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Should I Get The Endoscopy?


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11 replies to this topic

#1 TurdFerguson15

 
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Posted 15 August 2013 - 12:10 PM

I have tested positive for both genetic markers and based on my symptoms and history of illness, the GI dr. said it's safe to assume that I have Celiac (I definitely have a gluten intolerance).  He also wanted me to schedule an Endoscopy but I'm debating on it since I have been gluten-free (as well as dairy/egg/sugar/alcohol/pop/processed foods) to heal my Leaky Gut Syndrome. 

 

Is it worth it to get it done even if my intestine has already started healing?  Thanks!


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#2 GottaSki

 
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Posted 15 August 2013 - 01:46 PM

In my opinion - yes.

 

You have no way of knowing at this point what damage has been done.  For some of us healing takes a very long time - and in rare cases (mine) damage continued for several years after gluten was completely removed.

 

While I hope that you heal quickly, I think it prudent to take a good look along with biopsies even if you recently removed gluten.  This way if you don't heal as quickly as hoped there will be something to compare down the road.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 AlwaysLearning

 
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Posted 15 August 2013 - 04:06 PM

There are pros and cons to having a celiac diagnosis.

Pros can include being able to follow up to monitor the healing process, can carry some clout when dealing with friends, family, or even doctors who don't believe you, or could help you stay motivated to avoid gluten. In some countries with nationalized health care, there are monetary benefits to help offset the costs of foods and in the U.S. you can take tax deductions for the difference in the cost of gluten free foods.

Cons could include being turned down or having to pay more for medical insurance (in the U.S.) or having to go through the retox period. The equivalent of six pieces of bread a day for six weeks sounds like hell to me. You'd have to have an invasive procedure done, plus, there is always the potential of having a false negative test result.

Before you decide, I'd head over to the publicity section of the forum and find some of the fairly recent posts about future testing methods that are being developed. There is talk about more reliable testing methods that use different markers than are currently looked at, shorter retox periods, and more accuracy.

For those who are already gluten free, I'd also take into consideration what your doctor thinks is needed, how much of a hard time your friends and family may give you without the full-on diagnosis, and if you have the willpower to stay gluten free without it.

But I think it really is a personal decision. Some people seem to feel the need to have the formal diagnosis. For others, what their bodies are telling them is enough.


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#4 GottaSki

 
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Posted 15 August 2013 - 04:28 PM

There are pros and cons to having a celiac diagnosis.

Pros can include being able to follow up to monitor the healing process, can carry some clout when dealing with friends, family, or even doctors who don't believe you, or could help you stay motivated to avoid gluten. In some countries with nationalized health care, there are monetary benefits to help offset the costs of foods and in the U.S. you can take tax deductions for the difference in the cost of gluten free foods.

Cons could include being turned down or having to pay more for medical insurance (in the U.S.) or having to go through the retox period. The equivalent of six pieces of bread a day for six weeks sounds like hell to me. You'd have to have an invasive procedure done, plus, there is always the potential of having a false negative test result.

Before you decide, I'd head over to the publicity section of the forum and find some of the fairly recent posts about future testing methods that are being developed. There is talk about more reliable testing methods that use different markers than are currently looked at, shorter retox periods, and more accuracy.

For those who are already gluten free, I'd also take into consideration what your doctor thinks is needed, how much of a hard time your friends and family may give you without the full-on diagnosis, and if you have the willpower to stay gluten free without it.

But I think it really is a personal decision. Some people seem to feel the need to have the formal diagnosis. For others, what their bodies are telling them is enough.

 

I don't disagree with much of this -- except -- I have not heard any major Celiac Disease Center suggest more than the equivalent of 1-2 pieces of glutenous bread when conducting a gluten challenge.

 

To be clear...in this case I was suggesting that this person go ahead and have the endoscopy the doctor recommended -- it didn't sound like they were talking about doing a challenge -- just an endoscopy to take a look and biopsy the small intestine in it's current condition.  

 

Perhaps I misunderstood.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 nvsmom

 
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Posted 15 August 2013 - 04:48 PM

Have you had the blood tests yet? DGP, tTG and EMA?


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#6 AlwaysLearning

 
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Posted 15 August 2013 - 04:51 PM

I don't disagree with much of this -- except -- I have not heard any major Celiac Disease Center suggest more than the equivalent of 1-2 pieces of glutenous bread when conducting a gluten challenge.

 

To be clear...in this case I was suggesting that this person go ahead and have the endoscopy the doctor recommended -- it didn't sound like they were talking about doing a challenge -- just an endoscopy to take a look and biopsy the small intestine in it's current condition.  

 

Perhaps I misunderstood.

TurdFerguson15 said he was already gluten free, which means a retox would be needed for any testing to be done at this point.

But good to learn that less gluten may be required than what others have said elsewhere.


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#7 GottaSki

 
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Posted 15 August 2013 - 05:04 PM

TurdFerguson15 said he was already gluten free, which means a retox would be needed for any testing to be done at this point.

But good to learn that less gluten may be required than what others have said elsewhere.

