Why Do Some People Feel They *must* Have An Endoscopy?

[psawyer]

Damage to the villi can also be caused by:

Tropical sprue;

Giardiasis ("beaver fever");

exposure to high levels of radiation;

alcohol abuse.

However, the most common cause by far is celiac disease. The pathologist's examination of the biopsied tissue should identify the cause.

[sandsurfgirl]

My blood tests were off the chart positive. The docs said you definetly have it. We decided to do an endo & colonoscopy to check the extent of the damage and mostly to make sure there wasn't anything else to deal with.

Now that I understand. Seeing the extent of the damage makes sense. When doctors doubt the blood tests and tell people to keep eating gluten to get an abnormal endoscopy, that irks me.

[mommida]

That makes sense to me too. We have Celiacs here that also have Barrett's esophagus, Nutcracker syndrome, and other things to contend with.

You are also establishing a baseline to determine if the gluten free diet is healing the damage.

[Britgirl]

I have had the procedure more than once, and I strongly disagree with your label of "torture."

You fast for a number of hours, and are sedated during the actual procedure. It is painless. The preparation for a colonoscopy is much more involved, and rather unpleasant, but it isn't "torture" either.

And I disagree with you also. My mum has had them every year for the duration of her Celiac. In every case there has either been damage to her throat or the anesthesia didn't take. I know it's not the case for everyone, but still after seeing the result every year, I am glad I managed to avoid it.

[Monklady123]

Thanks for all your replies. A very interesting discussion.

I guess it makes sense to have the test if there is some concrete reason relating to work or insurance or something like that. (however, personally, if I had to do the gluten challenge I wouldn't be *able* to work).

Well, I had a "borderline" blood test, and that combined with my immediate reaction to going off gluten (and my immediate reaction when I accidentally eat gluten) caused my doctor to say "yep, celiac." I guess she has no actual "proof" but it doesn't bother either one of us. I just tell everyone that I have celiac, which avoids the problem that some of you mentioned of people not taking it seriously if it's "just" gluten intolerance.

I wouldn't be able to leave the house for the duration of the gluten challenge so I'll never be having it!

[mommida]

If the endoscopy involved a gluten challenge, I would not do it. Gluten challenges can lead to dehydration and hospitalization for some. Like you said, I would not make it out of the house during a gluten challenge.

[sandsurfgirl]

My GI doc was just telling me about a thing called "celiac crisis" where gluten induces your body to go wacky, your organs to shut down. He just had a patient in the hospital for an entire month due to celiac crisis. He was telling me to be so careful about gluten, especially since I have adrenal problems. He said be careful about sharing cups with my family even. I already knew that, but I thought it was great that he knew that. I would bet that lots of docs don't even know about celiac crisis and don't think twice about telling people to stay on gluten.

I say if you have to have it, get an endoscopy but go gluten free if you have positive blood tests or positive dietary response. The damage doesn't heal that fast, so if you get the scope quickly, you can still see damage.

[Lisa]

My GI doc was just telling me about a thing called "celiac crisis" where gluten induces your body to go wacky, your organs to shut down. He just had a patient in the hospital for an entire month due to celiac crisis.

With so few doctors concerned about Celiac Disease, I'm surprise there is a definition called a 'celiac crisis'. I'd like to hear more about it.

It was always my understanding that unaddressed Celiac Disease can lead to other issues, and some, if continued to be unaddressed , potentially life threatening issues. Dehydration can be life threatening.

I am certain that his patient has other issues going on. If not, he was REALLY off base with his diagnosis. (wonder if he checked on her hospital food )

[ElseB]

Blood tests do NOT have false positives.

Not so. From the Open Original Shared Link:

Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

[mushroom]

Not so. From the Open Original Shared Link:

Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

But it's interesting that many doctors only run the AGA and the tTG - non even total serum IgA

[concernedmamma]

I haven't read through all of the replies, but wanted to give you an alternate view.

Both my boys have Celiac. One DX through positive blood work and a scope (because that is what we were told to do and I just wanted my 'baby' to feel better, so that is what we did). He had had many health concerns prior, honestly we are only now starting to see improvement, over a year and a half later.

Son number two had positive blood work a year later. By this time I was more educated and opted out of the scope for him. He has very few/questionable symptoms, and so far, 4 months in we are seeing little change.

Now my blood work has come back positive. I have not had symptoms that I would make a clear connection to Celiac. I initially was not going to do the scope, and went gluten free for one week. it was then that I realized that to completely 'buy in' to the idea that I had to remain gluten-free life long (even if I don't see any positive changes) I would need to KNOW that eating Gluten was doing actual damage to my body. Also, there is a bit of a tax break here in Canada and I was told that the adult GI would not definitively diagnose me with out a scope. So now I am back on a Gluten filled diet and my scope is booked November 15th.

[pricklypear1971]

With so few doctors concerned about Celiac Disease, I'm surprise there is a definition called a 'celiac crisis'. I'd like to hear more about it.

