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Biopsy Inconclusive

inconclusive blood test malabsorbtion genetic intolerance celiac ttg iga

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11 replies to this topic

#1 shelly40

 
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Posted 20 November 2012 - 02:20 PM

Hi all. I found this forum while trying to search for the meaning of my test results. If anyone has been in this situation, maybe you can help shed light on it for me.

My celiac blood test was a weak positive (8). I had a colonoscopy and endoscopy last Friday. Afterward, the dr. came in and told me she found "Duodenal erosion and scalloped mucosa in the duodenum" and was 99% sure the biopsy would reveal celiac.

I had my follow-up appt. today. The biopsy was inconclusive. She said the next step was genetic testing. As I have celiac in my family, chances are the genetic test will be positive and still not tell me anything.

Any words of advice or wisdom?

TIA!!
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#2 mushroom

 
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Posted 20 November 2012 - 03:27 PM

Hello, and welcome.

Can you tell us which blood test(s) you had, and what the lab ranges were for the results? Also, if you could get a copy of the biopsy report too, it would be helpful. It might be helpful to get a second opinion on the reading of the slides.
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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

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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

#3 Lisa

 
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Posted 20 November 2012 - 03:48 PM

My celiac blood test was a weak positive (8). I had a colonoscopy and endoscopy last Friday. Afterward, the dr. came in and told me she found "Duodenal erosion and scalloped mucosa in the duodenum" and was 99% sure the biopsy would reveal celiac.

TIA!!


Hello and Welcome!

In addition to what Mushroom offered, a positive - full blood panel is conclusive. And scalloping and erosion, is also a large piece of the puzzle and consistant with Celiac Disease. And, add your family diagnostic history.

Were you consuming gluten at the time of your blood test? The biopsy could have missed affected areas. How many samples did they take? It's possible that you were tested before major damage could occur.

A gene test will tell you that you "may" be predisposed to Celiac. It's not conclusive to just Celiac Disease. Only thirty percent of the people who carry the genes associated with Celiac, will go on to develop the disease. But, again, in your case....it's another piece of the puzzle.

In my opinion, a positive dietary response would be the defining criteria for your diagnosis.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 shelly40

 
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Posted 27 November 2012 - 08:12 AM

Thanks for the responses. I had the Tissue Transglut, IGA/IGG ABY initially. The results were:
My TTg IgA = 8
TTg IgA Reference Values
Negative < 4.0 U/mL
Weak Positive >= 4.0 and <=10.0 U/mL
Positive > 10.0 U/mL

My TTg IgG = 1.7
TTg IgG Reference Values
Negative < 6.0 U/mL
Weak Positive >= 6.0 and <=9.0 U/mL
Positive > 9.0 U/mL

I now have 2 new test results. They are:
My IGA value = 251
standard range =85 - 370

Celiac associated HLA-Q Typing
Celiac gene pairs present? Value = Yes

So I have a weak positive TTG IGA, an inconclusive biopsy, and a positive genetic test. I'm waiting for my dr. to tell me what this means. Do I have celiac?
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#5 shelly40

 
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Posted 27 November 2012 - 10:29 AM

Hi all! I'm new here.
I've received some mixed reports from my dr. and have been trying to make sense of them. I thought I should share what I've learned and see if anyone has any additonal insight for me.

History:
My first symptoms were fatigue and swelling/pain/numbness in my fingers, hands, wrists, and feet. After many doctor visits with no helpful answers, I was given a vitamin D test. It was a 7 (normal range ends at 30). I was put on a hefty prescription. A year later, I fell and broke my wrist. I had another vitamin D test which again came back sevely low. I had a dexascan and found out I was losing bone density much too quickly for my 40 years. Finally, my dr. sent me to a gastroenterologist to look into the malabsorbtion. I didn't know I was having tummy trouble. I thought my bathroom routine was 'normal'. Turns out, most people don't have loose stool every day.

My initail TTG IGA test came back as a weak positive. I had an endoscopy. The dr told me she could see damage and was 99% sure it would come back positive for celiac. It didn't. It was inconclusive. The villi was not damaged enough to confirm a diagnosis. My dr. ordered more tests and found I carry the celiac gene. I will list my test results below.

My doctor does not want to diagnose me with celiac until I have clear results. I'm frustrated!! Does it matter for my medical record if I'm officially diagnosed with celiac????

During my research, I came accross a white paper that helped me understand. It can be found at http://parkridgemult...-DISEASEprm.pdf

"First, the doctor has to think of gluten intolerance as a possible explanation for your health problems. Next, the doctor has to understand that the current gold standard blood test for making the diagnosis of celiac disease requires significant intestinal damage – damage that has yet to occur in most gluten intolerant people.

In cases of early gluten intolerance, the matter of its presence or absence cannot be settled without a systematic review of your medical history, a celiac genotype, and a look at other markers of a gluten-mediated illness process. These include:
1. Markers of malabsorption.
Iron, protein, vitamin D, vitamin B12, magnesium and other mineral levels.
2. Markers of a leaky gut.
Excessive antibody or lymphocyte responses to food antigens, signs of parasitic infection, yeast overgrowth or imbalanced bacterial populations in the gut, lactulose and mannitol levels in the urine following ingestion, and other tests soon to be available on the consumer market." ©2010 Keith Berndtson, MD 5


As I know I have malabsorbtion and excessive antibodies, I'm just going to assume I at least have gluten intolerance and start my gluten free diet.

