Should you be tested for Celiac Disease?

[Guest guest]

To Everybody:

I think I should apologize in advance because this is such a long

post, but I have some information that I think could be very helpful

to some of you. I ended up with pancreatitis because I have Celiac

Disease, which is an autoimmune reaction to the gluten in wheat, rye,

and barley. This autoimmune reaction causes inflammation in the

small intestine, which can damage the Sphincter of Oddi. This is the

outlet from the bile duct and pancreatic duct into the small

intestine. This damage, which may be called SOD (sphincter of oddi

dysfunction) or papillary stenosis, can be treated with a

sphincterotomy. (I know many of you are familiar with this). My

sphincterotomy was done too late, and acute pancreatitis had already

become chronic. According to the article below, 7% of those with SOD

were found to have Celiac Disease (CD). One of the authors, ph

Murray is a very well-known specialist in CD, now at the Mayo Clinic.

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Gastrointest Endosc 1999 Dec; 50(6):823-7

Celiac disease and recurrent pancreatitis.

Patel RS, Johlin FC Jr, Murray JA.

Department of Gastroenterology and Hepatology, University of Iowa

College of Medicine, Iowa City, Iowa, USA.

BACKGROUND: Celiac disease is associated with pancreatico-biliary

disease. Postulated mechanisms include reduced gallbladder emptying

due to impaired cholecystokinin release and pancreatitis due to

malnutrition. We hypothesize that celiac disease may also be

associated with pancreatico-biliary abnormalities due to duodenal

inflammation and papillary stenosis. METHODS: Over a 48-month period,

169 patients referred for possible sphincter of Oddi dysfunction who

underwent pancreatico-biliary manometry were tested for gliadin and

endomysial antibodies. Duodenal and papillary biopsies were preformed

in those patients who were positive. RESULTS: Celiac disease was

diagnosed in 12 (7.1%; 3 men, 9 women). The mean age was 61 years as

compared with 37 years for those patients without celiac disease. All

of the celiac patients had been referred for recurrent abdominal pain

and/or idiopathic pancreatitis. Ten had idiopathic recurrent

pancreatitis with elevated amylase and lipase levels. Two of these

patients also had mildly elevated liver function tests associated

with the abdominal pain. Only 3 of 12 patients had a prior diagnosis

of celiac disease. These 12 patients had manometric evidence of

stenosis and histologic evidence of periampullary inflammation as

well as histologic changes consistent with celiac disease. In 10 of

12 patients sphincterotomy or extension of a prior papillotomy was

performed. Two patients were treated with a gluten-free diet alone.

CONCLUSIONS: We describe 12 patients with papillary stenosis and

celiac disease. In 9 cases the celiac disease was a new diagnosis.

Celiac disease should be considered in the etiology of papillary

stenosis or idiopathic recurrent pancreatitis.

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I think that anyone with SOD (and perhaps anyone with pancreatitis)

should have a blood test for Celiac Disease. As far as I know, this

is NOT standard medical practice and you will NOT receive this blood

test without asking for it. The correct blood test is called a

celiac panel, which actually includes 5 tests: antigliadin IgA,

antigliadin IgG, total IgA, tTG (tissue transglutaminase) and EMA

(antiendomysial antibody). If the blood test is positive (tTG and

EMA being the best tests), the diagnosis is confirmed with a biopsy

of the small intestine, looking for signs of inflammation or villous

atrophy.

There is a very odd situation with CD, in that it has been thought of

as a rare disease in the US, although it is well-known in other

countries. A recent large study, however, has found that 1% of the

adult population in the US has CD, and that it has been extremely

under-diagnosed. Since most doctors aren't up on this information,

they often refuse these tests and you may have to be very insistent

if you want to have it done.

Celiac Disease has many, many possible symptoms, both from

malabsorption and autoimmunity. Some of these symptoms overlap with

those of pancreatitis, such as steatorrhea, weight loss, abdominal

pain and diabetes, so it would be impossible to diagnose your CD

based on symptoms alone. Since CD is an AUTOIMMUNE disease which can

affect many different parts of the body, you may save yourself many

other physical problems down the road or improve the symptoms you

already have if you can get a diagnosis. Celiac Disease can cause

alopecia and migraines, which I have seen mentioned recently on the

list. I'm going to list some symptoms and associated conditions

below. You could have one, several or even none of these symptoms,

but still have Celiac Disease. It also tends to run in families, but

chances are you won't know it because no one in your family has been

diagnosed either. I literally had to figure out what I had on my

own. I asked to be tested and after my diagnosis, my family was

tested as well. My mother, sister and daughter also have this. You

would never know that we all have the same illness, because the

symptoms are different in each of us. My mother has anemia and

osteoporosis, my sister psoriasis, my daughter food allergies and

asthma. I had joint pain ( " fibromyalgia " ), " irritable bowel

syndrome " and nerve pain that turned out to be a lesion in the spinal

cord (misdiagnosed as MS) as well as pancreatitis. We all had

fatigue, which seems to be the most common symptom.

Below is a list of symptoms of Celiac Disease, and some associated

conditions. I realize that this list may almost seem ridiculous,

because many people will have at least one of these things, but this

condition is for real. CD causes a small percentage of many

different illnesses. For more info, see www.celiac.com

If you recognize yourself or family members, please ask to be tested!

Feeling bad after eating some wheat, rye or barley products

(including the barley malt flavoring in rice or corn cereal) (this is

often not noticeable or very mild)

Fatigue, Chronic Fatigue Syndrome

Addison's Disease

Alopecia

Anemia

Asthma

Lymphoma

Depression

Dermatitis Herpetiformis (a very itchy skin rash)

Diabetes

Diarrhea

Joint pain, Arthritis

Fibromyalgia

Gallbladder pain

Elevated Liver enzymes

Liver Disease

Infertility and Premature Births

Neural Tube Defects

Headaches

Lactose Intolerance

Many Neurological problems, such as epilepsy, ataxia, neuropathy

Osteomalacia

Osteoporosis

Psoriasis

Schizophrenia

" brain fog "

dementia

Sjogren's syndrome (including dry eyes)

Thyroid Problems (Hi or Low)

Syndrome

Down Syndrome

Vitiligo

I can provide more references on the association of CD with many of

these symptoms. If anyone wants more information, please email me.

--Diane Hosek

dianehosek@...