Biopsy results over the phone

[Kelly1920]

I have an appointment for my biopsy results to be given over the telephone in two weeks time, having been in for the biopsies this week. Is this likely to mean it is negative? Or are telephone results normal? 

I had positive TTg and a weakly positive EMA blood test but no visual damage on the endoscope to the naked eye. 

What questions should I ask during the telephone consultation? 

Had symptoms for around 12 years - went gluten free for two months at a friend’s suggestion and did feel better- and then did the gluten challenge for three weeks for biopsy and blood tests, after my doctor begrudgingly agreed to test for it. I’m in the UK. 

[plumbago]

"Did you see anything on endoscopy that could explain my symptoms?"
"How did my esophagus look?"

Also there's something called the Marsh scale which you may want to familiarize yourself with to see if where the results fall on that scale (if they do).
Generally I would surmise that because it's a phone appt that does mean your results are likely negative, but could it be that with Covid they are trying to limit exposure and are doing everything over the phone?

Others should have something to add, as well.

Good luck.

[Scott Adams]

Just know that your blood test results may be telling you the answer. Over the years many in your shoes with positive blood tests but negative biopsy results decide to continue to eat gluten, only to realize later that gluten causes them serious issues. The gut damage is typically considered the final stage of celiac disease, and it’s best avoided.

[trents]

I'm not sure that "no visual damage on the endoscope to the naked eye" is good enough. Did they not do a biopsy and look at it at the microscopic level? I would be encouraged by he naked eye analysis only if it stood in stark contrast to obvious damage in previous endoscopies.

[Kelly1920]

1 hour ago, trents said:

I'm not sure that "no visual damage on the endoscope to the naked eye" is good enough. Did they not do a biopsy and look at it at the microscopic level? I would be encouraged by he naked eye analysis only if it stood in stark contrast to obvious damage in previous endoscopies.

They took six biopsies. I’m hoping they will be able to give me some confirmation from that in the telephone appointment they’ve arranged for a couple of week’s time.

The fact that there’s no visible damage and that everything looks “normal” should be encouraging, I suppose. 

[DJFL77I]

i dont think you can see villi damage with naked eye

[plumbago]

30 minutes ago, DJFL77I said:

i dont think you can see villi damage with naked eye

FWIW, my GI met with me minutes after my 'scope and said he could tell there was damage, which was likely a result of villi blunting.

[Kelly1920]

6 minutes ago, plumbago said:

FWIW, my GI met with me minutes after my 'scope and said he could tell there was damage, which was likely a result of villi blunting.

Yeah- my colleague was diagnosed on the spot, by sight, after the endoscopy. So I took the comment of “normal” as a positive sign that it might not be coeliac.

[DJFL77I]

Mine saw nothing.. until biopsy saw it..

[cyclinglady]

It depends on the type of scopes.  My endoscopy looked fine, but biopsies revealed some severe damage.  The magnification on the scope used on my follow up was tremendous.  You could visually see villi.  But my GI still took biopsies.   You have to wait for the pathologist’s report.  And doing thing over the phone?  Normal.  My biopsy results were done over the phone seven years ago.  More recently, an email.  My kid just “saw” her doctor on the phone.  Times are changing.....

[Kelly1920]

2 hours ago, cyclinglady said:

It depends on the type of scopes.  My endoscopy looked fine, but biopsies revealed some severe damage.  The magnification on the scope used on my follow up was tremendous.  You could visually see villi.  But my GI still took biopsies.   You have to wait for the pathologist’s report.  And doing thing over the phone?  Normal.  My biopsy results were done over the phone seven years ago.  More recently, an email.  My kid just “saw” her doctor on the phone.  Times are changing.....

Guess I will have to wait and see! 
Thank you for sharing! 

[docaz]

On 8/29/2020 at 4:46 AM, plumbago said:

FWIW, my GI met with me minutes after my 'scope and said he could tell there was damage, which was likely a result of villi blunting.

 

On 8/29/2020 at 5:03 AM, DJFL77I said:

Mine saw nothing.. until biopsy saw it..

