<<Disclaimer: Verify this information before applying it to your situation.>>

I was and still am over weight, prior to being diagnosed with CD, I did lose
about 30 kilos just prior to being diagnosed as the Cd had really got bad
and had diarrhea all the time however seemed to have stabilized and have
accepted I will be overweight.. Go ahead and tell your friend to be tested


My son was diagnosed at 15 months. He never had weight loss. As a matter of
fact, his height and weight were off the growth chart from birth and after
introducing solids. Weight loss is not necessarily a symptom.   MA


My daughter and I both are not the typical celiac that looses weight when
ingesting gluten. We are the opposite with extreme weight gain and
constipation.

I did not experience any weight gain, maybe even put on a few pounds during
my diagnosis time. I just had stomach aches and occasional diarrhea, that's
all. She definitely has cause to get blood drawn. If her doctor says it's
not worth it, she should insist or go to another doctor.


Before I discovered I had CD, I was about 20 lbs heavier than I like to be.
The CD was discovered because I had lost bone density, and the normal
treatments didn't stop the loss. When I went gf, I lost the extra weight and
then some. I attributed that to the fact that my favorite desserts were all
wheat-based. :-)   So. Oregon


My daughter,who just turned 17, and recently diagnosed CD did not have any
weight loss. She had the bloating, diarrhea, blood sugar that jumped all
over the place, lethargy, and no energy even though she is a dancer and
danced many hours per week.



I had gain and both of my children were above the growth charts.  We were
all
three diagnosed with celiac.

Absolutely. You can even be overweight and have celiac disease. A year ago I
asked my internist to do the blood panel for celiac, and he laughed, saying,
"Oh, you're too robust to have celiac." Well, I told him to just go ahead
and do it, and sure enough, the antibodies to gliadin were +40. Even after
he agreed (I would have denied payment had he denied my request--not an
HMO), he said, "Oh, you don't want to have THAT and have to eat rice the
rest of your life." I am very adamant about people knowing their own bodies
better than a doctor who spends 10 minutes with them. In deference to the
internist, he did consult with the gastro on staff and they ordered a gene
test. They dragged their feet giving me the results, and when I insisted,
they said, "Well, you PROBABLY don't have celiac." This was because I do not
have the two KNOWN genes on chromosome 6 for celiac. I did not have a
biopsy. I have avoided gluten for the past year and don't have the diarrhea
and muscle spasms that I had. If I accidentally ingest gluten, I know it, so
I am lucky in that respect. I have since managed to lose weight by cutting
way back on sugar and carbs and not eating all those GF baked goods that are
high on the glycemic index, making one prone to diabetes and hypoglycemia.


I was recently diagnosed with Celiac and I am overweight. I did not
experience the weight loss. (I wish I had) Anyway- I had heard or read
somewhere that some don't lose weight as they eat more because they don't
feel full as their body isn't absorbing the nutrients. Not everyone is the
same, and she should let her doctor know that he should know that not
everything is cut and dry. I would think with the stool problem and anemia
that would be enough just to rule it out if the doctor doesn't think that is
it.   in KS


I tested positive by blood test (antiendomysial antibodies) but don't have
any other symptoms...or didn't at the time of screening. I've never had
weight fluctuations related to celiac.
A good GP should at least do blood screening, because it's not that
expensive and it could save a huge amount of hassle later on. Please make
sure your friend understands not to go gluten-free until AFTER the
tests....otherwise the tst may come back negatvie, just because her antibody
levels have dropped because she hasn't been exposed to gluten lately.

She sounds like my mom. I experienced weight loss and severe anemia and
vitamin deficiencies. So after I got diagnosed I begged my mom to get
tested. She showed many of the same symptoms as I did throughout her life,
but instead of weight loss, she gained rapidly. No matter how healthy she
ate, she gained and got sicker and sicker and gained more weight. I kept
telling her to eliminate the gluten but she was stubborn. Until finally, she
got extreme abdominal pains and was admitted to the hospital. I convinced
the doctor to test for Celiac damage. It was extensive. In fact, so not only
was her lining severely damaged, her duodenum was damaged. She required
surgery to replace her duodenum with another system to allow food to enter
in properly. It was a mess. The doctor said it was the most advanced case of
celiac damage one could imagine. She is now gluten free and after a year of
recovery from the surgery, she is healthier than ever before. She has to be
very careful, but the damage is healing. Encourage your friend to get
tested. The worst that she can find out is that Celiac is not the problem
and something else is affecting her. The best is that she could be celiac
and healing could begin soon.


