Celiacs

Fogerson

Former Resident Nerd
*Jumping up and down*
Yes, yes!! It is significant. It's simple sugar and burns like hershey's. It leaves you at a deficit. I'll bet those higher carb counts don't add fiber, just sugars which are easily converted to fat.. read empty calories.

If it's complex carbs, they are real food and will fuel you longer. With simple sugars, you'll need a nap as soon as you burn the energy.

zzzzzzzzzzzzzzzzzzzzzzzzzz


Doing some more math, prior, it looks like 4% of my carb intake was dietary sugars. Now, it is 11%...a 7% deficit compared to my previous diet for dietary fiber and other carbohydrates.

Furthermore that works out to be about 25g less dietary fiber and other carbs (and 25g more dietary sugar)...every day.

Is that 25g a day really making a difference whether I'm feeling fine or my ass is dragging?

OTOH, over the four days since I rode last, that is 100g less carbs available to store as it is getting smoked as it is sugar now.

Seems significant, but could that really have caused issues resulting in my bailing out today?

BTW, my wife just brought home some Larabars. The cherry pie is good...tastes like a fruit rollup with nuts :) But just like the other GF foods I've bought, putting it up against my beloved Nature Valley Fruit and Nut bars yields a MUCH higher calorie and dietary sugar count...

It is looking like the "just swap what you eat now with a GF version strategy" may need some tweaking...

Well, gotta' get my poop-in-a-group and get to the GI doc (no pun intended ;))
 

Norm

Mayor McCheese
Team MTBNJ Halter's
I don't think 7g nor 25g is going to give you the Ass Dragging that you've been experiencing. I think you just need to figure out what works for you. It may take a while but I'm certainly interested how it all plays out.
 

Cyclopath

Shop Owner / Employee
Shop Keep
25g less dietary fiber and other carbs (and 25g more dietary sugar)...every day. Is that 25g a day really making a difference whether I'm feeling fine or my ass is dragging?

OTOH, over the four days since I rode last, that is 100g less carbs available to store as it is getting smoked as it is sugar now.

Seems significant, but could that really have caused issues resulting in my bailing out today?

That would depend on how your body processes the sugar.
For me, it would be equal to eating a cup of ice cream each day, which would be significant and would zap any potential energy from me quite literally, for days.

Are you really smoking the carbs? Is your activity level the same?
Swapping out is tough. It's ice cream vs apples... only you can know how your body will react.

If I do put those additional carbs in as broccoli or apples I would have a positive offset in strength, clarity and overall well being. But that's me and how I process such things. Your mileage may vary;-)
 

Fogerson

Former Resident Nerd
Cyclopath: Actually my activity level has dropped because of my ass-dragging lately.

Anyway,

Went to the GI doc and he convinced me that I need to have the biopsy done on my small intestine. He has clearly had this argument before. Bottom line is that with my particular blood test results there is only a little over a percent chance I don't have Celiacs. GF for life, he convinced me that I need to be 100%. And, if my symptoms improve GF, that is not a smoking gun. The change in diet, or other things that could cause my symptoms, could cause my symptoms improve over the next month.

Anyway, so in a week and a half I get to swallow a tube. I also have to go back to my regular diet until then. Oh well, I've learned some things this week so it's all good.

With all that, all there was left to do was grab a bag of Doritos on the way home from the docs office:getsome: Urp!! Maybe that wasn't such a good idea... I still see a week of gluten gluttonany coming...
 

Cyclopath

Shop Owner / Employee
Shop Keep
Pasta up, my friend! Have a few for me while you're at it.
And look on the bright side, you've got free license to consume lots of beer over the next week... oh yeah, you don't drink beer. Fear not, we've got it under control. We'll consume it in your honor.... We'll get Anrothar to schedule the party!

So, what did the Doc say about the chronic butt drag?
 

Fogerson

Former Resident Nerd
Pasta up, my friend! Have a few for me while you're at it.
And look on the bright side, you've got free license to consume lots of beer over the next week... oh yeah, you don't drink beer. Fear not, we've got it under control. We'll consume it in your honor.... We'll get Anrothar to schedule the party!

So, what did the Doc say about the chronic butt drag?

