Scared To Death Of My Biopsy

[tom]

.. . . a pre-cancerous condition called "Barrett's Esophagus"

Ehhhhhhhhhhhh

Barrett's isn't generally called pre-cancerous.

The phrase "carries increased risk" is used, but having a car carries increased risk of decapitation in a highway accident.

Doesn't make car ownership "pre-decapitative".

[Fiddle-Faddle]

Ehhhhhhhhhhhh

Barrett's isn't generally called pre-cancerous.

The phrase "carries increased risk" is used, but having a car carries increased risk of decapitation in a highway accident.

Doesn't make car ownership "pre-decapitative".

Oops, you're right--it's not a precancerous condition in and of itself.

"WHY IS IT IMPORTANT TO KNOW IF I HAVE BARRETT'S ESOPHAGUS?

The main reason that it's useful to know whether you have Barrett's esophagus is that this is a premalignant condition, meaning that patients with Barrett's esophagus have a higher-than-average risk of getting cancer. Cancers can arise from regions of Barrett's mucosa containing intestinal metaplasia. The abnormal mucosa degenerates into a premalignant phase known as dysplasia. In some patients this dysplastic mucosa will further degenerate in a step-wise process from low-grade dysplasia into high-grade dysplasia and then cancer, often during an interval of several years. If you have Barrett's esophagus it's important that you consult with your physician about endoscopy to evaluate for the risk or existence of cancer. Patients with Barrett's esophagus should have endoscopy performed every 1 to 3 years, a practice known as surveillance endoscopy.

WHAT IS THE RISK OF CANCER IN BARRETT'S ESOPHAGUS?

The exact risk of a patient with Barrett's esophagus developing cancer is not known. Current estimates put the risk at 40 times higher than in the normal. Although the risk of cancer is increased, the actual chance of getting a cancer is quite small. Out of a population of 1 to 2 million people with Barrett's esophagus, annually between 10,000 and 15,000 people in the U.S. get the type of cancer associated with Barrett's esophagus."

from Open Original Shared Link

[happygirl]

GFinBC - I have had a few endoscopies, using different sedation or anesthesia, and they all went well. I'm sure that you will do fine!

[Tallforagirl]

Tallforagirl, I never said that making antibodies to gluten means that you have celiac disease. Please read what you yourself quoted me as saying! I said that it means that you have a problem with gluten.

Doesn't neccessarily mean that either.

[Fiddle-Faddle]

Doesn't neccessarily mean that either.

Umm, yes, it does.

From PubMed:

Gliadin antibodies identify gluten-sensitive oral ulceration in the absence of villous atrophy.

O'Farrelly C, O'Mahony C, Graeme-Cook F, Feighery C, McCartan BE, Weir DG.

Department of Clinical Medicine, Trinity College, Dublin, Ireland.

This study demonstrates gluten-sensitive recurrent oral ulceration (ROU) in the absence of gastrointestinal abnormalities which is associated with a humoral response to wheat protein. Ten patients with severe ROU were investigated; all had normal small intestinal biopsies. Four patients had raised levels of antibodies to alpha gliadin, a wheat protein fraction; in three of these four, the ulceration remitted on treatment with a gluten-free diet (G.F.D.) and relapsed on gluten challenge. None of the remaining six patients had raised alpha gliadin antibody (AGA) levels and none responded to G.F.D. Thus raised AGA levels can be used to identify patients with ROU who are likely to respond to a GFD.

Also from PubMed:

Antibodies to gluten, demonstrated with the immunofluorescence technique, were found in all coeliac children on a normal diet that were studied, and in half of the adults with the untreated disease. In children and adults on a gluten-free diet these frequencies decreased to 87 and 32%. In Crohn's disease, cystic fibrosis, recurrent diarrhoea, dermatitis herpetiformis and ulcerative colitis, the frequencies were 52, 42, 37, 18 and 18%, respectively (and in 4% of controls).