I for one was gaining weight steadily until just before the health crisis
that resulted in being diagnosed. Just between you and me, I weighed 206 lbs
at 5'5". I also had the feeling that something was forcing me to eat. I had
an absolutely uncontrollable appetite even though I was desperate to lose
weight. This excess consumption of food may be a reaction to not absorbing
food properly in part of the small intestine. The first doctor that I asked
to test me for celiac refused on the grounds that I had not signs of
malabsorption. My gastroenterologist later said that you do NOT have to show
signs of malabsorption to have this disease. This is an outmoded idea.
The only clue I had to what was going on was an odd reaction to eating
cereal. I would feel very tired afterward. I suspected a wheat allergy but
dismissed that because I had the same reaction to rice and corn cereals. (I
didn't know about malt flavoring then). It's important to be tested before
you reach a crisis point. I ended up having damage to my spinal cord from
this and now constant nerve pain, which is not fun.
P.S. My ravenous appetite is now gone.

I did not experience any weight gain, maybe even put on a few pounds during
my diagnosis time. I just had stomach aches and occasional diarrhea, that's
all. She definitely has cause to get blood drawn. If her doctor says it's
not worth it, she should insist or go to another doctor.

Just to let you know I did gain weight prior to being diagnosed and i have
seen emails from many others who also gained weight with Celiacs. Everyones
different i guess. I only gained about 1 stone but i definately lost that
since going gf (and now lactose free too).. which is good news of course!!!
Hope your friend gets tested and feels better soon!!

Yes on the weight gain....there's an article on it somewhere on
Celiac.com...good luck to her!

I have only been diagnosed with CD for a little over a month now...I never
experienced any weight loss. I didn't necessarily have weight gain either
but I was anemic, which is what brought all the testing about. I believe
your friend is absolutely justified in asking for the test - I don't think
she needs to be on her death bed to feel ok about being tested for soemthing
that the Dr. may not have considered. As you probably know, there aren't a
lot of physicians that are completely aware of the disease, so please have
your friend ask for the test - it definitely won't hurt and hopefully will
give her some answers.


I'm so sick of docs who will not even consider Celiac if a person isn't rail
thin! It has been proven that not all Celiacs will lose weight and some do
gain or retain excess weight because of it. I am one of those people! We
don't all have the same types of metabolism to start with - hence some eat
like crazy - anything and everything they want - and never gain weight. My
husband is one of those and he is NOT Celiac. From my research, I have found
that some have "survivor bodies". When they are not getting the nutrition
they need, the body stores everything it can as reserves because it thinks
it is starving. It is sort of like when a person goes on a diet - the body
actually slows the metabolism down to save fuel in response to less food as
a survival mechanism. Dr. Joseph Murray, an expert in Celiac Disease wrote
that he had a case of a morbidly obese patient who was biopsy diagnosed with
Celiac Disease. Once completely GF (and that is a TOTAL elimination of all
gluten, even trace amounts) the patient began losing weight. So, tell your
friend to go to her doc armed - Celiacs come in all shapes and sizes!


I gained 40 pounds when I first suffered from cd. I still have trouble with
weight after 30 yrs.

I have had no weight loss from my diagnosed CD. It is possible if you eat a
calorie dense enough diet...and maybe the CD is splotchy. This is not
unusual these days of potato chips and french fries.

I had no weight loss (hard to identify the cause the 10 pounds I have put on
in my 40s) or other symptoms that were obvious to me at the time other than
anemia. My doctor ran the blood tests to "rule out a very unlikely
possibility" as he was looking for the cause of my persistent (even with
iron supplements) severe anemia and BINGO, now no more gluten for me.







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