Sterling

Thank you, Jmg. I was lucky with the consultant who had a research interest in this area. He was persistent in exploring all avenues when he and his team were perplexed by the inconsistency of the results. It does seem that you can have all of the clinical pointers and still have negative biopsies (even well down into the jejunum). The diet has...

The outcome of the long investigations is that the consultant/professor says that I am unequivocally on "the coeliac spectrum" based upon many tests. However, surprisingly the biopsies including those from the jejunum are all negative. The outcome was that I could remain on a gluten diet but return annually for further investigations. I asked the professor...

Unfortunately, the National Health Service does not volunteer providing patients with the blood test result data. I understand that the EMA test was negative but the other blood results taken four times over a year combined with the genetic test are sufficient to indicated that I am "on the coeliac spectrum". This does not mean apparently that the coeliac...

Thank you, jmg. Yes, I am in the UK. I was investigated first in the private medical system and then in the National Health Service for the more specialist work. All in all I have had six biopsies taken from the duodenum (by endoscopy) and eight biopsies from taken form the jejunum (by enteroscopy). I am satisfied that the negative biopsies are correct....

I will post here to assist future searchers with similar issues. I visited a registrar today for a follow-up consultation on the double balloon enteroscopy. Four biopsies were taken from each two sites in the jejunum (third part). The biopsies are all negative. Hence the results are consistent with the previous endoscopy (higher up!). However,...

Hello Estes In my case my blood test are not extreme deviations from normal, but are consistently significant deviations across several repeated tests over time. I am also positive on the genetic test. The consultants tell me that I am "on the coeliac spectrum". I had already had the endoscopy and a colonoscopy so this is a third attempt to seek out...

Thank you, all. I am learning more about this all the time. The university hospital is concerned about the disparity between the blood results and the biopsies from the duodenum. They have re-iterated that I am on the "coeliac spectrum". I understand that the biopsies have been taken from sites quite deep into the jejunum. The enteroscopy was conducted...

With negative biopsies from both the stomach and duodenum from a previous endoscopy, I had my enteroscopy yesterday with four biopsies taken from each of two sites in the jejunum. I now await results.

Thank you, all. I will post the answer because it may help someone else in the future. I visited the consultant today and have a little more information. I confirmed to her that I was on a heavy gluten diet presently. She told me that the enteroscopy was essential because I am on the "coeliac spectrum" albeit that the biopsies from the endoscopy were...

Sorry, but absolutely not! The procedure is a step beyond endoscopy.

By putting the search term "enteroscopy +celiac" into Google, I got a mere 13 results. The term "enteroscopy +coeliac" yields a mere 4 results. It seems therefore that an enteroscopy procedure in conjunction with celiac disease is uncommon. I am seven months now into the diagnosis cycle with positive blood tests but negative biopsies. I had...

I think, squirmingitch, that you well understand my frustration. The overseeing consultant at the university hospital that I am attending is a leading celiac researcher so the approach in my instance may well be non-standard. I have considered just calling it a day and moving onto the non-gluten diet, but this is tempered by my concern that I should...

Thank you, squirmingitch This is pretty much where I stand after a great many investigations except that I have had the endoscopy and the colonsocopy and it is an enteroscopy that is proposed. The celiac experts are absolutely certain that I have celiac disease based upon now two repeats of a wide variety of blood tests despite the normal biopsies....

I have recently been treated privately but my case has been referred to specialists within the English National Health Service (NHS). It is very difficult to get detailed results sheets when under NHS care. When you pay you can get what you ask for. However, today they confirm a diagnosis of Coeliac Disease notwithstanding normal biopsies. However, they...

Thank you, Celiac Nutritionist, for taking you time to respond to my posting. The gastroscopy indicates duodenum normal. Two biopsies taken at the "bulb" and four biopsies taken at the "second part". I do not have the pathology report. But I was told that the biopsies were normal. The gastrologist has passed me over to a coeliac consultant. The...