It was therefore concluded that antibodies to gluten were sensitive markers for gastrointestinal diseases, but were not specific for gluten enteropathy. Antibodies to reticulin, on the other hand, were less sensitive but of far greater specificity for coeliac disease. Gluten antibodies were of the IgA, IgM and IgG classes, whereas antibodies to reticulin were only of the IgA and IgG classes. Both types of antibody were found to be non-complement-fixing. Autoantibodies to smooth muscle were found in 5% of the coeliac patients (and in 0% of controls). No relationship with hepatic complications was found. In the patients with dermatitis herpetiformis, autoantibodies to gastric parietal cells were found in 24% (and in 5% of controls). No relationship was established between the occurrence of HLA-B8 and the presence or absence of any of the antibodies studied.

--Antibodies to gluten and reticulin in gastrointestinal diseases

K. P. Eterman and T. E. W. Feltkamp

from mvdu:

Subject: Anti-Gluten Antibodies Are Common in Sporadic Ataxia (WCN 2001)

Date: 6/27/2001

E-MOVE reports from the 17th World Congress of Neurology, London, June 17-22. Poster and Platform session numbers refer to those in the abstract book, published in Journal of the Neurological Sciences 2001;187 (supplement 1).

Causes of cerebellar degeneration: Gluten ataxia in perspective

M Hadjivassiliou, RA Grunewald, GAB Davies-Jones

P1527

Antibodies against gluten are common in sporadic, but not familial, ataxia, according to this study.

Two-hundred-one patients with ataxia underwent genetic and antibody testing. Of the 58 with familial ataxia, 34 had autosomal dominant inheritance, with 7 of these identified as SCA-2, -6, or -7, and 27 with no identifiable gene mutation. Twenty-four had autosomal recessive inheritance, with 12 identified as Friedreich's ataxia and 12 with no identifiable gene mutation. Within this group of 58, the anti-gliadin antibody prevalence was 12%, equal to that found in healthy controls. Of the 143 patients with idiopathic sporadic ataxia, 28 had probably MSA, and 14% of these were anti-gliadin-positive. Of the final 115 patients with non-familial, non-MSA ataxia, anti-gliadin antibodies were found in 41%.

I could not find ANY study indicating that healthy people produce antibodies to gluten. But there are many studies indicating that unhealthy people do--and that the gluten is what triggers the poor health.

[Mtndog]

Thank you to everyone who responded!!!

I've been reading along but haven't had time to respond as I have a 5 and 2 year old running around here. Now that I understand the purpose of the medication (I have confirmed with my GI's office that they are using Versed) and that it isn't actually an analgesic I feel a bit more comfortable with the whole situation.

Fiddle-Faddle: Thank you for pointing out the possible risks in having this procedure done. I too feel that we should listen to our intuition about things. I n this case my intuition says "go ahead". I just needed some clarification about the action of the anesthesia.

Thanks again,

Marianne

Marianne- If your gut says yes, then do it. I did it (even though I had been gluten-free for over two months) and I have no regrets. I do not generally have good experiences with anethesia (local or general) but the last two procedures I've had- the dualoscopies as I call them- have both been with versed and it was great!

There are risks inherent in any procedure (and life in general!) but I wish you luck. Keep us posted.

[Tallforagirl]

raised AGA levels can be used to identify patients with ROU who are likely to respond to a GFD.

That's interesting, but doesn't in my opinion negate the need for endoscopy/biopsy where celiac disease is suspected.

Antibodies to gluten, demonstrated with the immunofluorescence technique, were found in all coeliac children on a normal diet that were studied, and in half of the adults with the untreated disease. In children and adults on a gluten-free diet these frequencies decreased to 87 and 32%. In Crohn's disease, cystic fibrosis, recurrent diarrhoea, dermatitis herpetiformis and ulcerative colitis, the frequencies were 52, 42, 37, 18 and 18%, respectively (and in 4% of controls).

If I am reading this right, it is saying that antibodies appeared in 32 per cent of celiac adults on a gluten-free diet (not to mention 87 per cent of gluten-free celiac children). If this true, then it doesn't seem like the presence of the antibodies is very reliable in demonstrating an adverse reaction to gluten, because if there is no gluten being ingested, shouldn't there be no reaction, and therefore very few or zero antibodies? Otherwise, what's the point of treating celiac disease with the gluten-free diet?

