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Celiac Test Negative...What To Do Next.

Gobbie

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Gobbie Apprentice
Gobbie
Posted

The general medical system disappoints me once again.

After taking about 6tubes of blood out and making me wait a week in agony.

My local doctor simply told me that my test came out negative for celiac.

Though my gluten symptoms are so severe.

My doctor even thought that gluten intolerance is the same thing as celiac...

No knowledge whatsoever on food allergies and intolerances.

Now, I do not know what to do.

I live in London and I am convinced I have Celiac or Crohn's or some sort of bad infection preventing me from eating proper food.

My body is too damaged to go back on gluten diet...

Are there any more tests avaiable (in affordable price) for celiac?

I am so exhausted and fed up......

Can not believe I am more knowledgable on this stuff than the doctors or medical team around me.

How uesless. How uninformative. How cruel is this.

Please, if anyone knows any alternative, accurate, proper, knowledgeable celiac tests in London, please please let me know. I will be waiting.

Thank you so much.

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Wolicki Enthusiast
Wolicki
Posted

It would be helpful if you could post your test results, with the name of each test. Sometimes doctors do not order the full panel.

You could always try a gluten free trial....

ravenwoodglass Mentor
ravenwoodglass
Posted

Does your statement that you spent a week in agony waiting for test results and that you don't want to go back to a gluten diet mean that you have been gluten free. Did you get a good response from the diet? If so keep it up. False negatives are not uncommon, especially if you have been gluten free for a while. Sometimes we have to listen to our bodies and go with what the body is telling us because testing for celiac really leaves a lot to be desired. You don't need a doctors permission to be gluten free. I think that in your country they would give you a 'script' for gluten-free food but would the savings be worth it if it takes years for you to finally get an official diagnosis?

GFinDC Veteran
GFinDC
Posted

You could look at Enterolab testing, but I don't know if the health care system there would accept it. Enterolab is in USA Texas, so it international shipping may not work for it. They could tell you.

There is a test called Biocard from Canada for $50 bucks or so that take a drop of blood and you can to the test at home.

Mot any test requires you to be eating gluten before hand so the antibodies will be active in your blood stream and be detectable though. Enterolab is an exception and they say can detect the antibodies for a while after stopping gluten.

An endoscopy is another test where they take biopsy samples from the intestinal lining. They then inspect the sample for sign of villi damage. Still have to be on gluten for that one too and the results are not 100% reliable either.

rachel-gf Newbie
rachel-gf
Posted

Hello, there.

Well, the good news about the Enterolabs test in the US is that the exchange rate of the pound vs. the dollar will help you. But no, it's not cheap if you pay yourself. You may also want to do genetic testing - I'm not sure what options there are in the UK - to see what your risk level is if it wasn't included in your

There are a significant number of people with biopsy-proven celiac disease who test negative on the blood test. Maybe your doctor could prescribe a biopsy anyway?

https://www.celiac.com/articles/817/1/False-Negative-Serological-Results-Increase-with-Less-Severe-Villous-Atrophy/Page1.html

https://www.celiac.com/articles/1145/1/Lesser-Degrees-of-Villous-Atrophy-Correspond-to-a-Greater-Frequency-of-Seronegative-Celiac-Disease/Page1.html

Or perhaps you have gluten sensitivity and not visible intestinal damage (yet?). A gluten-free diet may still be right for you. I had pretty significant changes gluten-free and glutened, though my Prometheus Celiac Plus Panel showed negative blood test results. I did test positive on the Enterolabs gluten sensitivity test.

Good luck to you. I'm sorry you're sick.

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