Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Biopsy Inconclusive
0

12 posts in this topic

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!!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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://parkridgemultimed.com/site/wp-content/uploads/2010/09/CELIAC-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?

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,588
    • Total Posts
      918,277
  • Topics

  • Posts

    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      I agree Katie, the gluten challenge isn't worthwhile for some people.  Regardless of your test results, I think you know the answer is not to eat gluten anymore.  I hope you recover quickly from the damage.
    • Last posted 2013 - Improving health
      I am glad you are feeling so much better!  Your posting will encourage others.  Thank you!
    • Last posted 2013 - Improving health
      When I first started this journey, roughly 11 yrs ago with symptoms, I had no clue. Eventually, having no luck with doctors (hypochondriac or psychosomatic), I googled my symptoms over and over looking for something... ANYTHING... that would give me a clue. Among other issues, my insides would not move, I was turning gray, felt like death, and had a persistent cough. I can't remember who but someone had posted on the forum and I found some of my symptoms. Eureka, I immediately began a gluten-free diet to see if it made any difference. Of course that was a journey, not realizing what products contained gluten. Long story shorter – first I went gluten-free, symptoms began to reappear, then it was soy (first organic was okay, then not), symptoms reappeared, took out corn, symptoms reappeared, then it was all grains. So the last couple of years I have been grain-free plus no sulphates. Actually, truth be told, my Celiac pharmacist gave me the recipe for health. I asked her if she liked a certain product. She answered, “I don't know, I have never tried it.” I asked her what she did use. She replied, “Nothing out of a box, a bag, or a bottle.” And that has pretty much been my life for the last couple of years. There is the odd product I try but it always has an after effect and I have to way the consequences against the enjoyment of it. I am one of those who react to 1 crumb in the butter, flour dust in the air, sulphates in anything, sometimes things that don't even seem like they would be a problem, like avocados and blueberries when I am contaminated. January 2016 I began this recitation. It is now May 5th, 2016 - Here I am 4 months later and I feel like screaming to anyone who will listen, “Things are improving!! My gut is healing!!” So what happened?? Someone suggested digestive enzymes. My insides were so compromised that I couldn't eat much besides fruit, veggies, and meat; all plain, all without being touched by people other than me. I could barely stand salt at times when I was compromised. Haven't been to a restaurant in years since I am not in a city that would have one to cater or understand this much of a problem. I started digestive enzymes but I read the label wrong and started with 5 first thing in the morning. Whatever... I began to notice improvements in what I could eat. Not anything different but just that I could eat without feeling ill or having my gut shut down. I stayed on those for a month and a half.. then I picked up a parasite from someone living in a very unclean apartment and visiting there and helping to clean. Well, that was a huge battle. I had to eat to discourage parasites. But in the process my insides began to heal dramatically. I was eating blackberries, drinking garlic keefir (which I couldn't have done 5 mths ago and gave me the first clue my insides had improved substantially), drinking oil of oregano or peppermint oil drops in a glasses of water, eating cabbage and green roughage. Drinking water with apple cider vinegar in it and Aloe Vera juice. After a couple of weeks my insides were a whole different story. I had a feeling of wellness that I hadn't had for years! I FELT like trying to eat something different. So I decided to try Gluten-free Rice Chex. Haven't had them in years.... and I am so happy! I can eat them!! (Not to say they are healthy, cause they are processed crap) but I didn't get sick and that was the amazing part. So now I am beginning to try a few things that would have set me back previously, I have made my own crème brulee because I have always been able to eat eggs. But the sugar was causing problems, but now it's okay. The issue I have now is that I want to try things too fast so I am having to exercise restraint. So here is it – parasites are very common, everyone has them however whether they cause problems depends on your immune system. Does it not makes sense that they would cause leaky gut? An over abundance in the gut would destroy gut tissue and take nutrients from a person and possibly put holes in the gut leading to food reactions? Digestive enzymes help to destroy the protective coating around parasites. Foods that discourage them or kill them are blackberries, garlic, cabbage, oil of oregano, peppermint oil, aloe vera juice, Braggs apple cider vinegar and more (google to find). I found medication didn't do anything so I turned to all the other. So this is how it is today. I don't suggest it is the answer to anyone else's problems but when I found this site, hidden in the posts was the beginning of the answers for me.  I may still be gluten, soy, corn intolerant but I am feeling so good now and I just thought I would tell someone.  I just wanted to share. Thanks for reading.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      Not to mention my hips and knees are killing me and I have really bad calf pains and horrible bloating after just 3 days of glutening. I don't think I could live like this for a whole week.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      I saw my gi today and he said to not worry about eating gluten. I have abdominal pain in the small intestine area and referred pain in my back, indicating pretty bad damage. So I'll just go without the gluten and do the genetic testing if needed.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,683
    • Most Online
      1,763

    Newest Member
    Rainbow60
    Joined