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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 think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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