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Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

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#31 rcheltrvel

 
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Posted 18 March 2014 - 04:34 PM

Made it through my endoscopy today, it was a nice sleep! I was relieved yet crying when I woke up. I have been having so much upper stomach pain since this two weeks of torture started, I thought I could have an ulcer. No ulcer but I do have an inflamed stomach (Gastritis) with a lot of bleeding. The Gastro said its from the anti-inflamitories I have been taking for the last few years. While I believe anti-inflams can cause this issue and knew long term use could do this, I think it's so weird that the intense upper stomach pain started the minute I cut out gluten and started adding it back. Coincidence? My regular Dr. today said I just recently started bleeding. So confused!

Anyway, have to wait 10 more days for my Celiac results. Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

At least I can breath and I had my first gluten free day in two weeks and am so happy, even know I am still nursing my gluten hang over from yesterday!
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#32 GottaSki

 
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Posted 18 March 2014 - 05:18 PM

Made it through my endoscopy today, it was a nice sleep! I was relieved yet crying when I woke up. I have been having so much upper stomach pain since this two weeks of torture started, I thought I could have an ulcer. No ulcer but I do have an inflamed stomach (Gastritis) with a lot of bleeding. The Gastro said its from the anti-inflamitories I have been taking for the last few years. While I believe anti-inflams can cause this issue and knew long term use could do this, I think it's so weird that the intense upper stomach pain started the minute I cut out gluten and started adding it back. Coincidence? My regular Dr. today said I just recently started bleeding. So confused!

Anyway, have to wait 10 more days for my Celiac results. Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

At least I can breath and I had my first gluten free day in two weeks and am so happy, even know I am still nursing my gluten hang over from yesterday!

 

Hi Rachel!

 

Glad to hear you had a nice nap.

 

Yes, I have input.  Surprise, surprise. 

 

While gastritis and inflammation in the stomach can be caused by anti-inflammatory usage -- this is the first assumption most GIs make for the cause of inflammation in the digestive tract.  I can only tell you my experience and that is the inflammation in my stomach did not appear until I had stopped all usage of ibuprofen for pain for a period of at least two years and yes...that made my celiac/gastro doc scratch his head a bit ;)

 

It is tough waiting for results from the biopsies -- but you are way ahead of the game because you already know that you cannot tolerate gluten regardless of the results.

 

Rest up, and let us know if you have any questions as you remove gluten from your life :) 


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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 :)


#33 NoGlutenCooties

 
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Posted 19 March 2014 - 04:33 AM

 Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

 

I was lucky in that when I had my biopsy my small intestine was visibly inflamed (I have the pictures) and the doc told me she could tell that I have Celiac without even having to wait for the results to come back.  However, the inflammation can come and go and even when it's there it can be spotty and easily missed.  So I'm not surprised that in your case it wasn't inflamed to the point of being readily visible - seems to happen alot.  I don't know if that decreases the chances of the biopsy coming back negative... but I wouldn't necessarily think so.  To my knowledge, the actual villi damage can also be spotty - so they could still miss it - but it wouldn't completely go away.  I don't think.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#34 IrishHeart

 
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Posted 19 March 2014 - 07:29 AM

Hi Rachel! 

 

The GI tract can be damaged and have inflammation for any number of reasons, such as gastritis or acid reflux or several other

GI conditions. NO GI doctor can diagnose celiac by "just looking" at the intestine.

I have asked my own GI doctor about this and he was emphatic about that. (that's how I was left UnDXed by the guy I went to for 12 years.) 

 

At the time of biopsy, the duodenum appears normal in many people with celiac disease. Some people do

have inflammation, but a doctor who says "It's celiac" based on a visual of inflammation-- is just taking a guess. 

 

http://www.curecelia...guide/diagnosis


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#35 NoGlutenCooties

 
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Posted 19 March 2014 - 09:26 AM

but a doctor who says "It's celiac" based on a visual of inflammation-- is just taking a guess. 

 

Correct.  Just to clarify... this was based on positive blood work and family history PLUS the obvious inflammation.  They did still send the biopsies to confirm and to rule out other causes.  My point was just that sometimes there is visible inflammation and sometimes there isn't.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#36 rcheltrvel

 
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Posted 19 March 2014 - 09:59 AM

Actually, my GI doctor did not confirm Celiacs at all. My regular doctor did based on my 20 year history of symptoms, some deficiencies, raised liver and cholesterol. etc.. plus a positive Celiac blood test. The GI doctor did the endoscopy and said I have a large amount of inflammation and bleeding and he said it could be worsened by possible Celiacs but he said it is from my long term use of anti-inflamitories (for my neck). He said he didn't see anything that could confirm Celiacs but he took at least 6 samples (as I was advised to make sure he did so and I did) and I get my results late next week. He said you really can't tell by the eye. I do not have any ulcer. Just bleeding stomach (lovely!).

