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ORIGINAL POST: Dear listmates,   I know someone  who is considering whether
she might have CD and wants to have enough justification to ask her doctor
for the celiac antibody testing.  She doesn't have e-mail so I'm forwarding
this request for her. She would  like to know if anyone did not experience
any weight loss or might have experienced weight gain before their
diagnosis. She says that she has episodic diarrhea and anemia, has
experienced a pulmonary embelism, and has osteoarthritis.  Thanks in
advance,  Laura

Thanks again for the over 75 responses received:  Update:   She is shocked
and grateful for the number of responses which I printed out for her on
several pages and which she thought was originally one long e-mail.  So far,
she’s gone GF for one week and thinks she’s already felt better.  I had
warned her against going GF before getting the blood tests so she’s back on
gluten and I hope she gets the blood tests ASAP.
She also remembers vomiting as a child, then going asymptomatic ‘til again
in her late 20s or 30s.


That is one of the biggest problems as to why doctors don't test. Not
everyone has to be anorexic looking or had recent weight loss to be celiac.
My son was tested because of the genetic component, I was celiac first. He
was a big boy and did not look like the ethiopian child that doctor's think
celiac children should look like. My family physician did not want to test
him because he wasn't symptomatic. I went ahead and got him tested anyways.
The result: His blood test was only 50% positive, but his biopsy at age
three was already severely flattened. If your friend has unexplained anemia
and episodic diarrhea, it is my opinion that that is more than enough to
justify a blood test for Celiac.

I have never had weight loss with CD and I have the DQ2 gene. I was sick for
6 years and had such fatigue that I could hardly function. I ate salads for
the last 2 years before diagnosis. After I added bread to my diet and some
Campbell soups for variety, I got such stomach swelling and pain during the
eating of a meal that I stopped eating in the middle of a meal. I gained 3
pounds a week while ingesting little food. I did not have the diarrhea
symptoms others have. I was diagnosed by a gastroenterologist.


I am biopsy diagnosed and following the diet for 8 years. I have never been
underweight--opposite, actually. I had low anemia and severe bouts of
diarhea, pain in left back flank (colon pain). etc., etc..... Not all of us
are skinny!

I didn't (and I'm sure lots others) have weight loss. I had slight weight
gain. My hematologist at the time told me I "didn't look like I had CD".
Good thing he also sent me to a Gastroenterologist who thought I did. Good
luck.


I have recently been diagnosed with CD through blood analysis and biopsy
(with symptoms such as diarrhea, severe abdominal pain and spasms, bloating,
nausea and dizzyness for at least the last 6 years). About 3 years ago I
contracted Cytomeglavirus and had lost 11kg prior to this diagnosis (doctors
unfortunatley put the weight loss down to the virus and did not investigate
any other possibility despite my continuing CD symptoms). After this time I
slowly gained weight and have been a healthy 60kg for the past 18 months,
despite experiencing the above symptoms prior to my diagnosis 4 weeks ago.
So, I can say that it is possible to have CD and all symptoms and not have
severe weight loss. My GI suggested that for those that have had undiagnosed
CD for some period of time, the small intestines may try to adapt and take
on different roles in the digestion process than they would in a normal
person. This may explain the lack of significant weight loss experienced.

I think your friend should, as a consumer, ask for the blood test. If her
doctor won't agree, it is a good indication she is with the wrong Doctor.
Sydney



Both my daughter and I did not experience weight loss. In fact, except for
some diarrhea on my part, we didn't exhibit strong symptoms.  We were
diagnosed before we got really sick, I guess, because our local support
group
sponsored a blood screening for first degree relatives and my father
suggested the whole family get tested.  We turned up positive.
Vermont


Was heavy before dx, still heavy six months GF.  I also have colitis and my
doctor didn't think it was possible for me to have either of these because
of my
weight.  I've had the colitis confirmed medically but opted out of the
gluten
challenge and endoscopy because I felt so much better after giving up
gluten.


When Joe Murray was at the U. of Iowa they diagnosed three celiacs over 400
pounds. Here is a study on overweight celiacs:
Prospective study of body mass index in patients with coeliac disease was
published in the BMJ. It reports that of 50 newly diagnosed celiac
patients, 11 were underweight, 22 were within the normal range, and 17 were
overweight.
http://www.bmj.com/cgi/content/full/317/7168/1290



I have had a terrible time with weight gain. In fact, I went on a
elimination diet to se what foods were making me puff up with water.
Sometimes the antibodies of CD attack a person's liver, and this might
explain the weight gain. My liver used to hurt! It is much better now
California


I experienced a lot of weight gain before my diagnosis and my size actually
blew out from an American size 10 to size 18. Within 3 weeks of going on the
gf diet I lost 15 kilos - approximately 32lbs - over 2 stone. Never had
normal symptoms but was always anaemic.
Gladstone...Q...Australia

I am one of those who had weight gain, constipation and anemia. (I also have
hypothyroid which doesn't help the weight issue) Anyway, if she is having
other symptoms of Celiac by all means tell her to have it checked. I have
been gluten free for over a year but have other food allergies so am not
quite optimal yet.
Cedar Rapids, IA

When my disease was triggered, I gained more than a hundred pounds at a
nearly impossible rate when, at the same time, I was unable to keep much
food down at all. Now I have lost some of the weight, when before going
gluten-free, it didn't seem to matter what I did... I hope your friend will
consider getting the tests-- just to know for sure one way or the other.
It's rather freeing just to know that it wasn’t ALL my fault or an
impossible trick of genetics that got me this fat. I have hope again that I
can do something about it, and I don’t feel all that self-hatred for getting
this way anymore.


Be sure to have this friend tested before she goes gluten-free for a long
time because the tests won't be valid. However, I think the best test is to
refrain from eating gluten for a week and see how the friend feels. I have
never been officially diagnosed,but the white spots on my fingernails have
disappeared after being gluten-free for two years. The rough patches on my
skin on the knees and elbows have disappeared. When I was young, I had
thyroid problems and lactose intolerance. I can now tolerate a limited
amount of dairy and hard cheese, but ice cream still causes phlegm.

I wish that I would have been officially tested, but I don't want to go
through the bloating, intestinal cramps, and gas that would happen if I ate
wheat again.

Celiac symptoms are very sneaky, but I can look back at the diseases of my
ancestors and see auto-immune disease, rheumatism, and colon cancer. Doing
without gluten is not a problem for me.

I was chubby as a child and have never been thin. I put on about 100 extra
pounds before I was finally diagnosed in my 40's. I am always saying that
you would think I would lose weight when I have so much diarrhea when I
ingest gluten by accident. I finally believed my diagnosis when I found a
support group in which there were several diagnosed celiacs who were
extremely heavy.

Nobody should have to "justify" asking a doctor for celiac antibody testing.
THEY should be recommending the tests. Unfortunately, that's a fact of life
nowadays, isn't it?
I have had extreme weight loss at times in my life, but when I've been able
to control my gastro symptoms, I have gained weight, even to the point of
being slightly overweight. From what I've read, it's the body
overcompensating to carbs instead of from fats in the diet (we don't absorb
fats well, but still can absorb carbs).

My daughter had no weight loss. She was dxed 1 yr ago, presented with
anemia, short stature and abdominal pain.






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