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

[Monklady123]

After reading more than one thread where people are talking about blood tests vs. endoscopy I'm curious....why do some people think they have to get a "definitive diagnosis" or "proof of celiac" or whatever. I mean, if you go gluten free and you feel significantly better then what difference does it make it you have celiac or not? Why do you have to "prove" it?

Personally, I know that if I eat gluten I feel awful. If I don't then I feel great. So whether I'm celiac or "only" gluten intolerant amounts to the same thing. A gluten free diet.

I know someone who went gluten free on my suggestion and felt better almost immediately. She stayed gluten free for awhile but then she asked the doctor to do an endoscopy "to prove to my family that I have celiac." So she went back on gluten as required by the doctor and felt bad almost immediately. She had the biopsy which came back negative. So now she's back to eating gluten! And searching for some other cause to her symptoms (which came back when she went back to eating gluten). (the doc says "IBS") This seems really stupid to me, to be honest.

Anyway, just wondering what people's reasons are for wanting a "definitive" diagnosis.

[sariesue]

For some they need to know that eating gluten is actually damaging their body in order for them to be strictly compliant with a gluten free diet.

If you are still in school there is a need for a dx to receive accommodations especially in college. Colleges do not have to provide gluten free foods or special housing without a dr's dx and note.

For some it is so they can help their family. Celiac is genetic so knowing means they can help their family not suffer.

My reason was kinda selfish, I wanted a definitive dx to prove that I actually had a problem with gluten. I keep getting told that gluten couldn't be causing my symptoms from my family and my dr he was fine with calling it IBS. Of course my biopsy and blood tests were negative as were most of my allergy tests. So on paper I have a wheat intolerance and a barley allergy. But I avoid all gluten because I don't like rye.

[mushroom]

Some people need a medical professional to tell lthem to do something; others trust their body to tell them if they are doing something wrong or right. Now admittedly, the medical perspective is "you may be wrong, that may not be what your problem is. There could be something much worse wrong with you!". Well, to that I say, if it cures your problem that is probably what it is. If it doesn't, than maybe it isn't, or maybe it is a co-intolerance, or maybe you really do have something worse, in which case let them find what it is .

The problem with going back on gluten for testing is that there is no general agreement on how long you need to be consuming it for testing to be valid. Estimates range all the way from one week to three months, and these are really just 'guestimates'. The only accurate time period is if there has been no intervening gluten free period. Even then, there are false negatives (estimated at 20-30%) and people who or not celiac (defined as GI issues with specific antibodies) but gluten intolerant in some other way (like brain lesions and neuro symptoms.) And then there are the people who test positive to anti-gliadin antibodies in the blood but in whom no GI damage is found. Is that the fault of the gastroenterologist who did not take enough samples in the right places? Or do they really have no GI damage.

For me personally, I was never tested for anything. I stopped eating gluten to try to cure my psoriatic arthritis; it was a total bonus that it cleared my GI symptoms as well (after I discovered my co-intolerances).

[jswog]

Well, to that I say, if it cures your problem that is probably what it is. If it doesn't, than maybe it isn't, or maybe it is a co-intolerance, or maybe you really do have something worse, in which case let them find what it is .

If it waddles like a duck and quacks like a duck, it must be...a horse! Sometimes it feels like that's the logic the medical profession uses!

Jen

[beebs]

For me it is this the difference between intolerance and celiac is damage. When I get glutened am I getting damaged each time? Also - some people don't want to be restricted by a diet that can be quite difficult to follow when you are travelling etc. So - what if I am going through all of this and it isn;t even that! What if it something different? I also have 2 possibly 3 other autoimmune diseases - what came first? Do I have all these stupid things wrong because I was an undiagnosed celiac for so long? Or is it just a coincidence ? Also - I have two kids with chronic gut issues - I am pretty sure we are all connected illness wise- but right now they don't know if its celiac or crohn's that hasn't shown itself or something else. One had a borderline biopsy - the other neg but the only took 3 samples and he has leaky gut, severe GERD and severe chronic gastritis and before he went gluten-free malabsorption. But we still don't really know what is the cause, do you see what I mean? It is very frustrating.

