Fiber is Bad For ME/CFS Patients! (?)

[Cort]

As someone who's rather religiously followed a high fiber diet for most of my life I was rather astounded to hear Dr. Alan Logan - an ME CFS physician - suggest that high fiber diets could lead to increased fermentation in the gut (hydrogen sulfide gas??) and that high fiber diets (and the fermentation linked to them) had been linked to anxiety and irritability in some laboratory animal studies. Could it be true? I've certainly found that liquid fasts - in the short term - are very helpful for me.

Anyway check Dr. Logan's interesting comments out and take the diet poll included in this thread (hopefully it will appear!)

http://aboutmecfs.org/blog/?p=613#comments

 

[Michelle]

Didn't see the poll at the blog -- though my connection was acting funny.

As I mentioned there, fiber is very difficult for me, as are a number of probiotics. I find that Traditional Chinese Medicine food recommendations for my condition work well for me -- meat (in TCM I'm "blood deficient" which is sounding more and more like the case in conventional medicine), cooked (or steamed) vegetables (raw are too hard on my stomach), fish, and small amounts of grains and dairy. Though plain vanilla frozen yogurt would be considered bad for me in TCM, yet it just settles my stomach so well at night.

 

[Jody]

Hi Michelle

How wonderful to have vanilla frozen yogurt as an aid to digestive well-being.

You just reminded me. My mom was going to our naturopath for some digestive problems. She also had problems with raw vegetables and was advised to go with steamed instead. And the naturopath also recommended that she try an old fashioned castor oil treatment.

Trying to remember here, she saturated a cloth with castor oil and would put it on her stomach, while lying down, and leave it for a length of time, can't remember how long, whether a couple hours? Not sure though I could find out if you are interested in knowing.

Mom thought this sounded a little whacky but she tried it and over a period of days, or a week or thereabouts, the treatment brought about a lot of relief from her symptoms. She did this I think every day for some weeks, and then stopped.

When the symptoms reappeared some time later (months later I believe) she got out the castor oil again and in a day or two, symptoms once again disappeared.

 

[Tony]

Hi folks,
Several years ago I went gluten free and noticed a rapid change for the better in mental clarity. A nice improvement.
I tested negative for coelic but continued to eat this way as I feel better on it and have now recently discovered I have fructose malabsorpton.

Same with dairy, I can handle a little milk but not much cheese. For some reason (different proteins my dietitian says) I handle small amounts of goats cheese better.
I fall into the category of 45% of ME/CFS patients who have fructose malabsorption (according to one study by De Meirleir) and wheat is a major problem food there too.
There are quite a few fruits that are high in the fructose to glucose ratio so these are cut out or cut way back on this frucmal diet. Apples and pears are the main culprits.

 

[Jody]

Hi Tony

Welcome to the forums.

Fructose malabsoption, huh? I have never heard of this.

After reading your post I did a websearch of "frucmal diet" and only found 3 mentions of it.

I'd be interested in learning more about it.

Can you fill us in a little more on this type of sensitivity?

 

[Jody]

Here are a couple of articles on the topic of grains and fiber --

"The Great Grain Debate"

http://www.ncubator.ca/Great_Grain_Debate.html

and "Chronic Fatigue Syndrome, Where Even the Mental Stuff is Physical"

http://www.ncubator.ca/Mental_is_Physical.html

 

[Tony]

Hi Jody, and G'day to you... Yep, "I come from the land downunder"...

Frucmal is just a shorthand I used, being slack. The proper term is fructose malabsorption.

Here's a link to a report from a De Meirleir talk in 2007:

http://cfsfm.org/index.php?option=com_content&task=view&id=1573&Itemid=769

And a dietitians summary of fructose malabsorption:
http://www.ledanutrition.com/pdf/Fructose_Malabsorption_Summary_Fact_Sheet.pdf

"Fructose malabsorption is a condition where the small intestine is impaired in its ability to absorb fructose (a naturally occurring sugar).
When fructose is not absorbed properly in the small intestine, it can travel
through to the large intestine where bacterial fermentation can cause symptoms of irritable bowel syndrome."
..."People with fructose malabsorption find wheat, not gluten, is a problem food when consumed in large amounts, and so can generally eat rye, barley and oats.
People feeling better on a wheat-free diet should be investigated for coeliac
disease firstly, and then have investigations for fructose malabsorption. Some
people can have both coeliac disease and fructose malabsorption. Fructose does not cause damage to the small intestine like gluten does in people with coeliac disease."