 

Yes, gluten should not be removed prior to diagnosis -- but some do have an endoscopy after gluten is removed without a challenge as they are not able to tolerate the challenge to take a look at damage and/or biopsy.

 

I was answering only the question as posed.  This member said they already know they are intolerant -- which I took to mean they can not safely ingest gluten.

 

I already said perhaps I was mistaken, but I was answering this particular question -- not a proper diagnosis/gluten challenge procedural question.

 

I also second Nicole's question -- was a complete celiac antibody panel competed?  If not this should be completed as well.  Whether a gluten challenge is possible for this person and how long they have been gluten free would determine whether they should re-introduce gluten and for how long.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 AlwaysLearning

 
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Posted 15 August 2013 - 05:20 PM

GottaSki, I have to ask. 

For purely MEDICAL reasons, what good is the endoscopy/biopsy in your opinion? I know that some people like to get retested later to confirm that healing is taking place, but what benefit is this other than peace of mind when the treatment doesn't actually vary at all?

I'm all for follow up appointments, monitoring hormone and vitamin levels, etc. But the invasive procedure - especially after reading so much about doctors who don't seem to know how to test properly and false negatives - I'll admit that I don't see the need unless you need the diagnosis in order for insurance to pay for something additional.
 


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#9 GottaSki

 
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Posted 15 August 2013 - 05:51 PM

GottaSki, I have to ask. 

For purely MEDICAL reasons, what good is the endoscopy/biopsy in your opinion? I know that some people like to get retested later to confirm that healing is taking place, but what benefit is this other than peace of mind when the treatment doesn't actually vary at all?

I'm all for follow up appointments, monitoring hormone and vitamin levels, etc. But the invasive procedure - especially after reading so much about doctors who don't seem to know how to test properly and false negatives - I'll admit that I don't see the need unless you need the diagnosis in order for insurance to pay for something additional.
 

 

Some of us do not improve after completely removing gluten - in fact I got worse.  Without the initial endoscopy along with full celiac antibody panel and nutrient level data obtained at my diagnosis - I would have had a much harder time remaining completely gluten-free -- after all removing gluten wasn't helping.

 

I had annual biopsies...not to simply "check" or "follow-up" -- I had them because I was not improving -- if the diet alone would have brought symptom resolution - great - for me and others with a multitude of autoimmune symptoms this was not the case.

 

How could I have known four years ago that I would need the data gathered at diagnosis?  I didn't - therefore I strongly promote gathering all possible starting data for those just starting down this road.  I can't tell you how many folks I have helped sort through having to go through a gluten challenge because they or their doctors decide a diagnosis is necessary to sort out their health issues.

 

I have no problem with someone that removes all gluten - improves and never has a biopsy - some of my children and grands are in this catagory -- but they also had the example of what decades of undiagnosed celiac disease looks like -- all cases are different.

 

Aside from my personal story -- there have been many members that had all negative blood work that were only diagnosed via endoscopic biopsy.  

 

Another great reason for official diagnosis is children -- I was diagnosed when my children were teens and young adult -- they would not have had the health improvements they have had without my diagnosis as most of their blood work was negative - only one had a single positive antibody test -- because they carry the genes and had a variety of autoimmune symptoms without major digestive issues they would never have removed gluten without my diagnosis and symptom history.

 

There are so many variances in diagnosis with Celiac Disease -- until better tests become available -- I will continue to strongly promote using all the tools that are currently available to us -- as imperfect as they are.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 AlwaysLearning

 
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Posted 15 August 2013 - 06:22 PM

GottaSki, sorry. More questions. If you don't mind, I'm curious if you ever figured out why weren't you healing in the first four years?

And out of concern, I have to ask, have you at least started to heal now?

And I'll admit, I'm only questioning going through with the invasive testing for those that who are already certain that gluten is causing them problems, have already gone gluten free, and are completely committed to staying gluten-free.


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#11 GottaSki

 
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Posted 15 August 2013 - 06:37 PM

GottaSki, sorry. More questions. If you don't mind, I'm curious if you ever figured out why weren't you healing in the first four years?

And out of concern, I have to ask, have you at least started to heal now?

And I'll admit, I'm only questioning going through with the invasive testing for those that who are already certain that gluten is causing them problems, have already gone gluten free, and are completely committed to staying gluten-free.

 

I'll PM you...as we have added way too much speculation and additional question to this new member's thread.

 

TF15...let us know if you have anymore questions :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 Gemini

 
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Posted 16 August 2013 - 07:28 AM

There are pros and cons to having a celiac diagnosis.

Pros can include being able to follow up to monitor the healing process, can carry some clout when dealing with friends, family, or even doctors who don't believe you, or could help you stay motivated to avoid gluten. In some countries with nationalized health care, there are monetary benefits to help offset the costs of foods and in the U.S. you can take tax deductions for the difference in the cost of gluten free foods.

 

The tax deduction in the US really isn't there.  It falls under medical and now you have to reach 10% of your adjusted gross income to even be able to deduct it.  Most people do not ever reach this minimum.  It will also set you up for an audit and I certainly do not want to deal with the IRS. The amount of record keeping required to document true deductions is not worth the effort on something you most likely will never reach the minimum for.


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