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Why Do Some People Feel They *must* Have An Endoscopy?
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106 posts in this topic

Oh Marilyn! W - O - W!!!

If is so sad it almost makes me laugh. My sister-in-denial can't eat rocket. Nothing else bothers her, mind you. :ph34r:

It is so sad. What's funny is that my non celiac disease sister would make her be compliant with the diet. I always let Mom have what she wanted.

What is rocket?

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One thing i would add here is that most do not truly self-diagnose. They have been to many GIs and other doctors along the way who ruled out celiac and tested for other things. Their final diagnosis is the self diagnosis after the GI says IBS and is content to let the patient suffer the rest of their life. I was at GIs from age 14 to age 36 and none could figure it out after blood tests and biopsies. Now they say "yeah, doctors often miss celiac. Good thing YOU figured it out."

Which is exactly why things need to change! But it won't change if we all just drop off the radar, Although - as I pointed out before, I think a dx is not the most important thing -its ruling out all the other terrible things that is more important. Which is why I think testing should happen, and then if all else fails then going gluten free is a good idea. I don't mean 20 years of testing either, I mean bloods, biopsy shows nothing - still feel sick, go gluten free see if it works. Ya know?

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Rocket is a type of salad leaf (Its so yucky! haha!) It tastes kind of bitter or mustardy or peppery even? or something, not sure!

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Which is exactly why things need to change! But it won't change if we all just drop off the radar, Although - as I pointed out before, I think a dx is not the most important thing -its ruling out all the other terrible things that is more important. Which is why I think testing should happen, and then if all else fails then going gluten free is a good idea. I don't mean 20 years of testing either, I mean bloods, biopsy shows nothing - still feel sick, go gluten free see if it works. Ya know?

I get what you are saying completely and do agree that you should try for testing if possible although it is not essential. Many are without insurance and even with insurance, the cost of multiple testings is very expensive. The thing is many docs will not even biopsy unless u have a positive blood test. I have had three upper endoscopies and biopsies with each; however, I have no idea if they looked for celiac or not as i was essentially told my negative blood test ruled it out as ever being a possibility. And there are also many who had 2-3 negative biopsies before a positive, so a biopsy would potentially keep us unhealthy as that single biopsy rules out celiac forever in the docs mind.

Had I read on this site in March about blood tests or biopsies being necessary for Celiac, then i would never have tried gluten-free. It was the intelligent responses of many saying that tests are often negative and therefore not essential for most. The gluten-free diet is the one fool proof test and many doctors do accept it as proof positive.

We need a more realistic diagnostic plan. Try the blood tests first. If they say yes, then biopsy. If they say no, then try gluten-free. The gluten-free is the true indicator.

The people who shared the near irrelevance of the biopsy and other tests saved my life.

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But what is the point of even a diagnosis for anything other than self confirmation? What is the doctor going to do for you?...recommend a gluten-free diet. That is all the support they will give because that is all they can do. Unless I am missing something major there is really no need or use in convincing the physician as there is nothing they can do for you.

You are right, as to the part of the picture you are seeing. YOU will behave the same, whether or not you have documentation of your disability.

But that isn't the end of it. Celiac disease is a disability as defined by the Americans with Disabilities Act. Others must respect and make reasonable accommodation if you have the documentation. Consider schools, colleges, hospitals, employers, retirement residences--any situation where you are not in complete control of your food AND your environmental risk of contamination to that food.

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If you need the diagnosis, then yes, absolutely get it. For most of us, we do not need special accommodations or the label. The thing is you can call many GIs and tell them your symptoms and gluten-free helped and they will diagnose you as celiac. I have had a few primary care since then who stated they see the gluten-free diet as the one true diagnostic tool. One even asked if I wanted him to note the diagnosis on my record which I did not.

