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Hello List:

A few days ago I asked whether or not edema could be related to Celiac
disease, and wondered if a gluten-free diet would help with the edema,
as well as with the usual gastro-intestinal/malabsorption problems.

I have received an overwhelming number of responses, and if I missed
replying to anyone individually, please allow me to say THANK YOU now.

Of the more than 65 e-mail messages I received, only 2 were doubtful
that edema has anything to do with CD. Of those two, one suggested the
possibility of kidney or heart problems (which in turn could be
related to CD)and the other surmised that edema is caused solely by a
high salt intake.

The vast majority were of the opinion that edema is a not an uncommon
symptom of Celiac/malabsorption, and that a gluten-free diet helps a
great deal. The explanations of *how* edema is cause by Celiac varied
greatly, however.

 Following are excerpts from a few of the letters I received.

>     "...I was finally gluten-free at age 52...  Until that time I
awoke every morning with swollen hands... I was amazed when I went
gluten-free to find that the hands were no longer swollen in the
mornings..."

>     "... was just diagnosed with Celiac 6 days ago.  I started the
diet immediately and have never felt better in my life. One of my big
symptoms was edema. I have lost 5 lbs this week---all water.  My GI
Dr. told me that swelling is a symptom of malnutrition. Once you start
the diet, it should go away."

>     "Like all visible symptoms of CD, edema apparently shows up in
some, but not in others. There are other causes of edema: my doctors
systematically eliminated them, one by one, before fixing on
malabsorption as the clinical symptom that allowed them to get
eventually to CD. The reason malabsorption in general and CD in
particular can cause edema is that undigested proteins appear in the
blood and create (an osmotic) pressure
pushing fluid out into tissue..."

>     "...I had edema on and off.  A lot in the summer time. When I
was finally diagnosed I was told that the edema was because I was
lacking proteins... It took about 3 months on the diet for it to go
away..."

>     "...It is related. [to Celiac]...

   (1) Marsh MN, _Immunopathology of the Small Intestine_ John Wiley &
Sons,Toronto, 1987; pages 374-377,  has established (and others have
confirmed) increased microvascular permeability, in celiac disease, as
a result of gluten challenge. The possible connection between celiac
disease and edema is thereby established.

   (2) This is from Practical Gastroenterology - Oct 1980 - Volume IV
Number 9
Celiac Disease, Clinical Manifestations
Fiona M. Stevens (Research Fellow, Dept. of Gastroenterology, Regional
Hospital, Galway, Ireland)
(Under Major Symptoms of Celiac)
EDEMA
Multiple factors contribute to this condition, including poor
absorption of ingested protein, impaired hepatic synthesis, and
excessive loss of cellular protein from rapid exfoliation of damaged
enterocytes. Anemia may
aggravate the edema."

>     "...As I sit here, I am looking down at swollen ankles.  Yes,
edema does happen to us.  I checked with my pharmacist, nutrionist and
MD, who is a homeopath, and all agree...  Suggestion:  start keeping
an accurate food diary which also indicates when swelling occurs."

>     "...I had severe edema before going on my gluten free diet.  But
once I started the diet, all symptoms, including that, went away.  At
one point before diagnosis, I had retained about 20lbs in water
weight."

>     "... I had some pretty extreme edema just before diagnosis.
Apparently it has something to do with an
electrolyte imbalance due to the diarrhea etc. After going gluten
free, it completely disappeared and have had no problems since..."

>     "...Prior to my daughter's diagnosis, one "compliment" was
always how round and cherubic her face was, and how cute her dimpled
wrists, knees, fingers, etc. (she was about two at the time, and
everyone loves a "fat" baby.)   What we didn't know was that for her,
she wasn't fat, she had severe edema from gluten -- swelling is a
histamine response to an allergen (in this case, gluten), and she
wasn't pudgy -- her body was trying to keep her alive, and doing a
sorry job of it!!   Once she was off gluten for a while, her swelling
eventually diminished. When she's puffy, I know she's had a gluten
accident!"

>     "...Having lived with the edema I can tell you that for me it is
a very sensitive indicator of a contaminated diet and that the edema
can recur in as short as a few hours to a day after a small ingestion
of gluten containing foods.  I find it clears reliably within a few
days of being super careful about my diet.  I think that it may in
fact relate to a "leaky gut" and a reaction to other proteins which
get through the bowel mucosa rather than the gluten itself but what do
I know?
       Probably more common as a cause would be other conditions
including heart failure, hypothyroidism,  venous insufficiency and a
multitude of other problems.  I wouldn't assume it's Celiac Disease
alone without the other causes being looked at or considered.  I would
be reassured if it rapidly abates and stays away on a
strict diet."

