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


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105 replies to this topic

#76 Marilyn R

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Posted 04 December 2011 - 02:12 PM

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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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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#77 beebs

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Posted 04 December 2011 - 02:21 PM

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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#78 beebs

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Posted 04 December 2011 - 02:23 PM

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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#79 Chad Sines

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Posted 04 December 2011 - 02:58 PM

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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#80 psawyer

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Posted 04 December 2011 - 02:58 PM

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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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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#81 Chad Sines

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Posted 04 December 2011 - 03:04 PM

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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#82 beebs

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Posted 04 December 2011 - 03:26 PM

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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#83 Katrala

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Posted 04 December 2011 - 04:17 PM

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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#84 Katrala

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Posted 04 December 2011 - 04:19 PM

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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#85 love2travel

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Posted 04 December 2011 - 04:20 PM

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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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#86 Marilyn R

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Posted 04 December 2011 - 05:08 PM

"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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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#87 kwylee

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Posted 05 December 2011 - 08:24 AM

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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#88 love2travel

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Posted 05 December 2011 - 08:58 AM

"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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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#89 moose07

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Posted 05 December 2011 - 11:29 AM

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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#90 Katrala

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Posted 05 December 2011 - 12:02 PM

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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