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I get what you are saying completely and do agree that you should try for testing if possible although it is not essential. Many are without insurance and even with insurance, the cost of multiple testings is very expensive. The thing is many docs will not even biopsy unless u have a positive blood test. I have had three upper endoscopies and biopsies with each; however, I have no idea if they looked for celiac or not as i was essentially told my negative blood test ruled it out as ever being a possibility. And there are also many who had 2-3 negative biopsies before a positive, so a biopsy would potentially keep us unhealthy as that single biopsy rules out celiac forever in the docs mind.

Had I read on this site in March about blood tests or biopsies being necessary for Celiac, then i would never have tried gluten-free. It was the intelligent responses of many saying that tests are often negative and therefore not essential for most. The gluten-free diet is the one fool proof test and many doctors do accept it as proof positive.

We need a more realistic diagnostic plan. Try the blood tests first. If they say yes, then biopsy. If they say no, then try gluten-free. The gluten-free is the true indicator.

The people who shared the near irrelevance of the biopsy and other tests saved my life.

I agree with everything you just said. I also agree that diagnosis of celiac should change = the testing just has too many false negatives!

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If gluten free eating "cures" you, then you are celiac. period.

There is a difference between celiac disease and non-celiac gluten intolerance, so, no, you aren't necessarily celiac just because eating gluten-free "cures" you.

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But that isn't the end of it. Celiac disease is a disability as defined by the Americans with Disabilities Act. Others must respect and make reasonable accommodation if you have the documentation. Consider schools, colleges, hospitals, employers, retirement residences--any situation where you are not in complete control of your food AND your environmental risk of contamination to that food.

This is a good point.

I've had insurance troubles already regarding medications that needed to be changed and it required proof of diagnosis to get them to not charge me the higher copay.

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Rocket is a type of salad leaf (Its so yucky! haha!) It tastes kind of bitter or mustardy or peppery even? or something, not sure!

Oooooh, I love rocket (aka arugula). It is one of my favourite greens because it goes with so many things. :P

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"Oooooh, I love rocket (aka arugula). It is one of my favourite greens because it goes with so many things."

I love it too! I'm growing rocket, just didn't know it, thought it was arugula. :)

Thanks for solving the mystery, Love2Travel!

(I live in the deep south, so this is our good growing season.) :D

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There is a difference between celiac disease and non-celiac gluten intolerance, so, no, you aren't necessarily celiac just because eating gluten-free "cures" you.

I totally agree with you Katrala. Instead of angsting over why people test negatively to celiac so commonly, we need to be using that known fact to develop a better understanding of gluten intolerance and the seriousness as an auto immune disorder. Until we open up our point of view on this, we're going to continue to have the frustrations AND DANGER with the situations of humans testing negative for celiac who could surely see relief and good health by removing gluten completely from the system. As long as we continue to try to fit everyone into the celiac mold, we'll never make headway with universal education.

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"Oooooh, I love rocket (aka arugula). It is one of my favourite greens because it goes with so many things."

I love it too! I'm growing rocket, just didn't know it, thought it was arugula. :)

Thanks for solving the mystery, Love2Travel!

(I live in the deep south, so this is our good growing season.) :D

Our growing season won't be happening until the end of May. I'd have to plow through the snow to get at the arugula! :D

Anyway, back to the topic at hand - as I stated above I needed the biopsy done psychologically as I just could not accept that I had celiac as I was asymptomatic. I needed more proof. Now after being on this board I know better!

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When I first got diagnosed I was told that I could get a tax right off on my gluten free foods, but I had to be able to prove that I have to do it for health reasons and not just as a diet. I haven't looked into that very much but that was after I had the endoscopy.

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I totally agree with you Katrala. Instead of angsting over why people test negatively to celiac so commonly, we need to be using that known fact to develop a better understanding of gluten intolerance and the seriousness as an auto immune disorder. Until we open up our point of view on this, we're going to continue to have the frustrations AND DANGER with the situations of humans testing negative for celiac who could surely see relief and good health by removing gluten completely from the system. As long as we continue to try to fit everyone into the celiac mold, we'll never make headway with universal education.

I love how you worded this.

