extreme fatigue - cannot find the cause

Perhaps that guten sensitivity is your culprit. You do not need to have full blown celiac to have gluten intolerance.

As they say, the proof is in the pudding!

There have been numerous threads here about carbs in our diet,and as with moast things, tolerances vary among us. But, it seems rather contradictory that early in the post op period they tell you to load up on rice, bagels, potatoes, etc. This is mostly to add soluble fiber and bulk to the stools. But, what I and many others have found is that over time, the lower carb diet winds up being better tolerated. Part of it has to do with excessive carbs promoting bacterial overgrowth and/or diarrhea. Another issue turns out to be individual intolerances.

I have not eliminated carbs or wheat, but I have reduced them greatly, and don't eat nearly as much bread as I used to. My blood sugars have come down and my energy has improved.

It is perfectly safe to experiment to figure out what is best for you. Sometimes our intuition isn't as great as we would like to think!

Jan

That's what I was thinking: it's fascinating to me that I do so well now with fruits and vegetables, whereas before, I couldn't tolerate them.

A few questions I have though -

1. Is 1 day enough to make a difference? That's what makes me think it might be something other than the bread because my understanding had been that these things are the result of cumulative buildup, and so to notice a difference in something like energy, one would need to remove the item in question for a longer duration.....or is one day enough?

2. what about dairy? a dietician told me today that i should try removing dairy for a week.

Personally, I'd eliminate one thing at a time and give it about a week or so, before going to the next thing. Some people like to do a more drastic change, and eliminate all sorts of things. But, my thinking is that if you are wanting to find out if something in your diet is affecting you, you can't tell what is the offending food when you do too much at one time. But, dairy can be a common problem food, so something to consider.

As to how much time it should take, I don't know you can say for sure. Since you don't have celiac disease, there is no small bowel damage that needs to heal.

Jan

IHC,
I am rather energetic during the mornings, working out, cleaning house, working etc... after lunch (filled with carbs) I tend to slip into a 'mini coma' for about 2hrs and am capable of falling asleep where I stand, cry in desperation to get home to bed...I can barely hear the phone ring, move or talk sensibly to another being...I love pasta and bread and my pouch agrees but my body does not...for years I lived on them and combated desperate, debilitating fatigue...now I know, if I need energy, not to eat them but if I am home and can afford the nap, I do...My pouch (k pouch) loves protiens, mostly chicken & fish, just about any other than dairy and mixed with veggies I am full of energy for the day...once those carbs hit me I am a goner...
I have never been tested for celiac (they don't believe in it here!) but feel and look so much better as soon as I cut them out...
I have found that they are very addictive and as soon as I start eating them again I have difficulty stopping...gain weight and become sluggish.
Sharon

Interesting this topic has come up now. Recently Suzan and I caved to the hype and purchased a good juicer. I am 9 years post j-pouch perforation (yikes! how can it be that long ago???) and I am at my heaviest weight ever. I have found over the years that I can eat salads, some raw veggies and most cooked veggies and some fruits with no issues. However, I cannot eat them in the quantities I need to 1. meet the daily recommended intake or 2. keep me feeling full so I don't snack on junk. So Suzan and I really want to get healthy and just feel better. We are not doing all juices and no solids (like the 10 day "detox" you hear about), rather we have supplementing our diet with juice. I will admit I was skeptical, but desperate to find a way to get the fruits and veggies I need. Well, I am shocked at the changes I am experiencing in only two weeks. I do have a noticeable increase in my energy levels. I take 250mg of Nuvigil in the AM and 5mg of Ritalin in that afternoon if needed and I consume a lot of caffeine (usually in the form of Mt Dew). My caffeine intake is dropping to only 1 a day most days and I don't always need my afternoon Ritalin to stay awake and alert. My mind isn't as "foggy" as it has been lately and I have found that I am not snacking as much during the day which has cut a ton of carbs from my diet. I have lost a couple of pounds so far but I hope to lose a lot more. I have take it slow easing into juicing and experimenting to see how my illeo handles it. A surprising change is in the smell of my output. It has gone from packing a punch that could knock you off your feet in the mornings to barely noticeable. The only change I don't like is the punch to our checkbook. We are spending $150/week on fruits and veggies for two of us. I can see now how all the carbs can really slow us down regardless of a gluten sensitivity or not.

Tricia,
Do you have a farmers market or farmers cooperative around where you live? Here (in Paris vicinity) we get both open air farmers markets where fruits & veggies are much cheaper by quantitiy and cooperatives that deliver them to a weekly location...turn out to be much healthier and cheaper...
As for the juicing, I am now able to blend instead of juice...gives me all of the fiber too but blended so that it does not clog me up...works wonders on my pouch...it is its happy food.
Just a hint...no need to throw out all of the leftovers from the juicing...you can turn them into cake (carrot-pineapple, apple-berry...) or into applesauce or other fruit compotes...helps you to save a lot of money and not throw the gooddies out...
Sharon

Sharon - now that it is summer there are farmers markets around town. The problem is getting the time to drive around looking for them. So far our best value is going to something like Sam's Club and getting bulk fruit/veggies there. We give the goodies to Suzan's mom to put in her veggie garden and she is going to give us veggies from it when they are ready . The goodies also made great dog treats (assuming the food is a dog safe one). Pack the goodies in a toy and freeze it and you have hours of fun for your doggies!

