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


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#91 beebs

 
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Posted 05 December 2011 - 02:47 PM

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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#92 Katrala

 
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Posted 05 December 2011 - 03:51 PM

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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#93 beebs

 
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Posted 05 December 2011 - 03:55 PM

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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#94 Chad Sines

 
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Posted 05 December 2011 - 06:19 PM

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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#95 beebs

 
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Posted 05 December 2011 - 07:14 PM

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

 
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Posted 05 December 2011 - 07:51 PM

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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#97 Roda

 
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Posted 05 December 2011 - 07:58 PM

@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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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#98 mushroom

 
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Posted 05 December 2011 - 08:12 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#99 beebs

 
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Posted 05 December 2011 - 08:14 PM

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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#100 mushroom

 
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Posted 05 December 2011 - 08:14 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#101 Roda

 
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Posted 05 December 2011 - 08:34 PM

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

Isn't that the truth?! However, I do have decent insurance so that's good. Hopefully they don't jack my rates so high that I can't afford it any more. I'm happy with my private insurance and don't want the government plan if it comes to pass.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#102 Linus

 
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Posted 05 December 2011 - 08:38 PM

I found out with endoscopy first (did not expect it due to few symptoms) and a follow up blood test. My daughter has it too. I needed a diagnosis officially for any concerns regarding her school. An official diagnosis in my opinion should end at a blood test.

One advantage to a diagnosis is a tax write off for the cost differential in gluten free foods. If your medical costs are over the threshold, you can start deducting. It is a lot of work, and not worth it individually. As a family it makes since.

Sometimes other family members need proof of the desease (not in the head).
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#103 Roda

 
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Posted 05 December 2011 - 08:42 PM

I wanted the biopsy because I thought that is what I should do after positive blood work(biopsy was positive). I also wanted to rule out any other issues too.

My youngest son had positive blood work, but we did not do a biopsy on him. I am considering gene testing to get his "official diagnosis."

My oldest son has had negative blood work for the past three years. I debated on trying him gluten free for about two years. I couldn't bring myself to commit him to it in light of the negative testing. In Aug. we did consult with a GI and had a scope/biopsy done to see what may be going on or if he was possibly a seronegative celiac. Nope it was negative. However, I don't regret exhausting all the testing on him. It actually helped me in the decision to trial him gluten free. I know I will not get a diagnosis on him, but that's alright. At least we went through the process. I'ts been three months now and he is doing great. Gluten definately bothers him, now matter what you call it. I suspect if he was to continue down the gluten road he probably would develop full blown celiac as an adult. Just my thought.
  • 0

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#104 Katrala

 
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Posted 06 December 2011 - 01:58 PM

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


That is true.

It's also true that just because you feel better when you don't eat gluten doesn't mean you *are* celiac.

There are a variety of reason for a lack of correct diagnosis. All are frustrating.
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Positive Celiac (Blood & Biopsy) - April 2011
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#105 ravenwoodglass

 
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Posted 06 December 2011 - 02:29 PM

It's also true that just because you feel better when you don't eat gluten doesn't mean you *are* celiac.


It is also true that just because your tests are negative doesn't mean you aren't celiac. It was doctors all out faith in the accuracy of blood work that lead me almost to deaths door before I was diagnosed. That thinking cost me many, many painfilled years.
As I have said before since folks with DH are diagnosed celiac without any gut damage at all there is no reason not to think that just because a biopsy is negative someone is not celiac. There are folks who have had a false negative on biopsy and then had a pill cam and the damage was past where the scope could reach.
Personally I don't care whether someone calls themselves celiac or Gluten Intolerant. Both are autoimmune mediated. The need for the diet is the same and the possibility of dire consequences is the same if they continue to eat gluten.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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