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But Celiacs often test negative, and then have another one and they are positive, so a negative test does not always meat Gluten intolerance. There needs to be more understanding in the medical community. For example, my child tested negative in the bloods and borderline in the biopsy - not enough for a diag, but the specialist he sees does not say he isn't celiac, he says he doesn't know at this point. Drs need to realise that a negative blood tests (especially) but even a negative biopsy does not necessarily mean no Celiac disease.

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But Celiacs often test negative, and then have another one and they are positive, so a negative test does not always meat Gluten intolerance. There needs to be more understanding in the medical community. For example, my child tested negative in the bloods and borderline in the biopsy - not enough for a diag, but the specialist he sees does not say he isn't celiac, he says he doesn't know at this point. Drs need to realise that a negative blood tests (especially) but even a negative biopsy does not necessarily mean no Celiac disease.

A family history of celiac is definitely something that should be taken into consideration.

I think a specialist saying "I don't know" is a good thing. They are admitting they aren't ruling anything out.

No, a negative test does not always mean NCGI. It could certainly be a false negative.

However, I do feel that people are scared of the NCGI label and our society only makes them be more afraid of it. Everyone has seen the "gluten-intolerant eye-roll."

Contrary to SSG's opinion of my opinion (meant in jest ;) ) I don't think every case is cut and dry.

I also feel that some people are more trusting of doctors than others. I'm not debating this as right or wrong, just putting it out there. Perhaps, at times, some of us are too trusting.

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I think so too, I think I learnt early on that Drs are fallible - they make mistakes, they are human! I do think there is a difference in gluten intolerant and Celiac though - and I think it is best to try and find out which is which. But maybe thats just all my other autoimmune diseases (that were probably triggered by gluten) talking. Who knows.

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Once you get that single negative on a biopsy, many docs will write off Celiac permanently and never test again. Even here some people think negative biopsy means not Celiac.

Here is what happens: Negative- You are not celiac, just intolerant...add time...still negative- you are intolerant. repeat, repeat...one day maybe if you are lucky and you get enough doctors to test you, you are positive- welcome you can now say you are celiac.

You can't be in their club without a positive biopsy. Pretty sad that we see some pushing the label of gluten intolerance vs celiac until you meet their standards.

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But we know that it's not true that a neg biopsy doesn't mean you aren't celiac:)

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Most of us do, some of those here keep throwing the term gluten intolerant out until they get a positive biopsy like they have to guard the celiac club.

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@Jestgar

In the US you don't get a discount but you do get a tax write-off for the difference between the price of "regular" food and it's gluten-free substitute with an "official" diagnosis (biopsy).

They make it very difficult to do. I have a medical flexible spending account and I looked into this. I was told it was up to the employers plan if they will let you do it. My plan wouldn't allow me. Also do not have enough out of pocket(the percentage of the AGI) to itemize on my taxes. So for a lot of us we are SOL.

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Most of us do, some of those here keep throwing the term gluten intolerant out until they get a positive biopsy like they have to guard the celiac club.

Well, there is a double lock on the door tht leads to the club, and before ithe keys will work you have to give the special password and handshake to the little man sitting at the door of the vault. but ah, once inside, look what awaits you --

the same things that await you outside :P

:lol: :lol:

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Most of us do, some of those here keep throwing the term gluten intolerant out until they get a positive biopsy like they have to guard the celiac club.

Thats interesting, surely it depends on a whole range of things? symptoms, family history, other autoimmune disease etc? I haven't had a biopsy, but the Celiac Specialist the other day that he thought it was absolutely Celiac for me- based on my family history, severity of symptoms and other autoimmune diseases, of course - I still wont get an official diagnosis or anything. :P

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They make it very difficult to do. I have a medical flexible spending account and I looked into this. I was told it was up to the employers plan if they will let you do it. My plan wouldn't allow me. Also do not have enough out of pocket(the percentage of the AGI) to itemize on my taxes. So for a lot of us we are SOL.

In order to qualify for the medical expense itemization you have to have had an exceptionally unhealthy year, one that you would not wish to have in order to qualify :o

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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