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Dear List Members,

First I'd like to thank everyone who responded to my question about coping
with fatigue.  I received 47 responses and even though they're still coming
in, I think it's time to summarize.

Almost everyone mentioned the importance of STAYING ON THE DIET.  "Going off
the diet can damage the villi enough so that it takes months to heal," one
person wrote.  Treat gluten like radioactivity, somebody else said, and
eliminate it.  Double and treble check the diet for ways gluten might be
sneaking in.

Many of you also suggested cutting down or even avoiding sugar and
carbohydrates.  "Carbohydrates are tiring," somebody wrote.  "We did not not
evolve to eat them...she should eat what humans evolved to eat."  This
person suggested checking out the Paleolithic Diet Page at
http://www.panix.com/~paleodiet/

Another person wrote "bread items made with a lot of starch can cause a
spike and drop in blood sugar levels when there isn't enough fat or protein
eaten with the bread to help sustain the blood nutritive level."

Other suggestions re. diet were to eat more beans and rice, eat more
protein, and eat more fresh fruits and vegetables.  Several people said they
ate six small meals a day instead of three big ones and other emphasized how
important it is to keep snacks handy (like cheese, veggies, cornchips,
yogurt, etc.)

One person suggested increasing carbohydrates.

Several suggested consulting a dietician.

A lot of you recommended taking vitamin and mineral supplements because
celiacs don't absorb as many nutrients from foods.  Some of you suggest
specific supplements.  One person takes a fructose compound vitamin from
Melaleuca.  One person takes a multivitamin and also lecithin.  Someone else
said they took one dose of B-complex, 1000mg. of Pantothenic Acid and
200-400 mcg. ChromeMate Chromium.

Another person takes Vit. B complex and Vitamin C.(This person suggests
taking the Vit. B in the morning because it gives him/her so much energy
they can't sleep at night if they take it late in the day.)

One person said they took 1 or 2 mega multivitamins/day plus 4000 mg. Vit.
C, 1600 mcg. Folic acid and 400 - 800 IU units of Vit. C.

Several people recommended Vit. B-12 shots about once a month.  Another
person suggested chromium to boost energy.

"The best advice I ever got," one person wrote "was to use brown rice flour,
brown rice polish."  They're higher in B vitamins, she said.

A number of you wrote to suggest my daughter be checked for anemia.  Iron
deficiency is a problem with celiacs, you said.  Checking her thyroid is
important, too, according t some since thyroid problems are also more common
among celiacs.  Others said she might have an electrolyte imbalance or be
dehydrated or suffer from allergies or other food intolerances or have
depression (a common problem).  One person suggest checking her for
mononucleosis.  "You don't have to be a celiac to get it!"  Someone else
said mercury poisoning from silver tooth fillings can cause fatigue.
Another person said we needed to have one national celiac organization and
should lobby those in Washington.

Next to diet, most of you felt exercise was very important because it
increases energy, helps build stamina and develops good cardiovascular and
neuromuscular systems.  Over 25% of you say you exercise regularly and you
suggested deep breathing exercises, daily walks, riding a bicylce and
aerobics.  The important thing is to exercise everyday even if only for 10
minutes until stamina is built up.

I was surprised to discover hw many of those who responded said they were
self-employed.  It lets you pace yourselves, you said.  Those who weren't
self-emplyed emphasized how important it is to find a non-stressful,
non-strenuous job and work to whatever level you're able.  There were
suggestions to work part time or share a job with someone else.

Get lots of sleep and take naps, some of you said, and one of you
recommended reading books on chronic fatigue, alternative medicine, celiac
disease and candida.

A sauna (Finnish steam bath) will lessen the toxic load and "up" the energy
level, one person wrote.

Someone else said, "The first and foremost cause of fatigue in CD is
undigested substances which leak into the system from the small intestine.
They're called opioid peptides and come from undigested milk, gluten, and
probably citrus fruit."  They act like morphine and the effect is noticeable
15-30 mnutes after eating.  It was written about by Dr. Karoly Horvath and
you can read more about it, this person said, by visiting [log in to unmask]

"Everyone needs a personal reason to be well and strong," one person wrote.
"I found a sport I adore - horseback riding."

The same sentiment was also eloquently expressed by another writer who said,
"If your daughter can find something she...passinately wants to do above all
other things, she may be able to break through the cycle."  He went on to
explain that it must be a passion, something she really WANTS in order to
successfully drag herself over and through her exhaustion.

I would like to thank everyone who took the time to write in.  I never
expected such an outpouring of help.

Lani
E. Stoneham, ME
Visit our celiac web page at:
http://www.freeyellow.com/members/clanthompson/index.html