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From:
Sally R. Hackett <[log in to unmask]>
Date:
Sat, 18 Nov 2000 12:19:06 EST
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<<Disclaimer: Verify this information before applying it to your situation.>>

HI ALL-


    Here is the weight loss summary.   Please read all of this as all of
these comments are varied.   I thank all of you for your thoughts and sharing
yourself with me.

Looks like there are a lot of us out there.


I've been GF since the end of July,  lost 5 lbs the first month, and
have not gained any back yet.  I was concerned after the first month
that I would keep losing, so I posted a question to the listserve about
"losing weight". Most responses I got said that you may lose in the
beginning but will most likely gain it back in time. My digestive
problems have improved greatly on the diet, except for a few accidental
ingestions.  I guess Ididn't realize how bad it was, but now I can see
how badly I DO react when Iingest gluten accidentally. It is SO nice to
be able to go for WEEKS (instead of HOURS) without panicking trying to
find the nearest bathroom!

As misery loves company, just want to let you know that I have been on a GF
diet for 9 months and am still as thin as a rail.  In some people, it takes
as long as 2 years to see positive results.  Has your doctor screened you for
other  possible causes of weight loss?

Sally... can you tell which food is not being digested... carbs? What REALLY
helped me was using GOOD probiotics. I had potatoes going out the same way
they were coming in. It was awful, and of course always upsetting. If you are
ok with milks, try eating some more cheeses and REAL yogurts (only heath
food). Your flora is very important is breaking down food. I've noticed in
the past  that when I was ill from gluten intake, it 'laid out' my villi and
most likely 'washed out' my needed bacteria/flora for digestion. It was a
difficult situation until I starting using acidophilus (spelling) and bifidus
ect in probiotics. That made a huge difference almost overnight for me.

Just a thought. Be sure your pancreas is OK. Another thing that might not
hurt is using pancreatic enzyme replacements in aiding digestion. Go easy on
the pancreatic supplements. May cause gout.Did you have a biopsy and a full
blood work up and all of the other goodies to check for any other
possibilities?

After 5 months, this is not unusual. You might want to slow you digestion
down by taking psillium powder before each meal. This is what is in Metamucil
but it is preferrable to get it natural from a health food shop as Metamucil
has a lot of additives. If you take a teaspoon before each meal with just
enough water (a few sips) to make a slurry in your mouth, it will both add
fibre to your food intake and slow down the speed of digestion and help take
care of the food particles in your stool. You will also better absorb the
nutrients in your food as there will be more time for this to happen. You
will also have less frequent bowel movements.

This is what has worked for me and I am now cutting back on the carbohydrates
to lose some of the weight I have been gaining as I am overweight already.

There is an other good site to ask your question to:
http://www.delphi.com/celiac/messages/

Yes.  It seems every time I gain weight, symptoms return until it goesaway.
I've had some luck with a very conservative diet - lots ofLundberg rice
crackers.  Good luck.

I have been gf for 6 months and haven't gained any weight back yet either.

Check your diet!!  It must be totally gluten free. Do not eat any processed
food.  Eat just plain food like, vegetables, fruits, meats and if you are not
lactose intolerant, milk and hard cheeses, eggs.  It is important for you to
know what food has gluten in it.  You can check the web page:   celiac.com


I've lost 7 lbs since going GF.  I have trouble holding on to my weight
anyway because of other complicating medical problems.  But I think
thathaving to cut staple items out of my diet and difficulty in
findingreplacements led to this recent loss.

Also, I don't tolerate fat so cannot add calories that way or use a lot ofthe
baked goods which are so high in fat.

But eventually I do stabilize my diet for a while until I discover something
else in it has hidden gluten.

So it's a slow process and a work in progress.  Try not to panic or get
discouraged.  This list is a lifesaver.

sally, it took me over a year to see weight gain and improved stools. i
am 5' 3" with a medium frame. i was down to about 100 pounds, looked
like a stick figure. now, 2 and a half years later, i am 130 pounds, and
look and feel much better. stools sometimes iffy, but most often they
approximate normal, without meal bits obviously present. when they are
and i have diarrhea, i know i have either inadvertently ingested gluten,
or i have eaten something way too rich for my compromised system to
accommodate (for example, this past week i made a dish with chicken and
coconut milk. the coconut milk is still way too rich for me, and my body
proved it!