I could not find ANY study indicating that healthy people produce antibodies to gluten. But there are many studies indicating that unhealthy people do--and that the gluten is what triggers the poor health.

Again, sounds like a good reason for further investigation for those patients with the antibodies, so yu can determine exactly what the health issue is. Would you want to go on a gluten-free diet, feel better for a bit, then discover you have an additional health problem and have delayed treatment?

[Mike M]

Thanks for your responses. I think that asking for a tranquillizer would probably be a good idea. Although I'm 31 I feel like a scared 5 year old when I think about this procedure. I'm off to look Versed up. I always feel way more relaxed about things when I am well educated about them.

Do you know of anyone on this board who has done it drug free? I'd really like to hear from them if they're out there.

Well, I asked the GI doc for none and he thought about it for a minute and said he would do a half dose. I remember all of it and watched it on the monitor and even asked him questions during the procedure once pulling out the bite plate/guide (he did not like that). I did take the anti gagging spray. Bottom line, all but painless. I have another one due in a couple of months this time for my EE check up. I will try to get him to go with none! I just do not like being put to sleep. All the best, Mike

[Fiddle-Faddle]

Again, sounds like a good reason for further investigation for those patients with the antibodies, so yu can determine exactly what the health issue is. Would you want to go on a gluten-free diet, feel better for a bit, then discover you have an additional health problem and have delayed treatment?

From PubMed:

Medical Clinic A, Department of Gastroenterology, Endocrinology and Nutritrion, University Hospital Ernst Moritz Arndt Universit

[Lisa]

Most people who visit this forum have been ill with various digestive issues for many years.

To me it's common sense to be tested with a colonoscopy and endoscopy exam to rule out more serious concerns, if not for a baseline test for the future.

To have an endoscopy/biopsy post positive serologic testing is a personal choice, and in my opinion, a wise one. But not necessarily as a confirmation for Celiac Disease, where a positive diagnosis was made with the blood work.

[WW340]

Most people who visit this forum have been ill with various digestive issues for many years.

To me it's common sense to be tested with a colonoscopy and endoscopy exam to rule out more serious concerns, if not for a baseline test for the future.

To have an endoscopy/biopsy post positive serologic testing is a personal choice, and in my opinion, a wise one. But not necessarily as a confirmation for Celiac Disease, where a positive diagnosis was made with the blood work.

I totally agree with this. My GI said he could diagnose me with celiac disease just based on my sky high blood numbers, but he wanted to make sure nothing more was going on since I had had the disease for so long. He even had me start the diet immediately, as the diagnosis was already made. I had a colonoscopy as well as the endoscopy 3 weeks later.

It was a relief for me to know I did not have any cancer already brewing in there. My mother died of intestinal lymphoma when she was only 2 years older than I was at time of diagnosis. Her symptoms were no worse than mine were.

[Mom2Twins]

Hi there. I haven't been on the boards for a while, but I am one of those who recently had the biopsy with NO meds. As someone said earlier in this thread, it was unpleasant but not painful.

By the way, I'm Canadian too. Congrats on getting the biopsy within 5 weeks! Mine took 5 months.

Anyway, the reason I went with no meds was

1) my twins were only 13 months old and I wanted to look after them afterwards

2) my stomach was horribly upset that day (30+ trips to the bathroom) and I was more than a little concerned about being sedated, sorry if TMI.

I highly recommend the sedation. I think there was a really good reason that everyone else in the clinic was knocked out! They spray your throat with local anasthetic, put in the mouthguard, and then the endoscope goes down. I kind of giggle when people say how easy it was when they were sedated... without the drugs I did vomit quite a bit. Again, nothing was painful, just really unpleasant, and it was over pretty quickly. Yes, my throat was sore for a day, but I did a fair bit of vomiting.

FYI, it's quite a safe procedure. Don't worry. It's good to get everything checked out, even with a positive bloodwork (my bloodwork was very positive). In my case, they suggested that lymphocytic colitis was likely along with the celiac. Since 67% of people with refractory celiac also have LC, it keeps me on the straight and narrow.

Feel free to PM me, and don't be scared, you'll be fine. If I can survive it med free, you will be totally fine with the nice drugs they give you. If I had to do it again I'd take the drugs!