Gee, in my neighborhood, farmer's markets are actually more expensive than the supermarkets! But, hey, I live in California, and produce is really big here. I just buy what's on sale and do OK.

OK Tricia, little dig here (so apologies in advance); you can probably buy a LOT of produce with your Mountain Dew budget!

Jan

Ihate,
I'd recommend some bloodwork. I sleep mediocre, and thought my tiredness was due to that.

When my bloodwork showed high liver levels, my subsequent diagnosis of cholangitis exlained my tiredness. Fatigue is a prominent symptom, and it is common for those who have or have had colitis to have cholangitis.

Jan - you are sort of right. It seems around here anyways (Ohio) that produce is sky high and I can get 3 12-packs of Mt Dew on sale for $9-11. That would get me 6 lbs of apples which lasts about 4 days. I keep telling myself I would rather be poor than keep all this weight on me. Plus if I drop the weight I might be able to drop some of my medication costs down (they are the true burden on the checkbook right now).

Here is one possibility,you must saturate the blood with thiamine.
Old Mike Glens Dad
http://www.ncbi.nlm.nih.gov/pubmed/23379830

On a different note with grains
this might also be a possible,who knows.
http://cen.acs.org/articles/91...e-Hidden-Toxins.html

You might ask your Doctor about a sleep study. If your iron, VitD and B vitamins are all in order, then perhaps you have sleep apnea?

Just throwing it out there.

Glenns Dad:

You've written some really interesting stuff regarding your son's observations from his various experiments. Might he have happened to have documented any of this in a blog or anywhere? I'd love to gain from this prior research.

He has no blog,I will ask him to write something new here again. I know he feels that his basic key to improved overall function is have all mercury fillings removed.
Eating organic,also grass fed meat,he has also
just gone off of eggs. Limited meals during the day.
Old Mike

Glenn posted what worked for him a few months back and I was able to find the thread. Here it is:
http://j-pouch.org/eve/forums/...217001926#9217001926

Jan

Jan - Thanks for that.

Wanted to update everyone here, but with a question.

After doing quite a bit of reading around these parts and other places, I've switched to the paleo diet. I can honestly say that I can't remember ever feeling better. I always ate very healthy (had already eliminated most processed foods) but now, after cutting out the carbs, dairy, and legumes, my energy levels/mental alertness is through the roof and my hunger cravings are gone. I used to always struggle with feelings of extreme hunger throughout the day no matter how much I ate, but now, I am always feeling satiated.

The latter observation makes full sense: the high amount of fruits I'm now eating is keeping me full as opposed to the breads which left me hungry quickly.

Where I'm unclear still is with regards to the energy levels: I'm worried I'm experiencing a placebo effect because one would not expect the effects of a diet change to work so rapidly upon something like energy levels. To elaborate, I've been Paleo for a little over a week but on two or three of the days I did some massive carb-binging for experimental purposes. On the days after those carb days, I've felt the fatigue I'm used to, whereas, on the days after Paleo eating, I feel tremenedous. I'm worried about a placebo effect because, if I have still eaten carbs on some of those days, wouldn't there be a residual cumulative effect upon fatigue levels on my body? ie: if my hypothesis is that the carbs are causing the fatigue, wouldn't it require that the carbs be gone from my body for a longer duration than just one day to experience efficacy?

Similarly, re: cumulative effects. It's hard to imagine going without some of my favorite high-carb dishes for the rest of my life. I've seen many people practice using "cheat days" to keep their morale high. If it's true that there would be cumulative/residual effects, wouldn't eating carbs one day keep one in a holding pattern indefinitely?

I guess the only way to know is to keep experimenting and seeing how I feel but, I would really like to know some of the science behind this. That will allow me to make better sense of my hypothesis.

Just wanted to add on to the thought because I think my question was too narrow:

In general, I want to know what are the residual effects of any food compound within the body? In example, how long does it take for the body to purge itself of some form of substance or the effects of some substance?

So for instance, let's say the hypothesis is that the carbs lead to long term bacterial overgrowth and the solution is to remove carbs from the diet. What would be the effects of having carbs just once a week? In example, is it such that moderation would suffice or must, assuming the hypothesis to be true, the body be purged completely of the compound. Again, this is with the assumption the hypothesis is true.

check out mountaindogdiet.com I think...guy has no colon and makes all kinds of diets...again everyones body is different also check into blood type specific diets

thanks will look into that

I think it all depends on your own personal system. Just like with lactose intolerance. It is not always an all or nothing sort thing. Some people tolerate unlimited amounts. Others none. I imagine a fair amount tolerate limited amounts.

The effects of any particular food are gone in a day or two. But, if you have bacterial overgrowth, it can take months for this to sort out. Antibiotics may shorten the time, or not. There is no sure thing.

In regard to once a week with a problem food, I think it has more to to with the amount at any given meal, as opposed to frequency. So, small daily amounts are probably better tolerated than a large meal of the offender once a week.

I know you don't like the "tailor it to your needs" approach, but there really is no strict rule, other than eliminate, than add back in as tolerated.

Jan

Thanks as always, Jan.

And as far as my statement about hating when people suggest to "tailor to your needs," that wasn't directed towards you. You always provide scientific information which is always appreciated.

I know. I just knew you were looking for something more specific, maybe like a "guidebook for a j-pouch." Wouldn't that be great? In some ways being a cookie cutter person would be awesome, but then again, boring. If only we could be identical on the inside! Life would be so much easier...

Jan