Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Little Confused Re Lab Results

carteem

Recommended Posts

carteem Rookie
carteem
Posted

Hello. I am new to all of this, and I am just wondering if there is any feedback re my lab results.

I have quite a few of family members who are in the medical field. They really pushed the "false positives" of the lab results. From everyhing I've read, there seems to be a greater chance of "false negatives".

Here are the results:

Tissue Transglut IGA- <1.2 Reference Range- <4.0 Negative

Reticulin ABS-Negative

Endomysial IGA- Negative

Deamidated Giladin IGG- <10 Reference Range- <20 Negative

Deamidated Giladin IGA- *88.9 Refernence Range - <20 Negative >30 positive

I have been symptomatic for a good 2 years. I was in a weight loss challenge and was very meticulous with my diet. I ahd pretty much cut out all breads, alcohol, etc... I lost 50lbs very quickly and felt FANTASTIC! When it was over I added in healthy grains (whole wheat pastas, breads, etc..) About a month later I felt like I was hit by a train! Joint and muscle aches, fatigue, pitting edema, weight gain. My doctor ran hormones and my progesterone was very low/undetectable so I have been on Progesterone cream. Shortly after, I started with GI symptoms and had my gallbladder out (no stones but it was in bad shape) . My GI symptoms improved but then lately I had all of the other symptoms return with very noticable joint pain/stiffness in wrist and knee and feet. Now I am getting bombarded with GI symptoms (heartburn, bloating, gas, belching, diarrhea alt with constipation, etc...)

I was told that the DGA is very specific and I pretty much am celiac. I do have a GI consult setup but of course its another 5 weeks before the consult. :( I will continue the same diet, but I have to admit my family members are making me second guess myself.

Also, does anyone know if the DGA number is significant to the amnt of gut damage? I wasn't able to find "average" high postives vs low positives etc...

I appreciate your feedback! Thanks!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hello, and Welcome.

Yes, the DGP is a new test and is very specific for celiac. The numbers in your testing score do not necessarily reflect the degree of intestinal damage. Some people with quite low numbers have severe damage, and vice versa. Yes, do keep eating gluten until your biopsy even though it will be painful. And do NOT listen to your family -- you have it quite right that false positives are very rare, and false negatives run about 20%. You only need be positive on one of the tests and the DGP is an accurate one.

Link to comment
Share on other sites
carteem Rookie
carteem
  • Author
Posted

Hello, and Welcome.

Yes, the DGP is a new test and is very specific for celiac. The numbers in your testing score do not necessarily reflect the degree of intestinal damage. Some people with quite low numbers have severe damage, and vice versa. Yes, do keep eating gluten until your biopsy even though it will be painful. And do NOT listen to your family -- you have it quite right that false positives are very rare, and false negatives run about 20%. You only need be positive on one of the tests and the DGP is an accurate one.

Thank you for the information! I just needed a little clarification and some reassurance with my thoughts. I'm sure many can relate when I say that I almost started to feel like I was a hypochrondriac. Now that I look back, I see so many suttle signs of gluten problems even through grade school. Silly things really make sense now. (I havent bought gram crackers or wheat thins for years, as I never liked how groggy I felt after eating them...but never knew why.)

I have started to prepare for my gluten free adventure even though my consult is weeks off. (I am married with 3 young children and I never even thought of the effects of cross contamination until I found this website.)

I am really thankful to learn so much here!

Link to comment
Share on other sites
Takala Enthusiast
Takala
Posted

Some of your "medical field" family members may darn well know that a celiac has a much higher probability of having celiac or gluten intolerant relatives, and they may be doing the ostrich thing as a defensive mechanism, :blink: because of their love of cupcakes or beer or whatever - and a few matching symptoms. <_<

Link to comment
Share on other sites
beachbirdie Contributor
beachbirdie
Posted

Hello. I am new to all of this, and I am just wondering if there is any feedback re my lab results.

I have quite a few of family members who are in the medical field. They really pushed the "false positives" of the lab results.

From everyhing I've read, there seems to be a greater chance of "false negatives".

With all due respect to their education, your "medical field" family members should know that as you found, false positives almost never occur, it is false negatives that are quite a bit more common. Especially with the DGP, they are very sensitive and very specific.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,226
    • Most Online (within 30 mins)
      7,748
    NYKaren
    Newest Member
    NYKaren
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...