 

On 8/29/2020 at 4:15 AM, DJFL77I said:

i dont think you can see villi damage with naked eye

This is absolutely true. Villi or so tiny that they are far too small to be seen by the eye no matter what scope is used. The endoscopy can show redness or ulcerations of the esophagus, stomach and small intestine but it is absolutely impossible to diagnose blunted villi or celiac disease from that. There are many, many conditions that cause changes in GI tract and celiac disease is in fact one of the less common ones. Stomach ulcers and inflammation unrelated to celiac disease is much more common. Furthermore in order to diagnose celiac disease not only do you have to see what is on the surface but also the type of white cells that are in lining of the small intestine. In my opinion, it is also a very fine line what a doctor should or should not say right after the scope in particular since there is a lot of unknown until the tissue is examined. I perform a good number of biopsies (in a different area) and I am often looking for cancer and I am very thoughtful what I say not to put someone through emotional distress or giving false hopes. 

[plumbago]

@docaz Just to be clear, the part you quoted from me says damage done likely as a result of villi blunting. This was the doc said to me at the endoscopy center right after my EGD (ie, before biopsy results): "Good chance of having Celiac. Lining looks a little atrophic. Will have to wait until bx comes back." The report's finding (under "Findings") has: "In the duodenal bulb and 2nd duodenum no villi were seen." This was in the prelim and final reports.  As an experienced endoscopist yourself, perhaps you can parse the meaning of that, I'm just sharing what my own doctor said to me and what was in the reports, 10 years ago.

[docaz]

1 hour ago, plumbago said:

@docaz Just to be clear, the part you quoted from me says damage done likely as a result of villi blunting. This was the doc said to me at the endoscopy center right after my EGD (ie, before biopsy results): "Good chance of having Celiac. Lining looks a little atrophic. Will have to wait until bx comes back." The report's finding (under "Findings") has: "In the duodenal bulb and 2nd duodenum no villi were seen." This was in the prelim and final reports.  As an experienced endoscopist yourself, perhaps you can parse the meaning of that, I'm just sharing what my own doctor said to me and what was in the reports, 10 years ago.

I want to make sure that you do not mislead you. I do not do endoscopies but work in the head and neck and the mouth areas.

What the doctor probably meant to say is that the surface appeared smooth and very shiny rather than the typical velvet-like texture that one expects if the villi are present. The difference in wording might sound like semantics but it is not. In any case, the actual biopsy report is the most important one. (When my kids were diagnosed, I actually requested the images of the pathology slides and the pathologist was actually very happy to go over them with me). In addition to blunted villi, there has to be also a certain type of neutrophilic infiltrate (specific white blood cells in the lining) visible under the microscope. Misdiagnosis in particular when the pathologists are not experienced is quite common. For that reason, for diagnosis itself the blood tests are very important and possibly even more important than the biopsy (but prominent experts disagree on this). Even if the biopsy is negative and the blood tests are positive a gluten-free diet is recommended by most clinicians. The biopsy is most important in case follow up biopsies are performed to evaluate the healing (or lack thereof) the disease. Here is a paper that is a little hard to read but you can see in table 2 other conditions that can mimick celiac disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5587842/ . That said, there are newer scopes that have a very high magnification and the resolution is constantly improving and it would not be inconceivable that sometimes soon villi could be seen. 

[cyclinglady]

I had an endoscopy two years ago.  My GI could see the villi.  Me too, because he gave me photos to celebrate my healing.  Of course, he still submitted biopsies to confirm.  
 

This is not my photo, but it looked like this:

https://www.sciencephoto.com/media/609573/view/small-intestine-endoscope-view

Again, my new GI has the most current equipment.  My diagnosing GI had an older model (2013)  which could not see villi.  I had to wait for the biopsies to confirm.  

[cyclinglady]

4 hours ago, docaz said:

I want to make sure that you do not mislead you. I do not do endoscopies but work in the head and neck and the mouth areas.