Cheers..

 

[Jody]

Hi Tony

Well then, the fact that I found 3 references to frucmal was pretty good.

What this describes sounds like it needs a low carb diet of some kind.

That would take care of the wheat thing and the fructose thing, right?

 

[Tony]

Hi Jody

Yeah, nice work, 3 references...

I don't think low carb is necessary with this. It's all about the fructans (chains of fructose) in wheat and the higher fructose to glucose ratio in some fruits, mainly apples and pears.
It's an odd food grouping that includes onions, green and yellow beans, asparagus and honey...is that weird or what?
It's recommended to not eat too much of even 'safe' fruits per day. The advice I got was no more than 2-3 serves per day, but I tend to just have the one nowadays, my favourite...bananas..

Oh, and I read your blog re 'Where even the mental stuff is physical" and I thought...yep, that was me too!

 

[busybee]

I also ate mainly carbs and had to change to eating vast quantities of meat(plus l-carnitine supplements). I also cut wheat thinking it was a gluten problem. It was after I read about fructose malabsorption four times within a month (one was Cheney, Fairfax) and someone asked for alternatives to wheat because of it, that I realised. I'm very slow on the uptake sometimes. But I have a good excuse

Then Dr Logans interview mentions it again.
It is quite clear that prebiotics (inulin, chicory root, fructo-olligosaccharides) can increase both Lactobacillus and Bifidobacteria, however it remains unknown if they are also promoting undesirable bacteria as well. There have been hints that they can.

I am going to stick to low carbs as well for now, just in case.

Bx

 

[Jody]

It's an odd food grouping that includes onions, green and yellow beans, asparagus and honey...is that weird or what?

It is a weird grouping. I don't know how you'd ever be able to figure it out yourself, that they were the particular culprits, because to the layman they don't seem to have that much in comon ... honey and onions?

We human beings seem to have an infinite number of variations to what foods are healthy -- I don't think I approve.

Oh, and I read your blog re 'Where even the mental stuff is physical" and I thought...yep, that was me too!

It's amazingly common, once you're aware of the correlation. There's an awful lot of us out there.

 

[Jody]

Hi Bx,

Nice to meet you. I think this is our first thread together. Anyway, a belated welcome to the forums.

Pretty understandable to be slow on the uptake with something like fructose malabsorption (did I get that right? That's how new it is to me ). I don't think alot of people are aware of it, are they?

And yes, you have a great excuse. Me too.

And the possibility of prebiotics maybe being bad for us, that is news to me.

What about probiotics?

 

[Victoria]

A Melbournian too!

Hi Tony (or should I say "G'day")

Will have to follow up the Fructose malabsorption theory.

(I have a problem with Wheat & most other grains, but not plain dry biscuits).

2004 testing including a colonoscopy & gastroscopy revealed no signs of villi damage (associated with Coeliac disease), but I've since read that you can be borderline & it doesn't show in the colonoscopy.

I currently follow a regime which is about 97% dairy free, rarely grains except dry biscuits, organic red meat x2per wk, fish, organic eggs/fruit/vegetables/nuts (which I've been eating for 25 years but have recently broken a tooth in half, so the dentist advised a few less nuts) & seeds (which I must chew properly or I get excruciating bowel pain).

Gone off organic chicken a bit as I ended up in hospital with suspected food poisoning in late January this year.

I gave up lentils about 4-5 years ago & other kidney/cannalloni beans etc a couple of years ago (too much fibre - excruciating bowel pain again despite eating Dhal & other vegetarian Indian food for more than 25 years).

But I have discovered PSYLLIUM HUSKS!

