to S.

[Guest guest]

At 08:48 AM 2/12/2001 -0500, you wrote:

>I had an endoscopy and colonoscomy done at the same time and there were a

>lot of biopsies taken- they were very thorough because he thought at first I

>had esophageal cancer! I do not however feel like the Dr. took me seriously

>about the possibility of celiac, although he swears they did check through

>all these biopsies. Is there another test that can be run? I definitely have

>a lot of the tell-tale signs, I had my gall bladder removed in Aug., I have

>lost 32 lbs. in a 2 month period due to diarrhea, which by the way I did not

>need to loose, I am chronically tired, lactose intolerant, and so much more!

>As a child they were always testing me for anemia because I was so little

>and sickly looking. Any suggestions at all would be greatly appreciated. It

>is a hard diet to follow 100% for myself and maybe a diagnosis would put

>enough fire under my butt to make me stick to it. With we see the

>reaction to any gluten or casein and the price is too high to pay for a slip

>up so we are extremely careful to the point of paranoia with her food!

>Thanks in advance for your support and advice.

If you're not sure you have celiac, read this...I hear literally hundreds

of stories like this. I answer email like this so often I have a stationary

set up so I don;t have to keep typing it.

This is NOT medical advice but:

The symptoms you have described are exactly what you'd expect.

Common symptoms: anemia, chronic diarrhea, weight loss, fatigue, cramps &

bloating, irritability

VERY often people with undiagnosed Celiac are called " sickly "

Celiac " disease " is not actually a disease...you can't " catch " it. It is an

immune system related intolerance to gluten proteins found in Wheat,

Barley, Rye and Oats. When ingested in even small amounts, these proteins

cause damage to the villi (the lining of the intestine) which are the

structures that absorb nutrients and vitamins from food. These finger like

structures (villi) flatten and stop absorbing nutrients. It is actually

possible to starve to death while eating a great deal of food.

The condition can manifest itself in many ways, from symptoms that are

almost impossible to detect to life threatening dehydration and weight

loss. The condition can also change from mild or chronic to acute without

warning and pose a serious threat to life.

The problem with Celiac diagnosis is that MANY doctors do not know what it

is or they believe that it is only a disease of children ( " failure to

thrive " is often celiac disease). In fact, one of the most common

" symptoms " is the doctor's lack of any idea as to what is going on.

My mother was called everything from a hypochondriac to an excessive

worrier to and alcoholic and underwent almost every test they could think

of, before she was diagnosed. This took at least 15 years and was only

precipitated when her condition went from chronic to acute (she lost about

35 pounds in a few short weeks...and she didn't have much to lose to start

with) Finally, after a change to a new doctor, one visit and one test later

she was diagnosed and within a couple of weeks she was feeling better than

she could ever remember.

I've heard stories of doctor's removing parts of colons, gallbladders,

spleens and all other less dramatic misdiagnoses. When you go to celiac

meetings as I do, the single most common thread is that of misdiagnosis,

years of needless suffering and lasting health problems as a result of

misdiagnosis. While celiac is easy to treat with a gluten free diet for

life, untreated celiac can cause lasting damage to the body as a result of

this silent starvation and even celiacs on a gluten free diet deal with

lingering effects such as osteoporosis, elevated bowel cancer risk,

neurological damage, depression, chronic fatigue and others.

IF you have any doubts you should get a referral to a gastroenterologist

who knows what celiac is and knows how to diagnose and treat it. Tell her

not to take no for an answer until she has had the tests done. There are 2

tests available. One is a blood screening test, which is not 100% accurate

but can be a good indicator, and a small bowel biopsy (relatively minor

procedure...not as bad as it sounds), which is the definitive test. A word

of caution though. Even though Celiac may be suspected, do not go on a

gluten free diet until AFTER the tests have been done, as going gluten free

will invalidate any test results. "

Sound familiar?

I do infer from your post that you are already at least partially GF. If

this is the case, any test results may be inaccurate. You need to be

ingesting gluten for the biopsy to be reliable.

Bottom line is drastic weight loss and the symptoms you describe are

indicators of Celiac. Get a second..or third opinion..or fourth...until you

get an explanation that satisfies you. CD is one of the most misdiagnosed

conditions there is and many, many doctors get it wrong. Untreated CD is a

serious health condition...don't let yourself be at risk.

----------------------------------------------

Jay Bigam

Marketing and Information Technology Manager

Kinnikinnick Foods Inc.

www.kinnikinnick.com

Toll Free: 1-