I appreciate your consumption in my honor! My upper endoscopy is on the 10th, so that means that I'll still be able to consume gluten at Sean's BBQ on the 8th. I guess it'll be more than Anrothar's last stand :) Honestly, I'll just be happy if I'm feeling strong enough to attempt to keep up with Sean at Mahlon earlier in the day.

The doc answered my query about the butt drag by saying it is tough to say given my "suspected" absorption problem...kinda' all bets are off. So he had his nurse draw a couple of gallons of blood out of me. He wants to check iron, various vitamin levels (e.g. A, D, B12), etc. It will be very interesting to see the results of these tests given that I was feeling very blah. Had I not been in a "blah phase", I think they'd be less interesting. It is fortunate--it is kind of like an intermittent problem with your car actually happening when the shop tests drives it.

Oh, btw, some of the symptoms that were improving on the GF diet have came back with a vengeance last evening and this AM. Just like that. Of course, I probably slammed more of Casa Mia's low carb pizza than I should've.

Tim
 

pixychick

JORBA: Ringwood
JORBA.ORG
Foge -Thanks for sharing as this thread has been very enlightening. My Aunt has just been diagnosed also, but she is inactive and elderly, and may be dealing with different issues. It is amazing how food effects us all, and how we depend on our bodies do the work. Good luck, and I hope you find an acceptable solution.
 

Fogerson

Former Resident Nerd
Foge -Thanks for sharing as this thread has been very enlightening. My Aunt has just been diagnosed also, but she is inactive and elderly, and may be dealing with different issues. It is amazing how food effects us all, and how we depend on our bodies do the work. Good luck, and I hope you find an acceptable solution.

You're welcome and thanks.

Celiac's is an interesting disease and it highlights just how different everyone is relative to how their body reacts to what they do and don't eat.

I've spent a LOT of time over the last week researching (as you might imagine) and the symptoms of Celiac's range from nothing to utterly debilitating. Feeling blah, to acutely ill. "Plogged up to free flowing". All because absorption is screwed up to varying degrees in the small intestine.

Wish your aunt the best of luck for me. In the end I think I'm going to be lucky as going GF isn't a big stretch for me...I just need to make sure the entire nutrition spectrum is balanced. 10, 15, 20, or more years ago, it would've been much harder for me. It is funny, over the years I've slowly gravitated towards less gluten in my diet.

Tim
 

Fogerson

Former Resident Nerd
Well, sh!t!

'Just got back from the doc and quite surprisingly the biopsy of my small intestine was *fine*! :hmmm:

Let's recap for the folks who just joined in:
  • I've developed a few chronic GI issues...and have had intermittent ones in the past.
  • Some days I just feel "blah". And it has gotten worse lately...
  • Some days when I ride, I have trouble recovering. And it has gotten worse lately...
  • The doc ran a Celiac's panel; I railed it. The "most critical" antigen, tTG, is an indicator with a 99% probability for Celiacs.
  • To confirm the diagnosis, the standard of care requires and upper endoscopy with a biopsy of the small intestine. After the endoscopy the doc told me that the wall of the small intestine looked "smoother than normal", which again, is consistent with blunted villi that come with Celiac's.
  • And as stated earlier, the small biopsy came back normal.
Okay, so my question to the doc was, obviously, WTF (literally)?

Well, it could still be Celiac's and it just so happens that the upper part of the small intestine is okay and it's goobered up along the remaining 20 feet of it. However, the upper part of the small intestine is usually where the damage is the worse. So, now he has changed his "working diagnosis" to irritable bowel syndrome (which would explain the GI issues). But what about the ass dragging and recovery problems?

Well...

He ran a bunch of blood tests to see if there were absorption or other nutrient related issues there. Everything was normal, EXCEPT I have an iron deficiency.

Hooray, I thought!!! Though it is unknown why I have this iron deficiency (trust me, it ain't because of my diet), that'd explain my ass dragging and recovery issues!! Uh, NO!!!!

Iron deficiency leads to low red blood cell counts, which can result in the ass dragging and recovery problems. But, my RBC counts are actually ABOVE normal!!! They always have been actually...

Sigh...