Sue

[Tallforagirl]

Most people who visit this forum have been ill with various digestive issues for many years.

To me it's common sense to be tested with a colonoscopy and endoscopy exam to rule out more serious concerns, if not for a baseline test for the future.

To have an endoscopy/biopsy post positive serologic testing is a personal choice, and in my opinion, a wise one. But not necessarily as a confirmation for Celiac Disease, where a positive diagnosis was made with the blood work.

Thankyou, could not agree more.

Some on this board seem to imply that accepting an endoscopy will rob them of their choice to try a gluten-free diet and see if it helps their symptoms. Of course this is not so.

Another good reason to get diagnosed by both blood and biopsy would be in convincing family that, yes, you do have this disease, and that it would therefore be a good idea for them to also get tested.

[Fiddle-Faddle]

Some on this board seem to imply that accepting an endoscopy will rob them of their choice to try a gluten-free diet and see if it helps their symptoms. Of course this is not so.

I have not seen anyone implying this. If anything, it works the other way--starting a gluten-free diet and seeing if it not only helps but completely resolves symptoms does not rob one of one's choice to try a biopsy/endoscopy. And, as WW340 illustrated, obviously an endoscopy is a given with long-term symptoms and family Hx of intestinal lymphoma. As I've continually repeated, if there is a good reason for an endoscopy, of course one should proceed with it. But confirming celiac is no longer a stand-alone good reason for a biopsy, as the blood work has a lower false negative rate than the biopsy.

Another good reason to get diagnosed by both blood and biopsy would be in convincing family that, yes, you do have this disease, and that it would therefore be a good idea for them to also get tested.

If you have family who won't believe that you (and, potentially, they) have celiac unless you have an invasive procedure done, then you (and they) have way bigger problems than just celiac.

[Gemini]

If you have family who won't believe that you (and, potentially, they) have celiac unless you have an invasive procedure done, then you (and they) have way bigger problems than just celiac.

How true these words are, Fiddle-Faddle! My whole family, except for my sister, just will not believe that they could have celiac disease also. IF I had needed an endo and had one done, they STILL would not believe me.

I could have worn a biopsy result pasted to my forehead for all to see and they still would turn their backs on me. 50% of all my family members having flaming symptoms and other autoimmune problems related to celiac disease yet they in no way are going to change their diets or even get tested. I have a double DQ-2 gene, which you know means celiac disease is on BOTH sides of my family, and my mother hung up the phone on me when she decided she had heard enough.....the denial kicked in and she got mad. Having a biopsy means squat, except to those who want to have one done or need to see damage to stick to the diet.

It's probably a good thing they do go off and have all of their "other" screening tests done, so often pushed by doctors. If I had their symptoms for as long as they have had, I'd be worried about cancer also.

[ravenwoodglass]

Another good reason to get diagnosed by both blood and biopsy would be in convincing family that, yes, you do have this disease, and that it would therefore be a good idea for them to also get tested.

For my family it was not my diagnosis but my recovery that encouraged them to get tested. Even after my diagnosis by my allegist and then having it confirmed by my GI only my DD took it seriously. Even then it wasn't until after I could walk almost normally and my DD was no longer being woken up by my violent every night bathroom excursions and my oozing sores healed that they all decided it would be prudent to listen and test themselves.

[CDFAMILY]

Do you know of anyone on this board who has done it drug free? I'd really like to hear from them if they're out there.

Hi, I have had an endascope twice drug free and once drugged. The first time was before Celiac and I had an ulcerated esophogus...that was a breeze and I watched the whole time.

The second time was for my official diagnose and I was drugged. No real problems afterwards.

The third time was because my Celiac numbers were still high on a strict gluten-free diet. My husband suddenly had to go out of town so I decided to do no drugs so I could drive home. It is doable but a lot of gagging. I think the tube was bigger than when I had the first scope. It really wasn't painful just really annoying because the gagging was similar to maybe a dry heave...very deep.

If I had to do a scope again would I do drug free....I am not sure...on one hand it was nice to talk to the doctor afterwards and walk out of the hospital feeling good....on the other hand, I remember the auto gag reflex and it was powerful. I think from now on I will just demand a scope in a pill.