Re: celiac testing

[Guest guest]

Bear in mind that the "invasive intestinal biopsy" is done as an endoscopy, by mouth, almost always under sedation. The portion of the intestine examined is just beyond the stomach. My doctor always checks for stomach cancer at the same time, as CD and stomach cancer are associated to some degree.

I was completely unaware of anything that went on during the procedure, which I've had done twice, and I woke up feeling well and rested, with no after-effects. No preparation is necessary -- no laxatives.

I had blood tests for CD done before I had a biopsy. They were negative, but the tests often show false negatives. (False positives are very rare, I think.) My doctor felt it very likely that I had CD, although I had no digestive upsets. He suggested I continue with a biopsy, which showed CD. Six months later, as is my HMO's policy, a second biopsy was done to see if I was improving on the GF diet.

You must be eating gluten for either the blood test or the biopsy to give accurate results.

Stool tests for CD exist, but I have no experience with them and can't comment.

Gene testing, as others have pointed out, are another avenue to explore.

Having a formal medical diagnosis of CD, as opposed to self-diagnosis, has great advantages, although it may work against you in terms of getting new health insurance coverage.

Please be aware that CD is NOT an allergy; it's an autoimmune disorder. If you have one autoimmune disorder, the odds are greater than average that you have or will have another, so be aware of the possibility of others. I have three autoimmune diseases at this point.

Harper

In a message dated 8/23/05 9:48:38 AM, douganndowns@... writes:

Sue,

Here is an alternative I tried instead of the invasive intestinal

biopsy.

I have been off gluten for 2 1/2 year--feeling much better the first

year. But then I began having gut symptoms, major fatigue, coughing,

etc., I suspected that I had other food allergies. I did the York

University igG test of 113 foods by mail--it showed allergy to wheat 

and 10 other foods, but showed I can tolerate gluten and rye flour.  I

tested their results on Trader Joe's 100% rye bread and am able to

digest it.  I had been reacting to my own alternative-flour breads

because of the eggs, soy milk and cornstarch--none of which I knew I

was allergic to before taking the test. By rotating the foods after

clearing my system, I should be able to eat some of them once a week.

If you want to check it out, the website  is yorkallergyusa.com.  (They

did take twice as  long as they said they would to get me the

results--7weeks after receiving my blood sample.)

Good luck to you.  It's not easy to follow the diet, but worth it when

you start to feel a lot better.

Anne

[Guest guest]

Before I was diagnosed with celiac disease, I had no overt symptoms. However, I showed many unexplained nutritional problems, such as anemia, osteoporosis, and various vitamin deficiencies. This led my doctor to investigate the possibility of CD. The nutritional problems went away after I stopped eating gluten; even the severe osteoporosis has changed to only osteopenia, a far less severe condition.

Harper

In a message dated 8/23/05 12:12:50 PM, douganndowns@... writes:

Harper,

Thanks for all your excellent information.  What kind of symptoms did

you have?  I would have a sudden drop in heart-rate and temperature, a

feeling I might pass out, sensation in my throat, pressure on my chest

and general fatigue.

Am feeling pretty good now and  I think since I tolerate rye that it

probably is not celiac, however, if the symptoms come back, I'll get

the biopsy.

Sorry about your auto-immune diseases.

Anne

[Guest guest]

Also bear in mind that if you have an intolerance to gluten, it is also possible or likely that you will have other intolerances to other foods. I have been off gluten for months and saw only a little improvement until I started reading a book by Dr. Ellen Cutler on food allergies. I have just begun a food diary to chart what I eat each day and my symptoms. In the meantime, I have discovered possible allergies to eggs, sugar, caffeine and an intolerance to most carbohydrates. This is a good idea for anyone even if you will be seeing a doctor later or not. It is always best to go in armed with knowlege, it speeds the process and makes it cheaper in the long run. You can target your allergy testing to only certain foods.

[Guest guest]

Yes, many of us (me, included) have negative blood tests and positive biopsies. Remember that you MUST be eating a substantial amount of gluten for the blood test or the biopsy to test positive; don't stop eating gluten now if you plan further testing.

Celiac.com is a good source of information about celiac disease and testing. Best wishes.

H.

In a message dated 5/1/07 12:30:17 PM, mac202@... writes:

I recently had the blood test done to test for celiac sprue. It came

back negative. How hard should I be pressing the doctor to do the small

intestine biopsy? Has anyone had a negative blood test but postive

biopsy. The doctor says my health problems are just from being gluten

intolerant only.

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