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Chris E

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Chris E Rookie
Chris E
Posted

Hi All!

I have been having symptoms simiar to those of celiac for over a year now and have been investigated by tow GI's who have both came to the conclusion of IBS. I know that in the UK celiac is often underlooked and that doctors often do not carry out the required blood tests.

My recent letter from a GI reads:

"Bloods are entirely normal and include antiendomysial/anit TtG anitibody which effectively excludes coeliac disease".

My questions - should other blood tests have also been done?

Anyone?????

Thanks

Chris

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jmd3 Contributor
jmd3
Posted

Were you eating wheat/gluten continuously at the time of the blood tests?

happygirl Collaborator
happygirl
Posted

Open Original Shared Link

"Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level."

"Seronegative celiac disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32]. "

So, a negative tTG does not 100% rule out Celiac.

Chris E Rookie
Chris E
Posted
  • Author

Yes i had been eating wheat at the time of the blood test -I'm still yet to try the gluten free diet. I would prefer to positive diagnosis frst.

So does this mkean that i have had all of the blood tests that are recommended? Sorry i'm still confused.

Chris

happygirl Collaborator
happygirl
Posted

You'd probably have to see your records to determine which blood tests were done, since your dr. doesn't mention any others.

Chris E Rookie
Chris E
Posted
  • Author
You'd probably have to see your records to determine which blood tests were done, since your dr. doesn't mention any others.

Thank you! I do believe that that was the only celiac bloodtest i have had and doctors here in the UK are not very helpful at all really. I just don't know where to go next - i was hoping that celiac disease as going to be my problem because it would have been an explanation for all of my symptoms. I have also had a white cell scan that highlighted possible inflammation of the small intestine and also thought that could be an indicator to celiac disease, but the GI said that the scan findings were nothing serious.

GRRRRRRR!!!!! I just don't know where to go now

Chris

nora-n Rookie
nora-n
Posted

Chris, if you are aboe to access the bmj online at all, there are some really good articles about celiac there, and one in particular is about seronegative celiac disease. Sometimes the antibodies take many years to turn positive, even after total villous atrophy.

The only valid test here in europe is a biopsy. even a negative biopsy does not exclude celiac!! The disease is pathcy and they might easily miss it with just a few random samples.

My daughter has an officila celiac diagnosis with both negative biopies and bloodwork, and I am in Europe too, and she gets money form the health system to help with the extra costs of gluten-free food just like any other celiacs here with a diagnosis.

I have negative tests too but found out later that the tests problably were done too early, and that I should have eaten much more gluten. Much more. One should eat at least 30 g per kg per day for at least 6 weeks, likely rather like 3 months before the tests. I was only gluten light and they did not draw any more bloods after the 5 weeks back on gluten before the biopsy....should have been 3 months on gluten probably.

nora

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