Celiac Antibodies NOT found, any thoughts?

[collagastritis84]

Hi all ive been diagnosed with Collagenous Gastritis and suspected MC. My blood test for CD was negative and i was not gluten free at the time, any thoughts? Gluten free diet seems to help at first but i still am quite ill a month later. My dr didnt mention i had small intestine damage when he preformed my upper endoscopy. But i will see him tomorrow and will ask him for the pathology report for my biopsy

[kimtg68]

I'm new to all this, ibrown, so unfortunely I won't be able to offer much advice. I'm sure some of the other more experienced and knowlegable ppl here will be able to. I just wanted to share that I too need to ask for my pathology report of my biopsy. My GI only told me after the colonoscopy/endoscopy that I tested positive for Helicobacter Pylori. Treated me for it and when I was back in his office a month and a half later he THEN informs me that I also tested positive for MC. So, yes, please do ask for you pathology report as I will as well.

[tex]

You can only test positive to those classic celiac blood tests if you have fully-developed celiac disease, which very few of us here have. The reason for that is that for the first few years of the disease, the antibodies are pretty much confined to the intestines, and cannot be found in the blood, until celiac disease has matured.

It usually takes several months for the GF diet to bring remission. In fact, in most cases it takes from 6 months to a year. Also, unless you are avoiding 100% of all your food intolerances, remission is not possible. Most of us are sensitive to the casein in all dairy products, in addition to gluten, and about half of us are sensitive to soy, and all it's derivatives. If the diet seemed to help at first, then you are probably on the right track.

Tex

[Stanz]

To add to what Tex said, from my research about 80% of those whose symptoms led them to be blood tested for celiac disease in the first place, would have tested positive for gluen sensitivity if they had done the genetic test. Thus, IMO, the blood test (which I also did and was negative on) should be replaced by the genetic test. It's not a big difference in $, but it is making Mayo Clinic $.

[Joefnh]

In my case I tested negative for celiac during a blood test in February, but I can tell you that gluten makes a big difference with my symptoms.

--Joe

[tex]

To add to what Tex said, from my research about 80% of those whose symptoms led them to be blood tested for celiac disease in the first place, would have tested positive for gluen sensitivity if they had done the genetic test. Thus, IMO, the blood test (which I also did and was negative on) should be replaced by the genetic test.

You mean the stool test, don't you? The genetic test is a cheek swab test based on DNA material.

Tex

[Stanz]

No, I meant the cheek swab test from Enterolab. Unless I am mistaken, the stool test is the test that shows if you have an active reaction to gluten and other antigens. Maybe I'm wrong, I'm too tired to research this right now.

[tex]

No, you're right about the distinction between the tests. However, the gene test does not, (and cannot), detect gluten sensitivity - it can only show the potential for gluten sensitivity. In order for gluten sensitivity to actually become a reality, some physical event has to trigger the genes. That's why the stool tests, (or blood tests), are necessary, in order to confirm whether or not the genes, (and therefore, gluten-sensitivity), have actually been triggered. Many, many people are carrying celiac genes, (or non-celiac gluten-sensitive genes), but they are not gluten-sensitive, because the genes have never been triggered, (not yet, at least).

IOW, in physical/mathematical/engineering terms, the presence of at least one gluten-sensitive gene, is a necessary condition, for the onset of gluten-sensitivity. However, it's mere presence is not a sufficient condition for the development of the disease - an external triggering event must also occur, in order for that transformation to take place.

Tex

[collagastritis84]

I found out that my dr never did a small intestinal biopsy..Iam pretty disappointed in him I thought it was standard procedure..although he was looking for the cause of my upper gi problems at the time prob didn't think it necessary

[tex]

Well that's a heck of a note. Shame on him. I also thought that biopsies were SOP for an upper endoscopy. There's not much of any value that he could confirm, or rule out, without biopsy samples, so I don't understand what on earth he was thinking, (if he was, indeed, "thinking", at all). What on earth did he think you, (or your insurance company), were paying him for?

Tex

[collagastritis84]

I know he seemed shocked that I was inquiring about small bowe
..I even asked them as was being wheeled into the OR about all my symptoms being caused by celiac and they just brushed it off...I dont think some drs like having patients that are soo educated on the matter..when your sick and stuck in the house for a year all you can do its research :-)

[tex]

You're right - a lot of GI docs especially, resent patients who know more about the disease than they do. To me, that would be a wake-up call that I need to learn more about the disease, but that never seems to dawn on a lot of specialists, because they have a certificate, collecting dust on their office wall, that proclaims them to be an "expert" in their field.

Tex

[kimtg68]

That's been my experience through this. EDUCATE myself as best I can. You are So correct in saying that most doctors do not like the patient knowing more on the particular subject then them. AND if it were me and my so called subject of which they carry a degree and are supposed to know so much yet find patience that know more..I would want to dig my heals in and learn more as well. Let's hold hope that as we as patience become more educated that perhaps we can lead our doctors to do the same.