I had the Tissue Transglut, IGA/IGG ABY initially. The results were:
My TTg IgA = 8
TTg IgA Reference Values
Negative < 4.0 U/mL
Weak Positive >= 4.0 and <=10.0 U/mL
Positive > 10.0 U/mL

My TTg IgG = 1.7
TTg IgG Reference Values
Negative < 6.0 U/mL
Weak Positive >= 6.0 and <=9.0 U/mL
Positive > 9.0 U/mL

I now have 2 new test results. They are:
My IGA value = 251
standard range =85 - 370

Celiac associated HLA-Q Typing
Celiac gene pairs present? Value = Yes

So I have a weak positive TTG IGA, an inconclusive biopsy, and a positive genetic test. Do I have celiac? Should I care what the official diagnosis is?
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#6 guest134

 
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Posted 27 November 2012 - 10:37 AM

Well you are falling into the place where celiac isn't always a slam dunk, unfortunately this happens often, I am going through the same thing myself.

You have the genes, and the genes have been triggered in other family members, the weak positive TTG does not mean much as of right now, the University of Chicago states it can be a low positive in family members without the disease. Do you have symptoms? In my opinion all this means is that you are at high risk of developing it in the future but that you don't currently have it (then again, I never looked at your pathology report).

How would you feel about going gluten free either way? I know there are two types of people in a case like this 1- Someone who does not want to wait and take the chance of horrible symptoms, intestinal damage, and the possibility of triggering other autoimmune and 2- Someone who will take the wait and see approach, yearly testing as part of the normal physical should catch any significant changes before it causes too much damage. You may never develop it, or you may. Really it is a gamble, and pretty much everyone on this forum will tell you not to take such a gamble because it turned out negative for them, however there are many people with the high risk gene factors that don't develop it. Please discuss all these options with your doctor and make the best decision for YOU.
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#7 kareng

 
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Posted 27 November 2012 - 10:43 AM

Hi all! I'm new here.
I've received some mixed reports from my dr. and have been trying to make sense of them. I thought I should share what I've learned and see if anyone has any additonal insight for me.



I merged this post with this thread so all the info is in one place and people don't have to go back and forth.
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LTES

 
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#8 GottaSki

 
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Posted 27 November 2012 - 11:42 AM

Welcome Shelly!

Positive blood work.
Damage to the small intestine consistant with Celiac Disease.
Family history with genes confirmed.

I don't know what your doctor is waiting for - you most certainly do not need their blessing to begin living gluten-free. Remove all gluten and note symptom improvement.

Consider taking your dietary results along with all your medical test results to a doctor that specializes in Celiac Disease if you need an "official diagnosis" - also would be wise to find this doctor for follow up care, although your primary can order follow up celiac and nutrient blood work as well.

Oh - make sure you request written copies of the endo and patholgy reports too.


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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 :)


#9 shelly40

 
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Posted 27 November 2012 - 01:27 PM

I have an update. My dr. just called. Another test result came in today. I have officially been diagnosed with celiac. I probably shouldn't be happy about it, because I know going completely gluten free will not be easy. However, I cannot wait to feel better. I can't wait to have some energy and not to hurt in my hands and feet all the time.

The last test was:
deaminated gliadin
IGA - my result was 60.6 (negative is >20)
IGG - my result was 89.9 (negative is >20)

This test, along with the visible scalloping in my bowel, the positive TTG test and the positive genetic test make it pretty conclusive. The dr. said the biopsy being inconclusive was probably because I'm still at the begining stage of damage. I will cut out gluten immediately and see a nutritionist soon.

Thank you to all who replied. This has been a frustrating ride. I'm going to go read on the gluten free forum now. :)
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#10 mushroom

 
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Posted 27 November 2012 - 02:13 PM

I am so glad that you have received a definitive result and diagnosis (even if it isn't necessarily one we want, it's good to know). The DGP was the one I was looking for initially :) Welcome to the club and yes, read everything you can.
  • 0
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

#11 guest134

 
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Posted 27 November 2012 - 04:32 PM

If you were to have any disease on this planet I would say celiac is the one to have, no annoying medication and the diet is natural and healthy, heck a lot of people would live much healthier lives on the diet. Be happy you caught it early unlike some poor members on this forum who now have several other autoimmune diseases because of missed diagnosis for years. I was frightened of diagnosis myself at first but after all this research I have seen how easily managed and healthy the gluten free diet is, although I am not diagnosed as of yet I can truly say not a single care would be given come a positive biopsy this December.

I already have a goal of maintaining an 8 percent body fat year round (I am into bodybuilding) if I get diagnosed, the gluten free diet is so healthy so it makes looking great easy. Make a positive of a negative! You have an awesome support group here and we are all here for you if you need anything.
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#12 GottaSki

 
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Posted 27 November 2012 - 08:03 PM

Great news Shelly - not that you have Celiac - just that you have a serious health condition that can be managed by the food you choose.

Read as much as you can and ask as many questions as needed - it really does make a very tough transition progress much more quickly.

Thanks for letting us know the update :)
  • 0

-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 :)






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