[mushroom]

Well, yes, I do. Celiac is one of the most frustrating diseases, whether or not you are diagnosed. I will never ever be tested so just assume I am celiac with alll that goes with it. It works for me I have two other autoimmune diseases, have discovered other food intolerances presumably because of leaky gut since some of them manifested after I stopped eating gluten, and I can tell immediately every time I have been glutened.

If you have little ones it is a bigger problem trying to figure out if they have it too - you can try the genetic testing to see what genes you all carry and their likelihood of having it but it sounds like maybe they do. Gluten free is not going to hurt them now and they can decide later for themselves. If one has Crohn's he is better off gluten free anyway, and if the other has improved gluten free then I would just be happy that he is not sick all the time any more

[sandsurfgirl]

The medical establishment has brainwashed everyone to think they must have an endoscopy. They say it's the gold standard yet the only gold I see out of it is the gold lining the doctor's pockets.

I think they should only do an endoscopy if your blood tests are negative and they think you might have celiac. But if you get positive blood tests like I did the docs insist you must stay on gluten and have the stupid biopsy... a month or two later when they get around to it. I refused and went gluten free. Blood tests do NOT have false positives. If you get a tiny bit positive you have celiac but they have tons of false negatives.

Doctors are trained to treat things with drugs. Period. If there isn't a drug the disease doesn't exist to many of them. We have been bamboozled into having the same thinking, so people have a hard time accepting something to do with diet. Yet it's our diets that are killing us. Not just celiacs on gluten, but everyone eating as much chemicals and poison and filth as they can because it has a smiling cartoon character on it. Then everyone weighs too much and has cancer and instead of eating real food like fruits and vegetables, they want to keep drinking 2 liters of soda per day and have the drugs kill off the cancer all those chemicals created.

I wish more people would quit telling their darn families every detail about their medical diagnosis!!!!!! If you say you have cancer NOBODY questions you. Nobody says how was it diagnosed. Was it by blood tests or biopsies? But with celiac people have the nerve to ask how you found out. LIE to them! Tell them it was blood tests and then move on if you are self diagnosed. They dont' need to know and it's none of their business.

I have a huge bitterness and anger toward doctors who torture patients with endoscopy to "double check" the diagnosis when they know damn well that blood tests are adequate. It's unethical and it's against the hypocratic oath. They promise to do no harm, yet so many on this board were harmed by staying on gluten when they were already so sick.

You got me ranting now. This is a big hot button issue with me.

[beebs]

If you have little ones it is a bigger problem trying to figure out if they have it too - you can try the genetic testing to see what genes you all carry and their likelihood of having it but it sounds like maybe they do. Gluten free is not going to hurt them now and they can decide later for themselves. If one has Crohn's he is better off gluten free anyway, and if the other has improved gluten free then I would just be happy that he is not sick all the time any more

There is an improvement in their health - but neither are totally well - not by a long shot, they still have growth issues, malaborption/failure to thrive, foul and undigested stools and gastritis. So even though I know gluten causes problems - I just don't know to what extent. So annoying!

[navigator]

When I got blood test for coeliac, I had been wheat free for a year. Although my blood test was positive, it was below the level which would enable G.P. to official diagnosis without endescope. I live in Scotland, where there is no charge for prescribed medication, which includes basis foodstuff once officially diagnosed with coeliac. My G.P. believes that this is why there is a hardline on official diagnosis. I declined the endescope and my G.P. supported me in this, staing that he considered me to be coeliac due to symptons and family link. As such he would test annually for thyroid, foliates, vits a, b, d and diabetes(these tests, as the endescope, are all free in the UK).

However, 2 months later,due to employment issues due to not having official diagnosis , my G.P. convinced me that it would be beneficial to get endescope to protect myself. Also, although he arranged a dexa scan whilst I was waiting blood test results, he would be unable to do this regularly without official diagnosis.

Yes, the 7 weeks back on gluten were difficult and I would not have been able to do it when I was still working. Now, I'm gluten free for the rest of my life,regardless of diagnosis With the official diagnosis, I get offerred annual endescopes to check on healing and even if I decide to do this, they don't require a return to gluten. The official diagnosis also triggers other things such as free flu jab every year.

Would I have had the endescope if my career was safe? Absolutely not, but I consider that I've done the right thing.

My 22 year old duaghter was diagnosed 2 years ago. Following my G.P.'s advice, my 25 year old daughter was tested. As she had never gone gluten free,she had a high positive blood test and due to family connection did not have to get endescopy for official diagnosis.

I think there's a variety of reasons why people chose to have endescopy and wither thay do or not is their decision.

[kareng]

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.

[srall]

The medical establishment has brainwashed everyone to think they must have an endoscopy. They say it's the gold standard yet the only gold I see out of it is the gold lining the doctor's pockets.

I think they should only do an endoscopy if your blood tests are negative and they think you might have celiac. But if you get positive blood tests like I did the docs insist you must stay on gluten and have the stupid biopsy... a month or two later when they get around to it. I refused and went gluten free. Blood tests do NOT have false positives. If you get a tiny bit positive you have celiac but they have tons of false negatives.

Doctors are trained to treat things with drugs. Period. If there isn't a drug the disease doesn't exist to many of them. We have been bamboozled into having the same thinking, so people have a hard time accepting something to do with diet. Yet it's our diets that are killing us. Not just celiacs on gluten, but everyone eating as much chemicals and poison and filth as they can because it has a smiling cartoon character on it. Then everyone weighs too much and has cancer and instead of eating real food like fruits and vegetables, they want to keep drinking 2 liters of soda per day and have the drugs kill off the cancer all those chemicals created.

I wish more people would quit telling their darn families every detail about their medical diagnosis!!!!!! If you say you have cancer NOBODY questions you. Nobody says how was it diagnosed. Was it by blood tests or biopsies? But with celiac people have the nerve to ask how you found out. LIE to them! Tell them it was blood tests and then move on if you are self diagnosed. They dont' need to know and it's none of their business.

I have a huge bitterness and anger toward doctors who torture patients with endoscopy to "double check" the diagnosis when they know damn well that blood tests are adequate. It's unethical and it's against the hypocratic oath. They promise to do no harm, yet so many on this board were harmed by staying on gluten when they were already so sick.

You got me ranting now. This is a big hot button issue with me.

I am a big fan of your feistiness! I completely agree about the Great American Diet. When I went off gluten (dairy, corn) I started doing all the research I could because I was realizing very quickly that I was on my own. That's how I found this board which has been more helpful than anything else. And I feel like I walk a fine line between wanting to be almost evangelical talking about how this diet saved my life (and my daughter's) and never bringing it up because people are so frickin' clueless when it comes to food, diet and listening to their own bodies.

I have a friend who is 10 years younger than me and is having carbon copy symptoms as I did in my 30's when I was her age. That would gut issues, migraines, chronically sick, exhausted. Finally last night she said she wanted to talk to me about going gluten free for 2 weeks. I told her she should also drop dairy for 2 weeks and she thought that sounded impossible. Anyway...for the past few months I've been trying to talk to her about trying the diet, but it just sounds too hard and too expensive and completely overwhelming to her. Yet...she'll take drugs to manage the symptoms. It makes me crazy.

And don't get me started on school lunches...

Anyhow, I went gluten free as part of a cleanse and that's when I started realizing I had a problem. After an accidental glutening I realized I would not survive the challenge. 2 doctors were pretty insistent about the challenge but I just could not do it. Plus I knew what the problem was...nothing was going to change after the endoscopy.

My mother (age 68) was told by her GI to do the challenge. She was bed ridden after a day and nearly in the hospital. She called the doc's office and the nurse she talked to was insistent that she needed to stay on the diet because they needed a definitive answer. Later that day the doctor called my mom and my mom told him she just was miserable and didn't think she could make the challenge (keep in mind this is 24 hours later) and bless his heart he told her she needed to stop because it was doing too much harm. I can't imagine what would have happened if she continued.

My daughter's blood test was negative, and I chose not to do the endoscopy. Hopefully this doesn't cause problems in college. I'm at the point where if I have to set her up in an apartment and support her by buying all the gluten free foods, then I'll just do that. I can't risk her getting glutened when she's in school. And she's only 8 now so I hope it's better in 10 years.

[domesticactivist]

We didn't do it, but I confess to wishing we'd at least done all the blood testing before going gluten-free. I've been considered a hypochondriac most of my life (all those days I was sick with no fever) and looking back I had even attributed that to bullying and nerves so still I don't know whether it was psychological or physical.

Even with my son, when I see him doing so well for so long I start to think I imagined it all. I'd like to have a piece of paper with proof, just so that I can look to it when I start to think I'm crazy.

Of course if we'd gotten negatives we'd still be better off on the diet, but in that case I would consider not being fanatic about cc at all times, forever. That would be nice.

[kwylee]

Anyway, just wondering what people's reasons are for wanting a "definitive" diagnosis.

You've asked some great questions that I think speak to the crux of a major problem. My definitive "diagnosis" is negative for Celiac. What I have is Gluten Intolerance, it's serious, and I have responded perfectly to the strict avoidance of gluten, dairy and soy. My mother had the same neuro (only) symptoms I had for as long as I could remember. She died six years ago of a mysterious benign brain tumor. I was exhibiting the same symptoms as she. Had I not given up gluten in a STRICT manner, I know my fate would have been the same. This was a no brainer for me.

The problem is getting the medical establishment (and even many whose systems reject gluten but still have a negative diagnosis) to realize, and protect against, the true scope of Gluten Intolerance - beyond the textbook label of Celiac disease. An ignorance-driven gluten-filled endoscopy ordered by a doctor is tantamount to sunning a bug beneath the magnifying glass. (First...do no harm????)

One of my doctors told me something curious a few months ago - he was rambling on and said that Gluten Intolerance is a symptom of Celiac. I told him I disagreed, that I thought it was the other way around; that a diagnosis of Gluten Intolerance should be the new paradigm encompassing a broader array of serious medical conditions, Celiac included. I invited him to do the same research I had been doing the past year but of course he was not interested. (I didn't tell him that I also believed that MOST human bodies react negatively to gluten in some way, but it would have fallen onto deaf ears, so I didn't bother). But here's my personal takeaway. Unless we continue to bring the serious nature of Gluten Intolerance to the forefront (with or without a "medical" diagnosis of Celiac disease), we're not moving forward.

[domesticactivist]

Yes! Incidentally, I'm reading the book Healthier Without Wheat by dr Stephen Wagner and he hammers on the point of celiac being just one symptom of gluten intolerance, which can be just as serious in other ways.

[srall]

Yes! Incidentally, I'm reading the book Healthier Without Wheat by dr Stephen Wagner and he hammers on the point of celiac being just one symptom of gluten intolerance, which can be just as serious in other ways.

I'm responding to this quote because it's shorter than kwylee's but I completely agree. There is gluten intolerance....which may cause celiac, OR arthritis, OR neuro problems, OR IBS, etc... (In my opinion I should add...)

[lovegrov]

In my case my symptoms indicated the possibility of additional problems, so while the doctor did a biopsy to confirm what the blood test already told us, he was also checking for other things.

richard

[Celtic Queen]

One of my doctors told me something curious a few months ago - he was rambling on and said that Gluten Intolerance is a symptom of Celiac. I told him I disagreed, that I thought it was the other way around; that a diagnosis of Gluten Intolerance should be the new paradigm encompassing a broader array of serious medical conditions,

I so totally agree with this statement. I really think Celiac is just a small segment of Gluten Intolerance. And until doctors recognize that there are a broad spectrum of symptoms related to gluten intolerance, it will continue to be severly under diagnosed.