What the doctor probably meant to say is that the surface appeared smooth and very shiny rather than the typical velvet-like texture that one expects if the villi are present. The difference in wording might sound like semantics but it is not. In any case, the actual biopsy report is the most important one. (When my kids were diagnosed, I actually requested the images of the pathology slides and the pathologist was actually very happy to go over them with me). In addition to blunted villi, there has to be also a certain type of neutrophilic infiltrate (specific white blood cells in the lining) visible under the microscope. Misdiagnosis in particular when the pathologists are not experienced is quite common. For that reason, for diagnosis itself the blood tests are very important and possibly even more important than the biopsy (but prominent experts disagree on this). Even if the biopsy is negative and the blood tests are positive a gluten-free diet is recommended by most clinicians. The biopsy is most important in case follow up biopsies are performed to evaluate the healing (or lack thereof) the disease. Here is a paper that is a little hard to read but you can see in table 2 other conditions that can mimick celiac disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5587842/ . That said, there are newer scopes that have a very high magnification and the resolution is constantly improving and it would not be inconceivable that sometimes soon villi could be seen. 

Are you a dentist or oral surgeon?  If yes, why is dentistry still separate from medical?  

[docaz]

1 minute ago, cyclinglady said:

Are you a dentist or oral surgeon?  If yes, why is dentistry still separate from medical?  

I just learned something from you and I looked it up. Indeed with the newer scopes that use a camera chip you can magnify enough to see the villi. In my practice, I use magnification but through a microscope and not endoscopes. 

I am an oral maxillofacial surgeon. I started my training in Germany before moving to the US and I went to a special double degree program to medical and dental school because in many countries they distinguish between oral surgery which is a specialty of dentistry and maxillofacial surgery which requires a dental and a medical degree.  In the US, some oral surgeons have a medical degree and some do not. I think that it makes a lot of sense for general dentistry to be a separate field from medicine because the knowledge and skills to be a trained clinician are different and the training is quite long as it is and there is no point in wasting time and resources to train someone for something that they will never use. As the two professions become more and more technically advanced and specialized, I think that they will stay separate. 

[cyclinglady]

@docaz

Thanks for the explanation!  

[Kelly1920]

I had my diagnosis- Coeliac. Thank you to everyone who responded to my questions. I was diagnosed over the phone on that day and it felt a relief rather than a panic that I thought it might be. I’m now trying to change my lifestyle in lots of ways and making lots of mistakes. I hadn’t realised how “Eeyore” I had become. Feeling fatigued and miserable because of the symptoms had become a way of life almost- and I am now hoping I will move past it. 
 

Any tips or tricks I should know or things to avoid? 

[trents]

Some tips, Kelly:

1. Familiarize yourself with food industry terminology that can disguise the presence of wheat, barley and rye. For instance, "malt flavoring," "malt extract," "bulgur," "durum" and other wheat varieties. Be suspicious of food label allergen tipoffs to the likely presence of gluten like, "may contain wheat," "processed on the same equipment as wheat, tree nuts and soy," and so on. Even spices can contain wheat if used as a texturing agent. Almost all canned soups contain wheat starch as a thickener. Most soy sauce contains wheat, believe it or not. Read the labels if you don't believe me. Read all labels for store bought prepared foods!

2. Keep in mind that the goal is to not only eliminate macro sources of gluten but micro sources from cross contamination when non gluten foods come in contact with gluten foods on cooking surfaces and utensils.

3. Check for gluten in supplements and meds you use. Wheat starch can be used as a filler in pills.

4. Avoid eating out as much as possible. When you must eat out and there is not a gluten-free menu, order things that are by nature not going to come in contact with gluten such as a baked potato or a hard boiled egg or fresh fruit. Ask that meat and veggies be cooked in their own clean cookware. When eating out you must be assertive.

5. Focus on eating simple, basic foods that you prepare at home where you have total control over cross contamination. Fresh meat, fresh fruit, fresh vegies. Avoid prepared food products as much as possible. We are discovering that even prepared foods labeled "Gluten Free" may not be. When buying prepared foods look for the label "Certified Gluten Free" as opposed to "Gluten Free." Certified Gluten Free products are generally subject to stricter standards. 

6. Be aware that your Celiac Disease may have caused the development of other food allergies/intolerances. This is very common because of "leaky gut syndrome." Celiac Disease tends to produce a dysfunctional immune system that mistakenly identifies safe foods as invaders.

 

It can be overwhelming at first. Big learning curve. Hope this helps.

[Scott Adams]

This list is good for the USA, and good for most things in the UK. I think the biggest differences would be "flavorings" and "natural flavorings" which may be different there, as well as just "starch." In the USA starch is always corn starch, but in the UK can be wheat I believe:

This article is helpful as well: