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


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105 replies to this topic

#16 lovegrov

 
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Posted 03 November 2011 - 08:11 AM

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
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#17 Celtic Queen

 
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Posted 03 November 2011 - 08:25 AM

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.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#18 DonnaMM

 
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Posted 03 November 2011 - 01:11 PM

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
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#19 DonnaMM

 
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Posted 03 November 2011 - 01:23 PM

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.
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#20 Jestgar

 
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Posted 03 November 2011 - 01:42 PM

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.
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#21 T.H.

 
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Posted 03 November 2011 - 02:50 PM

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. :angry:

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.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#22 Britgirl

 
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Posted 03 November 2011 - 03:21 PM

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.
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#23 espresso261

 
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Posted 03 November 2011 - 03:45 PM

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.
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#24 psawyer

 
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Posted 03 November 2011 - 04:27 PM

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.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#25 mommida

 
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Posted 03 November 2011 - 05:23 PM

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.
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#26 psawyer

 
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Posted 03 November 2011 - 05:41 PM


Does anyone know of other causes of villi damage?

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.


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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#27 sandsurfgirl

 
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Posted 03 November 2011 - 06:18 PM

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.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#28 mommida

 
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Posted 03 November 2011 - 06:26 PM

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.
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Michigan

#29 Britgirl

 
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Posted 04 November 2011 - 05:08 AM

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.
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#30 Monklady123

 
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Posted 04 November 2011 - 05:53 AM

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! :ph34r:
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