I tell people I have Celiac disease, but if I were more accurate, I would say that I really have a gluten intolerance since most of my issues are neuro and not gastro. But it's so complicated to explain that to people and they really don't take "Gluten Intolerance" seriously, so I stick with Celiac Disease because it sounds like something they can understand better and they take more more seriously.

[DonnaMM]

If it waddles like a duck and quacks like a duck, it must be...a horse! Sometimes it feels like that's the logic the medical profession uses!

Jen

I love this

[DonnaMM]

The medical establishment has brainwashed everyone to think they must have an endoscopy. They say it's the gold standard yet the only gold I see out of it is the gold lining the doctor's pockets.

I think they should only do an endoscopy if your blood tests are negative and they think you might have celiac. But if you get positive blood tests like I did the docs insist you must stay on gluten and have the stupid biopsy... a month or two later when they get around to it. I refused and went gluten free. Blood tests do NOT have false positives. If you get a tiny bit positive you have celiac but they have tons of false negatives.

Doctors are trained to treat things with drugs. Period. If there isn't a drug the disease doesn't exist to many of them. We have been bamboozled into having the same thinking, so people have a hard time accepting something to do with diet. Yet it's our diets that are killing us. Not just celiacs on gluten, but everyone eating as much chemicals and poison and filth as they can because it has a smiling cartoon character on it. Then everyone weighs too much and has cancer and instead of eating real food like fruits and vegetables, they want to keep drinking 2 liters of soda per day and have the drugs kill off the cancer all those chemicals created.

I wish more people would quit telling their darn families every detail about their medical diagnosis!!!!!! If you say you have cancer NOBODY questions you. Nobody says how was it diagnosed. Was it by blood tests or biopsies? But with celiac people have the nerve to ask how you found out. LIE to them! Tell them it was blood tests and then move on if you are self diagnosed. They dont' need to know and it's none of their business.

I have a huge bitterness and anger toward doctors who torture patients with endoscopy to "double check" the diagnosis when they know damn well that blood tests are adequate. It's unethical and it's against the hypocratic oath. They promise to do no harm, yet so many on this board were harmed by staying on gluten when they were already so sick.

You got me ranting now. This is a big hot button issue with me.

I don't know exactly what you meant by your comment regarding cancer medications, but I took that quite offensively. I am a cancer survivor myself and when I read your comment it made me feel like you think all cancer patients live poor lifestyles and think its ok if they get cancer cause the drugs will get rid of it all, just look at the cancer death rates every year. I am also an oncology nurse and will not deny that certain cancers are brought on by lifestyle habits but not all of them. I personally was only 18, pretty young in my book to get cancer, chances are I had not done too much damage to my body at that time. And what about these infants that get cancer they did not do anything to get cancer. Also my mother in law is currently fighting cancer and before she got sick she was a personal trainer and did drink or smoke. Also just because people eat fruits does not mean they are not taking in chemicals, unfortunately our government is so money hungry that chemicals have seemed into pretty much every bit of soil we have, I wonder how 'organic' organic fruits and vegetables really are.

[Jestgar]

I don't know exactly what you meant by your comment regarding cancer medications, but I took that quite offensively. I am a cancer survivor myself and when I read your comment it made me feel like you think all cancer patients live poor lifestyles and think its ok if they get cancer cause the drugs will get rid of it all, just look at the cancer death rates every year.

I can easily see your interpretation, but the feeling that I got when I read SSG's post was that as a society we've become less aware that we can take care of ourselves and prevent disease because we've all accepted the idea that drugs would cure anything. I thought the cancer reference was more of an extreme example rather than an assumption on her part that people with cancer didn't take care of themselves.

[T.H.]

I have a huge bitterness and anger toward doctors who torture patients with endoscopy to "double check" the diagnosis when they know damn well that blood tests are adequate. It's unethical and it's against the hypocratic oath. They promise to do no harm, yet so many on this board were harmed by staying on gluten when they were already so sick.

I must admit, I have a bit of angst over this as well. A close friend's daughter nearly died because of this kind of crap. Her daughter had the celiac disease that triggered and got really bad, really fast. She had their daughter on chicken broth for 2 months, while waiting to see a specialist, because everything else (full of gluten) was making the little girl throw up.

