Enteroscopy

[Sterling]

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 had the endoscopy and the colonoscopy  and now await the enteroscopy.

Has anyone here experienced an enteroscopy?

 

 

[frieze]

endoscopy is the word that you want.

[Sterling]

1 hour ago, frieze said:

endoscopy is the word that you want.

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

[kareng]

Why do the doctors say you need any further procedures?  Usually an endoscopy with positive biopsies and a positive blood test are all that is needed to diagnose Celiac. Keep in mind that usually, Celiac damage is at such a small level that a camera won't show it.  What else are they looking for? 

 

Edit - such re- read and saw that your biopsies were negative.  They must think there is some damage in the middle they want to get at that they couldn't with the endo and colonoscopy? 

 

See, usually, if you have Celiac, it is most likely they will find damage in the top part of the small intestine. So there is no need to dig further.  It  is possible that they just missed the places with the damage wen they biopsied, too

[kareng]

Another thought - if you are currently eating gluten free - this treasure hunt might be a dud. 

[SLLRunner]

6 hours ago, frieze said:

endoscopy is the word that you want.

Open Original Shared Link is some information on the enteroscopy. Endoscope is part of the procedure, but it's more intensive testing.

[Sterling]

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 all negative.

She told me that the probability of finding changes in the intestinal lining is far greater in the jejunum. Hence the enteroscopy (using double balloons) moves far deeper into the intestine. Should changes be visual (as they may be) then biopsies will be taken from the relevant areas, otherwise biopsies will be taken anyway.

Should the biopsies be negative then I will return to a normal diet. I think that her expectation is that I will be coeliac.

Enteroscopy is a far longer and more specialist procedure. Arranged for two weeks' time.

Regards, Sterling

   

   

 

[Sterling]

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.      

[cyclinglady]

1 hour ago, Sterling said:

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.      

Thanks for the update.   I sincerely hope you find answers!  

[squirmingitch]

Me too.

[kareng]

3 hours ago, Sterling said:

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.      

I would love to hear the results of he biopsies when you get them.  The fact that your doctor would go this extra step is incredible.

[Sterling]

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 by a professor who has researched coeliac disease.

Indeed, I am very lucky that such great care is being taken to explain the reasons for the repeated blood results combined with anaemia.

I will post when I know more.

Regards, Sterling

 

  

    

 

[Estes]

This is a very informative thread.  I wanted to add what my Dr. told me.  She said because my Iga was very high and my Igg was positive, no other testing is needed.  I understand that this is different from what most of you have been told.  I have asked no less than 3 times for an endoscopy or GI consult.  She is insistent that a Yes is a Yes.  She said based on my blood work, I am celiac.  No other info needed because we have a Yes.  I will be able to do further testing at the 3 month mark.  She won't agree to it now because we have our Yes already.

Based on what she is telling me I can I vision a future where the blood work is more readily used.  If that is all it takes, maybe more celiacs will be diagnosed.  If it is noninvasive, not too expensive, and reliable, maybe we are on the brink of it being a standard screening tool.  I can only hope.  I know too many lethargic anemic living without answers.

Sterling, I don't know your whole story but is it possible that you have your Yes already?

[Gemini]

6 hours ago, Sterling said:

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 by a professor who has researched coeliac disease.

Indeed, I am very lucky that such great care is being taken to explain the reasons for the repeated blood results combined with anaemia.

I will post when I know more.

Regards, Sterling

 

  

    

 

With positive blood results and anemia, this is most likely Celiac Disease.  Your doctors are just behaving as doctors do and hinge everything off of the biopsy.  I hope they find evidence of Celiac after all these biopsies because then you can get on with your life and get rid of that anemia!  If not, then its just another case of patchy damage they have not hit the sweet spot on.  I hope they do not tell you to continue eating gluten when clearly, you need to avoid it.

Good luck with all the results!

[Sterling]

18 hours ago, Estes said:

This is a very informative thread.  I wanted to add what my Dr. told me.  She said because my Iga was very high and my Igg was positive, no other testing is needed.  I understand that this is different from what most of you have been told.  I have asked no less than 3 times for an endoscopy or GI consult.  She is insistent that a Yes is a Yes.  She said based on my blood work, I am celiac.  No other info needed because we have a Yes.  I will be able to do further testing at the 3 month mark.  She won't agree to it now because we have our Yes already.

Based on what she is telling me I can I vision a future where the blood work is more readily used.  If that is all it takes, maybe more celiacs will be diagnosed.  If it is noninvasive, not too expensive, and reliable, maybe we are on the brink of it being a standard screening tool.  I can only hope.  I know too many lethargic anemic living without answers.

 

 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 positive biopsies.  Perhaps your blood results are far more marked than mine. 

    

 

[Sterling]

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, the registrar confirmed that I am "on the coeliac spectrum".

I can now eat gluten or avoid gluten as I wish.

I had blood tests taken yet again today. I have to return in three months and again in a year for monitoring. I have to eat gluten for two months prior to the test in a year's time.

The blood tests and the genetic indicate that I am coeliac according to the doctors but the biopsies indicate that my system is unaffected. It is a state of limbo.  

I am minded to follow a coeliac diet which is not a great hardship for me. 

      

[Jmg]

Thanks for posting the follow up Sterling, like others I found this topic very interesting and it should prove useful to others. Certainly for me, I had a negative endoscopy but am left wondering if damage may have taken place further down the intestine.

Are you in the UK by any chance?

Do you have any other symptoms that might be attributable to coeliac?

 

 

[Sterling]

22 hours ago, Jmg said:

Thanks for posting the follow up Sterling, like others I found this topic very interesting and it should prove useful to others. Certainly for me, I had a negative endoscopy but am left wondering if damage may have taken place further down the intestine.

Are you in the UK by any chance?

Do you have any other symptoms that might be attributable to 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. The colonoscopy was uneventful. However, the consultant still appears to be bemused by the positive blood results not correlating with the negative biopsies. The result seems that I am coeliac positive but that I do not need to follow a gluten free diet. In consequence, monitoring will be required to ensure that coeliac conditions do not develop. I am told that this can happen at any age, even very late in life. My only real symptom has been anaemia.

I am minded to follow a gluten-free diet albeit that I have not been directed to do so. This is a case of the medics being far from dismissive: they could not have been more attentive. I return in three months for further blood test results and in another year for further investigation.

[Sugarcube]

Sterling, please can you advise which blood tests had indicated Celiac?

False positives are possible with ttg, but the EMA endomysial test is supposed to be near 100% specific for celiac.

[squirmingitch]

Sterling, please continue to update when you do your follow up testings. This is indeed fascinating. You are so very fortunate to have doctors who didn't shut down the minute your endoscopy was negative. I'm impressed!

[Jmg]

19 hours ago, Sterling said:

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.  

 

When you mentioned the university I wondered it it was Sheffield, that was where I'd planned to contact before I gave up on the diagnostic process. Wherever it was I'm impressed with their diligence, it's good to know that there's this level of expertise available here. 

 

19 hours ago, Sterling said:

  The result seems that I am coeliac positive but that I do not need to follow a gluten free diet. In consequence, monitoring will be required to ensure that coeliac conditions do not develop. I am told that this can happen at any age, even very late in life. My only real symptom has been anaemia.

I am minded to follow a gluten-free diet albeit that I have not been directed to do so.  

That sounds sensible.  If you find any changes upon excluding gluten I hope you can note them here.  When I changed my diet I found a lot of hitherto seemingly unrelated changes resolved or greatly improved. An unexpected but welcome bonus which I try and remember when I fancy a kitkat or cheesecake.

Best of luck with the new diet! 

[Sterling]

On 6/7/2016 at 9:52 PM, Sugarcube said:

Sterling, please can you advise which blood tests had indicated Celiac?

False positives are possible with ttg, but the EMA endomysial test is supposed to be near 100% specific for celiac.

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 disease has caused the anaemia. It does mean that at any age I might start to suffer malabsorption and damage to the intestines. The medics seems to be concerned that I am coeliac  but conclusively do have negative biopsies.  They do not consider that a gluten-free diet is necessary, but do not object to me eating as I wish. The proviso is that I eat gluten for two months prior to my follow-up visit in a year's time.   

[Sugarcube]

Sterling - in London my NHS hospital was happy to provide copies of blood tests & the biopsy to my GP. I was then able to obtain the results via the GP.

The EMA test is actually the most specific for celiac, whilst the genetic test has no diagnostic value, as 25%-40% of the general population will test positive. The genetic test only has some value for ruling out celiac

The Ttg IGA test can can be falsely positive for celiac if you have other auto-immunue conditions or certain infectious conditions. 

The fact that your biopsy was normal with negative EMA, would suggest that your GI needs to consider the differential causes of a false poistive ttg. 

 

[Sterling]

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 whether I could just go for the gluten free diet and have the case closed. He agreed that I could follow that approach.  My GP thought that my decision to go gluten-free was a good and pragmatic choice. No one wants year on year endoscopies/enteroscopies unnecessarily.  

[Jmg]

45 minutes ago, Sterling said:

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 whether I could just go for the gluten free diet and have the case closed. He agreed that I could follow that approach.  My GP thought that my decision to go gluten-free was a good and pragmatic choice. No one wants year on year endoscopies/enteroscopies unnecessarily.  

Thanks again for returning and updating this thread with the results and your decision. Much of the value of this site in my view lies in case histories like yours, examples for others of how problematic it can be pursuing definitive answers. 

I read your posts with interest due to my own negative endoscopy and sneaking worry that damage had been missed elsewhere in the intestine. I think your decision is a good one and hope that you find adjusting to the diet goes well. 

Best of luck!