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Neg. Blood Test... Endoscopy Next?


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#1 taynichaf

 
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Posted 06 May 2013 - 01:20 PM

2nd blood test = negative!!... And once again, the doctor only did one test. She gave me an option of the next step of the biopsy.... but should I even bother?? Or should I just end my testing here and concider myself non celiac gluten intolerant?


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#2 Deaminated Marcus

 
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Posted 06 May 2013 - 01:43 PM

HA !  :o   We're in the same boat but I was there first.

 

Can you tell us which test?

 

It's so frustrating to see the doctor didn't do the panel.  :angry:

When I was researching on Celiac.com, I read of people who had only one positive on the panel.

When the doctor only does one test you have less chances + you were gluten free.

 

I don't think you should assume you have gluten intolerance.

Back in 2010 my PCP (not the one I have now) assumed the same thing

without testing me at all and all my problems returned in 2011.

I kept thinking it was hidden gluten but then I was just eating produce.

By then it was too late to do the testing.

 

Now I don't know what I have.

Though the food intolerance blood test showed I have a wheat intolerance + many others.

 

Check out this information:

 

http://www.uhs.nhs.u...hnsdisease.aspx

 

and 

 

http://glutenfreewor...y/#.UYgjJWIRbeU

 

 

It's better to be patient and find out what you have then to be guessing forever.  -_-

 

Marcus


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#3 taynichaf

 
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Posted 06 May 2013 - 02:24 PM

HA !  :o   We're in the same boat but I was there first.

 

Can you tell us which test?

 

It's so frustrating to see the doctor didn't do the panel.  :angry:

When I was researching on Celiac.com, I read of people who had only one positive on the panel.

When the doctor only does one test you have less chances + you were gluten free.

 

I don't think you should assume you have gluten intolerance.

Back in 2010 my PCP (not the one I have now) assumed the same thing

without testing me at all and all my problems returned in 2011.

I kept thinking it was hidden gluten but then I was just eating produce.

By then it was too late to do the testing.

 

Now I don't know what I have.

Though the food intolerance blood test showed I have a wheat intolerance + many others.

 

Check out this information:

 

http://www.uhs.nhs.u...hnsdisease.aspx

 

and 

 

http://glutenfreewor...y/#.UYgjJWIRbeU

 

 

It's better to be patient and find out what you have then to be guessing forever.  -_-

 

Marcus

It was the TTG IGA AB test.... I think it's better to be patient then to be guessing forever too:/ But now I just have my doubts.

 

How do you get tested for food intolerances??


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#4 Deaminated Marcus

 
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Posted 06 May 2013 - 05:25 PM

 Well it's too early to have doubts.

Maybe your gluten challenge was too short.

 

Did she check your total IgA?    You need that test to be done also.

 

And as you know from reading here, you have to include the tests DGP-IgG and DGP-IgA.

Lots of people on this site tested negative for tTG but positive for a DGP test.

 

Find out from the lab the code for a proper panel and in a month or 2 go see the doctor with the Celiac panel code 

that way she can't just give you a single test.

 

I think you should get checked by an allergist for food allergies and environmental allergies

to check what is causing your breathing difficulties.

 

About the food intolerance panel:

I was keeping a food diary for over a year and figured out some of the foods that were causing

me aches and pains like kidney beans, etc but some were too tricky to figure out so I did my online

research into the Food Intolerance test

and I ate foods on the list over the month to stimulate my immune system and then I did the blood test which covers over 200 foods 

and the results came back in the form of a coloured chart: red for highly intolerant and yellow being medium and green being ok.

Many matched what I had figured with my food diary and self testing but I also found others I hadn't suspected like eggs and peas.

It's an expensive test and some say it's not scientifically proven to be accurate but I'm happy I took it. 

I have no regrets.

Look at your local labs web site to see if they offer it or phone them. 

 

......................................................................................................................................................

From the symptoms you describe in your other post you should read about Crohns disease.

It also causes mouth sore.

 

http://www.uhs.nhs.u...hnsdisease.aspx


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#5 nvsmom

 
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Posted 06 May 2013 - 06:07 PM

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.  :)


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#6 Scarletgrrrl

 
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Posted 07 May 2013 - 03:50 AM

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.   :)

I am in the same boat. I had the blood test done just over a month ago which came back negative. I hadn't had any gluten for 6 days before the test so i don't know whether that had anything to do with it. I am not even sure which test she ordered. I will have to ask her for a copy next time I see her. I got a referal to a specialist who is going to do an endoscopy in July. I am going to have to reintroduce gluten which I am a little scared to do. I have had all these symptoms disappear since I stopped eating it: tinnitus, tingling in my toes, back and jaw pain, arthritis in my wrist. Pretty scary stuff. I really want to know for sure whether I am celiac which is what I suspect or NCGI.


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#7 notme!