It was always my understanding that unaddressed Celiac Disease can lead to other issues, and some, if continued to be unaddressed , potentially life threatening issues. Dehydration can be life threatening.

I am certain that his patient has other issues going on. If not, he was REALLY off base with his diagnosis. (wonder if he checked on her hospital food )

It's neither here nor there.... As one of those adrenally challenged patients (and it's a toss-up as to what caused the adrenal damage) it's irrelevant. When you arrive at a certain point you just end up at the hospital.

When gluten=freak out and you can't breathe or eat or drink you don't split hairs, you just stay the heck away from gluten if it's the trigger.

Jeez, I'll never forget (as much as my addled, hyped up brain will allow me to remember) being unable to handle the sensation of water on my skin + sound of water running - while munching on ak-muk whole wheat crackers since I was supposed to be eating "complex carbs" to stabilize my tanking blood sugar. Oh, yeah....and DH literally sprouting all over my body at the same time.

I still roll my eyes at that one. I really thought I had lost it, and I had.... Try explaining THAT one calmly over the phone.

Who needs psychodellic shrooms when you've got gluten (and steroids)?!?!

Who knows if gluten technically causes everything to stop working, the point is that it can trigger a full - body crises that needs emergency treatment (oh geez, just keep the steroids away, please!).

And now you know why I wear the MedicAlert bracelet.

Ugh, I'm having flashbacks!!!

Here's a reference for Celiac Crisis https://www.celiac.com/articles/22235/1/Celiac-Crisis-A-Rare-but-Serious-Complication-of-Celiac-Disease-in-Adults/Page1.html

It seems to be more "lack of nutrition" focused but I'm sure it's more complicated and varied (as are all Celiac things, evidently).

[Katrala]

While this doesn't apply to everyone, I feel that some people who call themselves celiac don't have an endoscopy after a negative blood test because they are scared it will also be negative.

An endoscopy was a million times easier for me than a colonoscopy. I had mine in the morning which meant I just went to bed and didn't eat any breakfast. The whole thing took an hour or less and I had no problems. I was shopping 2 hours later.

Given that intestinal damage is what celiac is (except for latent, obviously,) I don't see how you can self-diagnose 100%. People with a history of celiac in the family, etc. I can understand more, though.

Don't pick a random doctor. Ask around and get references and find a doctor that knows what they are doing.

And for whatever tax, insurance, college, etc. need you have in the future, you have a 100% medical diagnosis.

[DonnaMM]

Katrala,

I agree with what you are saying about people feel to be official they must have the egd. I was one of those people. I had problems for years and accepted the fact when my doctors said it was not a food intolerance its just stress just live with it and get on with your life (the dr said those exact words) but once the pain got too bad I insisted for more blood work and egd because I struggled giving up gluten ( even though it made me feel better). The blood and biopsy still came back negative but the egd showed damage. My dr still did not want to diagnose me but I have a good friend that is a GI and based on my family history And my own history said it is celiac no question. I am now starting to think an egd is not all that important because doctors don't seem to care. But I don't agree with how many people seem to diagnose themselves without having gone through any testing at all. Also I was terrified to have my egd because just like you said I was afraid it would come back negative. I was so worried I was goig to pay all this money and they still would not figure what was wrong. Even though my GI refused the diagnosis the damage that was done was enough for me based on my European background and other autoimmune problems

[Reba32]

I had the endoscopy (with incredibly painful gluten challenge for 8 weeks prior) so that my husband would quit bugging me, so that my employer would know I have a definitive diagnosis, and to see what the extent of the damage was. My husband (we're since divorced) wouldn't believe me that I had Celiac disease, despite how sick I got when I ate anything with gluten in it (I discovered it years after we were married), he didn't outright say it, but I know he thought it was all in my head. Yes, he was a bit of an ass about it. Even my doctors that I saw gave me the smile and nod to humour me

The GI doctor said I couldn't possibly have Celiac disease because I was fat and constipated, instead of skinny with diarrhea. (I still don't get why they won't even consider Celiac unless a person has diarrhea? Only about 35% of Celiacs have it, 35% have constipation, and the rest have no GI symptoms at all! grrrr). She was more surprised than I was when the blood tests came back 99.9% positive, and the endoscopy showed obvious intestinal damage. It was also discovered that I have a hiatal hernia, which I wouldn't have know had I not had the endoscopy.

Plus, now that I'm back in Canada, if I choose to keep accounting records, I can claim a tax break with my definitive diagnosis. I wouldn't be able to if I was self diagnosed and didn't have the paperwork to back it up. I just can't be bothered to keep records of my gluten free food purchases, and I don't buy many packaged foods anyway. I eat mostly foods that Nature made gluten free naturally.

[Katrala]

The blood and biopsy still came back negative but the egd showed damage.

If it showed damage, what was the doctor's rationale for not diagnosing?

I mean, I understand if there was no damage, but I thought damage was what they were looking for?

[mushroom]

I suppose if I had had to prove to someone important in my life that I had what I said I had, I might have gone ahead with trying to get a diagnosis, but since I did not have to, most of the things you folksare saying about why you did it are the reasons why I didn't. The pain of the challenge, just because some jerk(s) didn't think to test me before, because I was a 'head case'.... no way was I going to put myself through agony to prove to the medical professionals what I already knew, and give them another chance to screw up.and screw me over all over again.

[DonnaMM]

If it showed damage, what was the doctor's rationale for not diagnosing?

I mean, I understand if there was no damage, but I thought damage was what they were looking for?

Not quite sure why he was so against diagnosing me. He said he hates to put me on such a restrictive diet if the biopsy came back negative. I was just like ok great its negative but I am going to stay on the gluten free diet cause its the only thing that gets rid of the pain. I had also been gluten free for about four months, but he refused to take that into consideration for a negative biopsy. Whatever I, just like a lot of people here want to just give up on these doctors all together

[DonnaMM]

I suppose if I had had to prove to someone important in my life that I had what I said I had, I might have gone ahead with trying to get a diagnosis, but since I did not have to, most of the things you folksare saying about why you did it are the reasons why I didn't. The pain of the challenge, just because some jerk(s) didn't think to test me before, because I was a 'head case'.... no way was I going to put myself through agony to prove to the medical professionals what I already knew, and give them another chance to screw up.and screw me over all over again.

Mushroom,

I am sorry that you have such a terrible experience with doctors. I work with them all day long and always gave them the benefit of the doubt, but I am beginning to see their true colors. I am in grad school now to become an NP and I really need to learn from mine and everyone elses on here experiences with doctors and be sure I never become that way. I unfortunately had to prove something to my oncologist. She thought I was making everything up about stomach, and it still came back negative but I really dont care what she thinks anymore

[mushroom]

Mushroom,

I am sorry that you have such a terrible experience with doctors. I work with them all day long and always gave them the benefit of the doubt, but I am beginning to see their true colors. I am in grad school now to become an NP and I really need to learn from mine and everyone elses on here experiences with doctors and be sure I never become that way. I unfortunately had to prove something to my oncologist. She thought I was making everything up about stomach, and it still came back negative but I really dont care what she thinks anymore

I worked with doctors for only one year - quite long enough, I might add - then switched to lawyers Most of my work with lawyers involved personal injury or (mainly) medical malpractice litigation, so you can see how my glasses might be tinted with anything but rose But it is the personal experiences that have cleared my lenses. I know some good ones, one or two great ones, and several who might have killed me if I let them For the most part I have self-diagnosed my ailments, and my current GP(to whom I usually present a diagnosis ) will cheerfully admit what she does not know and say, "Let's look that up and let me talk to some people to find out where you should go and what we should do." She knows better than to offer me some pills and pat me on the shoulder

I think the US doctors are the worst at pill-pushing; the things they tried to make me take in the three months I was there over the summer were unbelievable. But at least I was able to figure out from the whole experience what I should be doing, so I suppose it helped.

Good luck on your NP course. If you keep an open eye and an open mind when viewing what goes on around you, I am sure you will become a good one. Especiallly if you remember that the patient probably knows more about what's going on in her body than you do - listen to her, is my advice. Sometimes it seems like doctors do not have ears

[love2travel]

I had both the colonoscopy and gastroscopy done and am glad I did. My doctor told me I had celiac due to my positive bloodwork but at that time I had no idea that was all I needed. I wanted scopes done to prove I did it either way because I was asymptomatic and just could not wrap my mind around not eating gluten-containing foods (I teach culinary classes and food is my passion). So, when I was told the biopsies were positive that did it for me. Who knows? I may have cheated without being officially diagnosed because I wasn't getting sick from eating gluten so I really needed that proof. In retrospect I *was* having gluten-related problems such as miscarriages but I had no clue of the correlations at the time.

[tennisman]

I didn't have a choice my doctor said I had to have an Endoscopy .

[Di2011]

love2travel,

I think you will be the best - best gluten free cook/chef we've ever had on board our crazy cruise ship / tv chef program or something. We NEED you! All the different cuisines you can help us with (gluten-free), substitute (gluten-free) ingredients for our favourite dishes. I reckon that you will be my "Jamie Oliver".

[Monklady123]

I didn't have a choice my doctor said I had to have an Endoscopy .

We always have a choice. It's your body. Even with a broken bone you have a choice. Wouldn't recommend choosing not to set a broken bone though. But we always have choices in medical care.

[tennisman]

We always have a choice. It's your body. Even with a broken bone you have a choice. Wouldn't recommend choosing not to set a broken bone though. But we always have choices in medical care.

I was 15 at the time so I had to do what the doctor said lol . Plus I think in the uk you need to get a biopsy to confirm you have celiac disease so you can get gluten free food on prescription . I don't really wanna do most the tests my doctors have told me to do but I need to get better so don't really have much choice