 

 

Anyway, doctor gave me small dose of pain relief for my neck (Neurontin) and I started taking vitamin D in a large, prescription dose and also Prilosec. Today is day 2 of Gluten free and I have NO neck pain for almost the first time in my adult life and my stomach pain is completely gone. Like a miracle. I won't say I am cured, but I am surely happy and on my way.

 

 

Today is actully my 42nd birthday and also the first day of my new life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


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#37 IrishHeart

 
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Posted 19 March 2014 - 10:05 AM

 

Actually, my GI doctor did not confirm Celiacs at all. My regular doctor did based on my 20 year history of symptoms, some deficiencies, raised liver and cholesterol. etc.. plus a positive Celiac blood test. The GI doctor did the endoscopy and said I have a large amount of inflammation and bleeding and he said it could be worsened by possible Celiacs but he said it is from my long term use of anti-inflamitories (for my neck). He said he didn't see anything that could confirm Celiacs but he took at least 6 samples (as I was advised to make sure he did so and I did) and I get my results late next week. He said you really can't tell by the eye. I do not have any ulcer. Just bleeding stomach (lovely!).

 

 

Anyway, doctor gave me small dose of pain relief for my neck (Neurontin) and I started taking vitamin D in a large, prescription dose and also Prilosec. Today is day 2 of Gluten free and I have NO neck pain for almost the first time in my adult life and my stomach pain is completely gone. Like a miracle. I won't say I am cured, but I am surely happy and on my way.

 

 

Today is actully my 42nd birthday and also the first day of my new life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

 

 

Happy Birthday!!  and you may discover you do not need that pain medicine at all. Be careful taking it and be sure to taper off it when you want to stop. Docs love giving out that neurontin. <_< Soon, you will probably not need that Prilosec either. (been there/done that--and same thing: horrid neck pain, joint pain, "fibro")  MANY of us have walked this same path. It gets better and better off gluten.

 

My point is whether the biopsy is positive or not, whether they "see anything or not"....you've got a pos. blood test and relief of symptoms off gluten. Sounds like celiac  to me.

 

Hang in there! Enjoy the feeling of "wellness". Cheers, IH


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#38 GottaSki

 
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Posted 19 March 2014 - 12:10 PM

Happy Birthday Rachel!!!

 

Glad you are now able to dump the gluten.  Let us know if you have questions.  I think I mighta already given you the newbie thread started by Irish, but just in case here is the link:

 

http://www.celiac.co...ewbie-info-101/

 

Hang in there and have a wonderful birthday :)


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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 :)


#39 rcheltrvel

 
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Posted 26 March 2014 - 09:10 AM

Hi,

Well 10 days later, I got my Upper Endoscopy report, so confused at this point and disappointed. GI said my Villi look fine, I do have Gastritis with bleeding, as I mentioned. He said probably from years of anti inflams. He said because I have the positive iGG-iGA test, symptoms and a negative biopsy, he now wants me to take the genetic blood test (HLA-DQ2 & DQ8). He said my neck, cognitive, chills, migraines, fatigue, exercise issues, weird allergies and everything else is probably not from any of this. More confused. On top of everything else, he wants me to come back for another procedure, a Colonoscopy, because one doctor I didn't like said I had a trace of blood and he wants to make sure it's nothing more then my stomach bleeding and hemroids. Great! When I got out of the Endoscope, he told me I didn't have to get the Colon procedure because the blood was coming from my stomach but now he changed his tune. I really hope he is doing this to make sure I don't have cancer or something and not just to take my money for another producers. He is a very reputable GI.

Anyway, here are my test results...I asked him to make sure he takes at least 6-8 samples and he said he would. It's hard for me to know from this report how much he actually took and he really didn't sit down with me and show me the report. He just told me, then I asked for the report on my way out.