When the specialist decided to have her tested for celiac disease, they told mom to put the little girl on a gluten diet before the test. She was vomiting every day, losing weight, and when they did a few tests just after the endoscopy, her immune system had completely tanked. Mom was warned to keep the little girl at home, away from anyone sick, and they were going to have to test her again in a few days because they were expecting to admit her to the hospital to 'find out what was causing this.'

When she was asking them if the gluten challenge was causing all these issues, they assured her that it couldn't be. Gluten challenges didn't cause this kind of thing. They kept that opinion until the biopsy results came back positive and the little girl going off of gluten suddenly had her immune system recovering.

The mom was really furious about it, both with herself for not stopping it sooner, and with the doctors, too. Before then, she'd been a very trusting person when it came to her doctors. Not any longer. Now she questions everything, and when they wanted to do a gluten challenge on a second family member who started having gluten issues, she told them to go take a hike.

The level of outright ignorance in the medical profession about potential damage that can occur from acting on the doctor's orders is criminal, IMHO. If a doctor is going to ask a patient to DO something, they should know what the consequences may be, and make sure their patients are made aware of it. I have rarely met a person, asked to go on a gluten challenge, who was told what the potential risks were.

Ugh, major hot button with me, too.

...but to answer the original question

I know some people need the diagnosis for legal reasons. For dealing with schools, for example, or occupations where we might need to be able to have access to special food, or sometimes dealing with ex-spouses who don't believe that a child with shared custody needs a special diet. That sort of thing, I can understand the concern to make sure a we or our kids are diagnosed 'officially.'

I many of us have been told for so long, by so many professionals, that we're hypochondriacs, or that it's all in our heads, that it can be hard to trust ourselves anymore. Having a diagnosis is kind of validating in that case. It can also make dealing with doubting spouses, parents, or children easier, especially if we all have to live in the same house.

[Britgirl]

I am one of the lucky ones who got a positive blood test that confirmed my diagnosis. My mother is a super sensitive so that kind of sealed the deal for my MD. So glad I didn't have to go through the torture of an endo.

[espresso261]

Before an official diagnosis, i diagnosed myself, cut out gluten and felt much better. I told myself, "i've never been tested for cat allergies, but i know when i'm around cats i become incredibly sick and when i am not around cats, i am not sick. No one around me ever questioned this, so why would they question gluten intolerance" However, when i began telling people that i had a "gluten intolerance" (didn't say celiac at that time because it wasn't "official"), no one took me seriously. My italian family was seriously in denial that "a nice dish of macaroni" could ever make anyone feel sick..it must be salt, sugar, sugar substitute, alcohol, stress, lack of sleep..." it was nuts. When out with coworkers/friends, I was told that if i just put on some weight, then my body wouldn't react so negatively when i eat "bad" food on the weekends. I am fairly thin, and people have assumed in the past that i have an eating disorder. it was hard enough defending myself in that argument in the past when i WASN'T analyzing food labels and making special requests at restaurants (and ultimately avoiding all of the fried "bad" items when out to eat).

in my situation, i didn't get the tests done for me, i got them done for everyone else. it is still a challenge in most of these situations, but knowing/sharing that i have an actual diagnosis has helped so much. Celiac is a mystery to many people in this country... until more people are aware of what it is and what it does, an official diagnosis is almost neccesary unless you want to constantly defend yourself and your actions. Its sad, but unfortunately true.

[psawyer]

So glad I didn't have to go through the torture of an endo.

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.

[mommida]

Not everything is Celiac. There is a list of other disorders that a scope can be done to rule out, or diagnose. Some of the symptoms are very close to Celiac. At the point my daughter was having "glutening" symptoms after having diagnosed with "probable" Celiac, she was diagnosed by scope with Eosinophilic Esophagitus. I searched the house for hidden gluten, because the reactions were the same.

If you really need to know what is going on internally, sometimes you have to scope.