 
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Posted 07 May 2013 - 09:14 AM

my blood test was negative, too.  my GI already knew that i had been eating gluten-free but she had me tested anyway - BUT - she also tested me for many other things, to rule them out.  (like crohn's, thyroid, etc)  i got my dx when i had the endoscopy.  in fact, she could actually see the damage.  after i got rid of the wheat, and i mean for quite a while, other things (that maybe i thought were caused by other allergies) cleared up as well.  good luck :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#8 Deaminated Marcus

 
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Posted 07 May 2013 - 09:31 AM

notme!     WOW, what an inspiring post.  A GI doctor who is thorough and who investigates!  :)

 

My blood tested negative and my GI doctor says I don't fit the profile  (ie: under nourished-skinny-puking)

 

I agree notme!,  a good doctor investigates for other conditions too as Celiac can mimic other conditions

or other conditions can also co exist with with Celiacs.


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#9 taynichaf

 
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Posted 07 May 2013 - 11:01 AM

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.   :)

Before I was so sure that I just needed a biopsy and then this would all be over with... But I think this gluten challenge is making me so anxious and overwhelmed.. ughh. And both times I went to the doctor I wrote down all the celiac tests and gave it too them and I even underlined and bolded the world FULL celiac panel..


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#10 Deaminated Marcus

 
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Posted 07 May 2013 - 11:17 AM

Was it a handwritten note or did you print it . :unsure:

Were the fonts big enough?

Did the doctor have her glasses on? B)

 

:)

 

 

You do all the work and she still messes it up.

That is so frustrating !  :wacko:  


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#11 notme!

 
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Posted 07 May 2013 - 12:09 PM

notme!     WOW, what an inspiring post.  A GI doctor who is thorough and who investigates!  :)

 

My blood tested negative and my GI doctor says I don't fit the profile  (ie: under nourished-skinny-puking)

 

I agree notme!,  a good doctor investigates for other conditions too as Celiac can mimic other conditions

or other conditions can also co exist with with Celiacs.

the profile lolz - you're not a serial killer!  (cereal killer?  killed by cereal?  lolz..)

 

more like caused by celiac than a co-existence.  many things i did not realize (because they had come on so gradually and over a long period of time) that i was suffering from... ie:  i had a 'dull' headache all the time.  i only noticed the extremely painful migraines <which went away almost immediately after changing my diet) i woke up one morning and my head didn't hurt.  at all.  i didn't notice it (because i was used to it) until it went away.  this thing will hit *all* your systems if it is left untreated.  

 

i did get a good doctor - i know many are not as savvy -  i was also as skeptical as anybody on here who is having doubts about their diagnosis.  feeling so bad you are sure you have cancer, etc, brain tumor i guess she was trying to convince me, too, that it wasn't anything else.  and probably a little 'c.y.a.' on her part just to make sure :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#12 taynichaf

 
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Posted 07 May 2013 - 12:25 PM

Was it a handwritten note or did you print it . :unsure:

Were the fonts big enough?

Did the doctor have her glasses on? B)

 

:)

 

 

You do all the work and she still messes it up.

That is so frustrating !  :wacko:  

It was hand written, but it was readable! The first doctor said they didnt have all the tests I asked for... And the second doctor I dont think even checked. And I pointed it out to BOTH of them! Very frustrating... And the thing is I have been going to doctors for a few years now and have had a lot of testing, so everything else is pretty much ruled out.. Just gata be patient:/


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#13 taynichaf

 
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Posted 07 May 2013 - 12:31 PM

my blood test was negative, too.  my GI already knew that i had been eating gluten-free but she had me tested anyway - BUT - she also tested me for many other things, to rule them out.  (like crohn's, thyroid, etc)  i got my dx when i had the endoscopy.  in fact, she could actually see the damage.  after i got rid of the wheat, and i mean for quite a while, other things (that maybe i thought were caused by other allergies) cleared up as well.  good luck :)

Okay, this gives me hope! Thats great that your feeling better! I'm going to message you with a few questions..


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#14 taynichaf

 
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Posted 07 May 2013 - 12:36 PM

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.   :)

I think I need to have the endoscopy so i can no for sure... I'm just getting soo frustrated with all of this! But ohh welll... I really tried getting my doc to order those tests! But I don't want them to think, that I think, I know more about all this stuff then them...if that makes sense? ha

 

If I don't go thru with the biopsy, then I will DEMAND those tests! But I think I'm just fed up with the blood tests atm...

 

Thank you :)


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#15 Deaminated Marcus

 
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Posted 07 May 2013 - 12:48 PM

Keep eating a few slices of bread till the next blood tests.

Maybe providence feels you don't have enough gluten yet?

Next time look at the blood test sheet when she hands it to you and give it back if it's not what you asked for.

Just tell her you read it in a Celiac book. (say Dr Green said so).

Don't feel bad about making the doctor feel bad about your blood test list.

You are the client and she's so busy she'll forget about you after you've left.


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