I've battled with this over the last 15 years, and with my three kids,
who all have varying degrees of gluten intolerance.  I've found that
during times when weight maintenance is a problem, that I have to
increase calories with things like carnation instant breakfast
supplements, peanut butter, etc.  and watch EVERYTHING we eat, including
vitamin supplements.  Even the most minute amount can affect us during
these cycles.  Other times, I gain without difficulty.  Other
suggestions:  take a high quality dose of flax oil every day, use the
cold pressed, refrigerated variety.  This literally works wonders for all of us.

I lost a ton of weight at first now I'm steady at 105 lbs. after 5 months. No
matter what I eat or what I do- I can't gain weight. I find that I am rarely
hungry any more. Well, this probably wasn't much help, but I can't
gain weight either.

When my daughter went gf it took 6-8 months before her bowel movements became
mostly "normal", and even longer before she began to put on wieght and grow
properly again.  She was age three at diagnosis; I understand the healing
process can be even longer for adults.  (She is now alomst seven and healthy
and thriving!)

Get  hold of a celiac with about 5 years experience and  have them go over
everthing you are drinking, eating foods and medecines and the way thatyou
have arranged your kitchen in order to stay GF.  I once met a newlydiagnosed
person and happened to meet them in their company's cafeteriawhere she was
actually using a common toaster with her  GF bread .  Shehad no idea that her
slice was picking up ordinary crumbs from everybody's bread.  After you do
that, check with your Dr. again to make surethere is nothing else going on

I am staying steady, but am only 2 months GF.  In the initial phase of this
(10 1/2 years ago), I GAINED weight, while I was constantly hungry and
eating, and having diarrhea.  In the last few months, I have had severe loss
of appetite, constipation, and weight loss.  I've lost 55 lbs, but that is
fine because I had gained so much.

Some people take longer than others to heal.  You may also have some hidden
source of gluten, through medication, makeup (lipstick?), vitamins, or even
(for example) meat cooked on a grill which previously had marinade on it
(just a residue may cling, even though it is scrubbed).

Hang in there.  If you are seeing ANY improvement, you are still headed in
the right direction!

After nearly 4 years on a gf diet I am still very thin and when i gain a
couple of pounds they only stay on a week or two. I currently weigh
about 39 Kgs - 86 lbsI am only 5ft 1in tall so I don't look too emaciated.

I have not been able to sustain any weight gain and I follow a very strict gf
diet.

I also have gastroparesis and so am not able to tolerate fatty foods very
well, which doesn't help.

It took me a while to stop losing weight and start to gain weight on a GF
diet - it takes time for the intestines to heal and start absorbing food and
nutrients again.(If you read the list long enough, you will find that the
pendulum swings between losing weight and gaining weight for most of us!)

Your healing response time can vary from person to person.

The main questions are: 1.  How long were you undiagnosed?     2.How severe
were your symptoms?

The first change in my daughter who had the symptoms for 6months before
a diagnoses occurred.  She went from 32 lbs to 25 lbs at theage of 2.
Before she gained any weight back she got back her color, herenergy and
as her weight slowly came back during the following year her hairstarted
to grow again and her immune system improved.  Just remember it cantake
half as long as your were sick or twice as long or longer to get
yourweight back.  It will depend on how badly damaged your digestive
track is and how quickly it heals.I read your post about weight loss. It
took me nearly 18 months to gain weight. I had dropped 36 pounds (I
weighed 128 and went down to 92). When I went GF, I worked hard at
sticking to THE DIET, but I just couldn't gain weight. I mean I ate like
a horse.Then my doctor put me on Glutagenics powder. It's made by
Metagenics, a reputable  supplement company. The Glutagenics powder
contains glutamine (known to heal the gut), licorice (also good for the
gut), and aloe. Within a month, I had gained about 8 pounds! I've now
regained 20 of the 36 pounds I lost, and I take only a teaspoon a day of
this stuff in water.It's available only through physicians and other
health care providers. And, I know it's GF, because I spoke to the
company. Good luck and be patient. It takes some of us a long time to heal.


Sally Hackett,  Raleigh NC

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