For all those people with IBS or grain sensitivities, it's the most wonderful form of fibre. I have a "rice flakes with psyllium husks" cereal, AND a tablespoon of plain psyllium husks sprinkled over the top. I mix it with freshly ground flaxseeds & organic rice milk & put it in the fridge overnight (if I remember to do this, that is).

Served with a sliced banana & 4-5 organic walnuts chopped on top (I say organic nuts because I think they taste better & are better for you).

Voila! (if you are not adverse to the texture) It resembles a gluggy, bread & butter pudding (which I loved as a child). It has to be the most soothing, bulky fibre breakfast imaginable. it's comfort food. I do eat alot of fruit & veg also, but this food combination for breakfast is finally the answer to my IBS.

2 1/2 years of chronic diarrhea was resolved in Feb 2004 (with the "clean-out" white drink, that one had to drink all day, before the colonoscopy).

My Blastocystis Hominus parasitic infection which was not cleared by numerous antibiotics was finally over (which also brought an end to my mainly raw diet in summer - I suspect I acquired the parasite through insufficiently washed raw cabbage/salad greens etc)

If you make the bowl of cereal up fresh in the morning, you need to ensure you drink plenty of liquid - psyllium husks expand quite a bit.

I have steamed english spinach & soft boiled eggs or, maybe fresh sauteed mushrooms & spinach on the weekend for a change.

I wish I'd gotten around to this discussion earlier. Food (ie Food as Medicine) is my favourite health topic, but the time I have spent on the site in the last couple of days will have to take a break soon. I need to get back to work or I'll be out of a job.

"Have a Good Day", Tony,

Victoria

 

[Tony]

"Hey" Victoria (I decided to go all "US of A" just for this post...

It's funny, we probably live around the corner from each other! Good to see you here.
Re the fructose mal. it's more common than we know. Some good recent research has come out of Box Hill Hospital's gastro's and dietitians who are just up the road.
Certainly worth getting checked if wheat is a problem. The breath test costs $70 and takes about 2 hours. It's sitting in a chair reading a book or whatever, blowing into a tube every 15 mins.

With gluten intolerance I'm sure there is a spectrum of it so not necessarily all or nothing.
I've read somewhere that some will show villi damage, others hardly at all or none found in biopsy because they don't get the 'right' spot for the individual.
At least that's my understanding.

Cheers
Tony...

 

[Jody]

Chronically Fatigued,

I so understand what you're saying.

Though I would tank on your diet.

I major on meat, especially red meat and lots of it. Lots of butter, and olive oil as well. Plenty of vegetables. Strawberries and raspberries when I can get them. And I mostly drink water with a slice of lemon (no rind, because of chemicals). I have a small cup of coffe after dinner with cream (18%).

Avoid all other carbs but what's in my veg (rarely potatoes or corn, too many make me sick) and the occasional berries.

A thought, it might not be the omega 3, that bothers you. Maybe mercury in the fish?

I'd have to agree, your diet is bizarre. But then, so is mine.

 

[Jody]

Chronic,

Pretty interesting situation you have there. Figuring out what was safe for you to eat and what wasn't must have been quite the challenge. But I suppose once you'd sort of gotten it figured out, it wouldn't be so bad.

The trick is knowing what works for you and sticking to it I think.

 

[acer2000]

Is there a place in the US that you can get tested for fructose malabsorption. I have had the SIBO breath test, but it was negative...

 

[Tony]

I'm not in the US but there should be lots of places. The test is done by taking a fructose challenging drink of 25-35 grams and the hydrogen you breath out is measured by a simple electronic machine like a portable breathalyser.

Something that isn't so accurate but gives a clue is to go on a low fructose diet for a few weeks/months? and see if you feel better. One of our leading dietitians who's studied this reckons anyone who feels better without wheat should have the test done. Probably because wheat is often so dominant in our diet and contains fructans.

 

[Cort]

Cheney prebiotics

As I remember Dr. Cheney was questioning whether prebiotics were a good idea as well.

 

[acer2000]

The problem is "high fructose corn syrup" is in almost everything. So it would be easier to do the test than it would be to swear of "fructose" completely for a few months.