>     "My son had very bad edema in his arms, legs (especially feet )
and tummy... The doctors told me it was due to the protein loss he was
having from his damaged villi.  The edema gradually disappeared after
he had been gluten free for about two months..."

>     "I had severe edema for years. My feet would swell up so much that
my toes couldn't touch the floor! My lower legs would swell up so much I
couldn't wear anything with long legs. My hands would swell up without
any discernible cause.  I was on 2 powerful diuretics,and was still
having these problems! I was keeping my feet up morethan I was on
them, and was still getting that swollen!  I have been gluten free
since the beginning of January. Now the only time I have any really
noticeable swelling (and it is only in the ankles, not the
feet or legs) is when I accidentally eat some gluten (hidden or cross
contamination, or someone not realizing there was gluten in something
they served me). It's great!..."

>     "Yes, edema is a symptom. I had a bad case of it; all my joints
were swollen. I was diagnosed with degenertive arthritis in the knees
and extreme carpal tunnel syndrome in both wrists. On the gluten free
diet my swelling went away. No more arthritis and only minor carpal
tunnel problems..."

>     "Cut down on your salt. Don't put salt in your foods. This
causes swollen extremities. Not anything to do with gluten. Have you
had your blood pressure checked lately?"

>     "I too have had problems with edema-  especially in my feet and
ankles but sometimes my hands.  My doctor has run blood tests and says
it is related to low serum protein.  In otherwords you are not getting
enough protein, either through constant diarrhea or just a low protein
diet.  The body thinks it is starving and retains fluids.  For me, a
diet of eggs, lean red meat, skim milk etc. etc.  quickly corrects the
situation..."

>     "Yes, I have had to cope with swollen extremites a lot before
being diagnosed, and it went away a few weeks after eating glutenfree
and never came back again."

>     "I was diagnosed 13 years ago...  When the problems got worse,
(constant diarreah, loss of weight, lack of energy etc) the other
thing that happened was my hands and my feet were swelling up with
edema...Once I started the gluten free diet all of these problems went
away... So, make sure that your blood is being tested and don't start
a gluten free diet until all of your testing is complete."

>     "I have trouble with swelling when ingesting corn, soy or
wheat...and yes it does go away when you go gf...but I also have to go
soy and corn free.   You will be amazed to see how small your ankles,
hands and face really are when the swelling goes down  :))  and how
well you feel then too!!"

>     " You may want to read the new book  "Coping with Celiac"...

>     "Yes, I was very edemic before I was diagnosed with Celiac
Disease.  When I started the gluten-free diet, the edema started to go
away.  It was wonderful!"

>     "There aren't that many references to edema when typical celiac
symptoms are discussed, but I suffered from severe edema in my legs
prior to diagnosis. This edema in my legs was actually what prompted
the doctor to step up the process of figuring out what was wrong with
me...  The swelling went away within days on the gluten-free diet.
The explanation my doctor gave for the edema was that the protein
content in my blood was so low that it could not hold the fluids in my
body, all fluids basically went to the "bottom" -- my legs and feet.
I was quite underweight at the time and also suffering from heart
problems.  The doctor explained it
all as symptoms of untreated celiac sprue.  All these symptoms went
away quickly after having started the GF diet.  Pretty amazing."

>     "During times of 'celiac crises', as my GI calls it, I did
suffer with edema. Blood tests at those times revealed very low
protein levels, which has something to do with allowing the fluid to
seep out into the body.  This did only occur in my later years of
celiac condition ( it was twenty years before my symptoms were
properly diagnosed); the problem has not repeated itself since going
on the gluten free diet 10 months ago."

>     "Yes, its related to Coeliac ( though can't remember the medical
reason for it - I've seen it discussed on one of the many web sites)
Yes, it goes away when you stop eating gluten (or, at least, it did
for me!)

Please don't let this tempt you to cut out gluten before your
diagnosis is confirmed - it's very hard to go back on to it and end up
in dietary limbo knowing only that gluten-containing foods cause
problems but not being
certain why."


Whew! If you think that was a bit much, you should see my "inbox."
:-)

Thanks again to all the list-members. What a wonderful source of
information and support.

--Gwynnedd