So here I sit with several contradictory pieces of evidence. Now what? The real fun starts now. They took a couple of gallons more blood out of me and are re-running *everything*...celiac's panel, vitamin, blah, blah, blah...

I also get to swallow one of those capsule cameras so the entire small intestine can be looked at. At least this is cool. I'll also get to have an encounter with another camera that isn't quite as cool:(. Oh, I get to swallow some other stuff for a full set of Xrays. Oh joy, oh joy, oh joy!

I'm getting the feeling that it would've just been easier if the biopsy was positive and I spent the next 30-40 years of my life gluten-free...

Yippee-ki-yi-yea mother f***er....
 
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Cyclopath

Shop Owner / Employee
Shop Keep
Sorry you didn't get an answer, Tim.
Problems always seem easier to deal with when you know the reason and get the handbook to deal with them. Well, here's to hoping it's lactose intolerance with a twist of peanut allergy.

But look on the bright side, beer is back on the approved list.
Come to think of it... I'll bet that's precisely your problem.
Not enough beer in your diet! Let's take care of that crap right away!!
 
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Norm

Mayor McCheese
Team MTBNJ Halter's
Damn Tim, can't catch a break here. Keep the old head up and I'm sure things will right themselves, just not the direction you had hoped. One door closes another opens and so on.
 

Fogerson

Former Resident Nerd
Sorry you didn't get an answer, Tim.
Problems always seem easier to deal with when you know the reason and get the handbook to deal with them. Well, here's to hoping it's lactose intolerance with a twist of peanut allergy.

But look on the bright side, beer is back on the approved list.
Come to think of it... I'll bet that's precisely your problem.
Not enough beer in your diet! Let's take care of that crap right away!!

0 beer in my diet could indeed be the problem. Maybe I should start drinking...
 

Fogerson

Former Resident Nerd
Damn Tim, can't catch a break here. Keep the old head up and I'm sure things will right themselves, just not the direction you had hoped. One door closes another opens and so on.

Thanks.

I still think when the dust settles it will be Celiac's. I did some more reading and a positive biopsy confirms Celiac's, but a negative doesn't mean I don't have it. Not that I really want Celiac's, but it is the only thing that makes sense (at the moment).

By the time I can get all of the testing done, it is gonna' be a month or more from now.

:hmmm:If I do have Celiac's, or any gluten problem for that matter, the problems will be gone by then if I go gluten-free now. Maybe I should just go for it...
 

Cyclopath

Shop Owner / Employee
Shop Keep
:hmmm:If I do have Celiac's, or any gluten problem for that matter, the problems will be gone by then if I go gluten-free now. Maybe I should just go for it...

You've got nothing to loose by going gluten free now. So, go for it!

But to err on the side of caution, I recommend tossing a few cold ones back first!! :D
 

Fogerson

Former Resident Nerd
You've got nothing to loose by going gluten free now. So, go for it!

But to err on the side of caution, I recommend tossing a few cold ones back first!! :D

The only reason not too would be that I would never have a confirmed diagnosis if everything went away gluten-free. Not sure what the value of that would be to me. You can deduct from your taxes the delta between what a gluten-free diet costs and a "regular" one as a medical expense with the proper documentation; but it wouldn't be enough to make a difference.

Hmmm....

Okay, I've been in engineering too long...here is a reason I may not want to go gluten-free...

If I go gluten-free, and the symptoms were to vanish, would it be because of the lack of gluten or something else associated with the dietary changes? We've already established that gluten-free food isn't exactly like it's gluten-laced equivalent, sans gluten. Or, it could be something else entirely and coincidentally that something vanishes. Which would all mean I end up with the hassle and expense of being gluten free for the rest of my life...yet it could be unnecessary.

In essence, I'm betting that I have Celiac's disease. If I win, I'm a month ahead of the game. If I loose, I'm gluten-free for the rest of my life when I don't need to be (unless I decide to go back on gluten to see if symptoms return, which would mean I'd be better off not going gluten free now). The only way out of this conundrum is if the symptoms don't improve (which would really suck, I think) or I just keep gobbling up the gluten.

'think I need to sleep on this...
 