1) Duodenal Biopsy (Part 2) - no significant histologic abnormality. No evidence of villainous blunting or abnormal inflammatory infiltrate.
2) Duodenal Biopsy (Bulb) - predominatly gastric body mucosa with patchy mild nonspecific chronic inflammation; consistent with ectopic gastric rest.
3) Stomach Biopsy (Antrum). - minimal nonspecific chronic inflammation. A diff-quick strain is negative for helicobacter organisms.
4) Stomach Biopsy (Body) - no significant histologic abnormality. A diff-quick strain is negative for helicobacter organisms.

There were four parts of my stomach tested I'm assuming. 1 & 2 say they took "multiple" pieces of soft tissue ranging from .1 to .3 cm. 3 & 4 said they took one from each. Four cassettes of specimens all together.

What does this all mean?

Thanks, Rachel
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#40 nvsmom

 
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Posted 26 March 2014 - 09:30 AM

'm afraid I can't comment on the endoscopy report. I never had it done myself, so I have not bothered learning much about it. Pages 8-9 of this report go into some detail as to what is normally seen in the biopsy. http://www.worldgast..._long_FINAL.pdf

 

Keep in mind that some celiacs do pass the biopsy - it really isn't that unusual. You have a positive test (tTG IgA I believe) and a positive response to the gluten-free diet as well as a negative response to a gluten challenge... it's probably celiac disease. Did they do the other celiac tests for you? The DGP IgG and tTG IgG? Some people are more positive in those tests than the IgA based ones.

 

Personally, I wouldn't put much stock in the genetic tests. A positive result means you are in the population which is more likely to develop celiac disease but it doesn't tell you if you have it, and a negative result means you are one of those people less likely to get celiac disease but you can still get it... doesn't tell you much. KWIM?

 

If there is no more testing (IgG based tests) then I wish you luck with the gluten-free diet. You either have NCGI or celiac disease but either way the treatment is the same.  :)  I hope you feel well soon.


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#41 GottaSki

 
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Posted 26 March 2014 - 12:07 PM

I agree with Nicole :)

 

It is extremely frustrating, but the endoscopic biopsy is not perfect and only two samples from the small intestine is not optimum.  It is done now, so remain gluten free to monitor symptoms.  Repeat your antibody tests at six months -- if they have come down with the removal of gluten it is celiac and not ncgs.

 

Gene testing is fine to have done, but is not definitive.  On the plus side - if you are DQ2 or DQ8 your doctor will likely agree to call this Celiac Disease.

 

Hang in there :)


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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 :)


#42 rcheltrvel

 
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Posted 26 March 2014 - 12:20 PM

Hi Lisa,

 

How do you know from what I wrote that there were only two samples taken from my small intestines? When I was going in for the procedure, right before I went under, I asked the GI if he could please make sure he takes 6-8 samples. He says, don't worry, I take plenty. When I first read the report today, I also thought he only took 2. But then my mom (who also read the report) pointed out that under each of the 2 containers, it says "multiple". So could that mean he took more then 2 samples?

 

My uncle is a big pathologist in NYC, I have a call into him to help me understand what he actually took, not sure if it will help.

 

So if I stay gluten free for 6 months and my level comes down, that would prove Celiacs?

 

Thanks, Rachel


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#43 GottaSki

 
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Posted 26 March 2014 - 03:06 PM

hmmm, I read it to be #1 and #2 were single samples

 

Was the report generated by the pathology lab or your doctor's office?  I would definitely have your uncle look at it -- every lab words things differently and it's hard without seeing the report to help more.

 

I think positive celiac antibodies with symptom resolution after removing gluten is enough to diagnose Celiac Disease and your antibody levels falling would add weight to the diagnosis, but what I think doesn't really matter -- you'll have to decide if you have enough pieces of the puzzle and weather or not you need an official diagnosis.  If so, the gene test may help with this.


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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 :)


#44 anand

 
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Posted 27 March 2014 - 10:00 AM

Hi,
U may want to discuss to option of capsule endoscopy... Will scan the entire small and large intestine... And much easier than a colonoscopy...
http://en.wikipedia....psule_endoscopy
Best wishes
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#45 Celiacandme

 
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Posted 27 March 2014 - 11:34 AM

Just read this thread and it sounds like you've been through so much. I don't want to comment to much on your report findings because I consider myself to be still learning about all this but like the others mentioned above it seems like you are gluten intolerant regardless of the outcome. I'd be curious to see how your numbers look after 3-6 months completely gluten free. Now that you can fully follow a gluten-free menu, I hope you start feeling better soon. And I'm sure you've done it already but don't forget to make sure any medications/supplements you take are gluten free! Best wishes!

~Julie


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