Norm

Mayor McCheese
Team MTBNJ Halter's
I think you're overthinking it. So sleeping on it is a good idea, as long as you don't lose sleep over it, seriously.

IMO do nothing until at least Monday.
 

Cyclopath

Shop Owner / Employee
Shop Keep
I think you're overthinking it.

What he said.
I think I had something else to say, but following your train of thought got all my neurotransmitters mis-firing.

Anyway, just cause I've nothing else to do this minute but sleep...

My daughter used to have major eczema and asthmatic attacks which sent her to the emergency room on more than a few occasions, starting as young as 4. The doctors said "asthma, here's the nebulizer". My Sis in-law, a head nurse at CHOP, said "There's a typical triad; Eczema, Asthma and allergies and they're all related." Knowing that we tend to crave things to which we are allergic, and not wanting to put my little girl through a barrage of allergy testing unless absolutely necessary, I thought of Shannon's diet and came up with the highest suspects based on common allergens, cravings and their occurrence in her diet. I came up with the three highest probabilities... nuts, eggs and strawberries. All were prevalent foods for her and all are common allergens.

So I removed the most probable, nuts, which she loved and would climb on the counter and eat out of the mixed nut jar with two hands. We lucked out. A few weeks went by and the Eczema which she had for years started healing. A bit later the pigment returned to her arms. We found that her breathing issues only happened if she got a cold while she had signs of eczema or rashes(the beginning stage of eczema) on her arms. A cold with rashes would almost guarantee a trip to the emergency room, a cold without rashes would have no effect. Furthermore, she had a latent and non-anaphylactic response to nut exposure and would not show signs of nut exposure(rashes) for three to five days after touching/eating them.

All this made for an extremely difficult diagnosis, but one that I think doctors would have had even more trouble than I did in tracking down. Do I have a definitive diagnosis that she has a nut allergy? No, but if she eats nuts(which she still loves and chooses to sneak on occasion) she gets rashes... (uhmm, that's good enough for me). When we see the rashes we know that if she gets a cold, she may need the nebulizer. No cold, no nebulizer. It's like a built in early warning system.

Do we know which particular nuts affect her? No, but she has had definite issues with peanuts as well as with tree nuts and it's just not worth playing with them to find out which nut is which. Someday, if she chooses, she can have the testing done for each possible allergen. For now, there's too many other food options available to bother dwelling on what she can't have.

For Shannon, if I just accepted the diagnosis of Asthma, I'd have a little girl covered with itchy, unsightly rashes with multiple patches of lost pigmentation. She'd have periodic ambulance trips to the ER in the middle of the night in breathing distress. She'd be less confident and more unsure of herself because of her health. She'd never go anywhere without an inhaler and emergency phone #'s up the wazoo.

So, my point I guess is, Good luck and persevere. I hope they can point in a specific direction but if they don't, all is not lost.

If it is a food sensitivity, the doctors may never come to the right allergen.
But you might stumble upon it by making your list of suspects and eliminating them as you see fit. Weigh whatever diagnosis you get and trust that your suspicions may just be your body telling you what it needs and what it really should not have.

You may just know you best.
 
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Fogerson

Former Resident Nerd
The fun continues...

Well, after another couple of tests we've come up with *more* contradictory results...

There was a positive celiac's panel, yet the small intestine biopsy was negative.

I'm iron deficient, yet my RBC count is a little high.

And now I've had a full gi series (swallow barium and spend a couple of hours with a fluoroscope) and a camera put where the sun don't shine.

And guess what?

The full gi series said there was a problem, yet when investigated with the camera today, it was normal.

Sigh...

Anyway, the most interesting thing is that it appears my doc is about to punt and call it Celiac's without a "smoking gun". He is gonna' go over all of the data again before we sync up the end of next week, but he said we're at the point where we'll probably go gluten-free and see what happens.

This is significant as this guy's position prior to the latest testing was to stay the course until we have a smoking gun. After 1+ months of tests with ping-ponging results, I guess I've beat him down :( And I've found myself right where I was several months ago; let's go gluten-free and see what happens.

I guess the good news in all this is that with the poking & prodding I've gone through, it seems very unlikely that there is something *really bad* lurking in my digestive tract.
 
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