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

Negative Bloodwork


Slr38

Recommended Posts

Slr38 Apprentice

So after almost two weeks of waiting I finally got my results back.

Turns out they only did the screening for TTG Iga!

Here is what the report says:

Tissue Transgluaminase Iga 1.1 kU/L Ref. Range 0.0 - 20.0

Immunoglobulin A 1.78 g/L Ref. Range 0.60 - 4.20

I saw a Resident as my family doctor was away. He said I did not have Celiac Disease. I asked him if I was not supposed to have more tests done and he said no, this was the only one needed. I know there are more tests to be done but if he says no, what do I do now? I think the lab only runs the other tests if the TTG Iga is higher.

The test screening info section on this site is down for maintenance so I could not look anything up.

Thanks in advance for your input.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Oh wow. I fully expected to to have a positive test; I'm really surprised that your ttg Iga didn't come back positive after that positive Biocard ttg Iga home test you did a couple of weeks ago. :huh: I don't know how one test can be positive one week and then the next week, when it's done by a different lab, it's negative...Unless celiac can flare like the other autoimmune diseases and you've entered a time when gluten isn't bothering your body as much...

Did the resident have any opinion about the Biocard test and the the discrepency beteen the two results? Now you're stuck with figuring out which test to believe. :( No fun.

When my tests were done by CLS, they ran the EMA as well, but my ttg Iga result was rather high... I have no idea if that lab runs ttg IgG tests or the deaminated gliadin peptide tests (DGP IgG and DPG IgA). It could be worth checking into.

(Hugs) to you. I know how much you were hoping for a clear result and not more confusion. I do hope you'll still consider going gluten-free for a few months (once you are sure all of your testing is complete) to see if that helps you. With that positive home test, I think celiac could be a factor in the health issues you've had and a trial of a few months might help.

I wish I could be of more help. I imagine you must be pretty frustrated, so I wish I knew more about the testing and why your results came out this way. Pm me if you need to vent. Best wishes.

Link to comment
Share on other sites
Slr38 Apprentice

I typed a long reply but it does not seem to be here?!

So, to make a long story short;

I emailed 2gpharmas to inquire about my results. They have now sent my questions to the manufacturer. I will let you know what they say.

The resident did not have much to say and had never heard of the home test. He only said that the test I had was all that was needed.

I too thought I would have a positive result. Very frustrating indeed!

I am not sure what my next step is. I am considering visiting a Naturopathic dr. and see what she has to stay. The initial visit is an hour so we should be able to cover a lot.

My quest continues...

Link to comment
Share on other sites
Slr38 Apprentice

Hello again,

I just looked up the Celiac tests on the lab website and this is what it says:

"Initial test of Celiac Disease Screen includes TTG and IgA. Additional reflexive assays will be ordered as required and may include Anti-Endomysial Antibodies (AENDAB) and TTG IgG. "

I guess since my TTG Iga was normal they did not go ahead with the other tests. Does this make sense? I thought if you tested negative for one test you could still test positive for other tests. Am I wrong?

Thanks again.

Link to comment
Share on other sites
nvsmom Community Regular

I curious what 2G Pharma will say. I would assume they'll stand by their product. :huh: I know it worked for me... you would think it would only show the line when it's reacting with the ttg IgA...

A homeopath or naturopath might be a good idea. They can work wonders for people. I have one good friend who had an autoimmune nerve problem on her face which caused her eye to slouch shut. She was on prednisone for decades and it barely helped, and then she started with a homeopath who started her on the right remedies and completely cleaned up her diet (good foods, very limited additives, and lots of organics), and it's been in remission for years. It she feels it acting up, she takes her remedy and tweaks her diet... As we know , diet can really affect your health.

And yes, you are right. You can test positive for some tests and negative for others. As far as I know, EMA is considered a good test for celiacs because it indicates ongoing significant damage is being down to the small intestine; ttg iga shows damage has been done to the small intestine and can be caused by milk or casein allergies or severe gastrointestinal illnesses. Together those two are pretty definitive. I don't know about the DGP tests or IgG because I didn't have them done, nor were they offered to me; I didn't look them up. I would request those tests but I have no idea if CLS does them. You might want to check those Enterolabs mail order tests if you can't get them here.

It is possible that you are gluten intolerant and don't have the intestinal damage happening. All the same symptoms like nuerological, intestinal and hair loss can occur in that group too. These symptoms are not just a result of gut damage or of nutrient malabsorption. For example, I am a celiac, but my nutrient and vitamin levels were almost all perfect but I still had thin hair and migraines (and other symptoms).

What my ramblings mean is that your diet could be causing the problems, but you may not end up being a diagnosable celiac. Tweaking your diet, for a few months at a time so you can be sure of results, may be a good next step when you are sure you are not testing anymore.

(hugs) to you. I hope that someone else can offer you good advice. Hang in there.

Link to comment
Share on other sites

Archived

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

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

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    2. - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

    3. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,062
    • Most Online (within 30 mins)
      7,748

    Sherry Glaser
    Newest Member
    Sherry Glaser
    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

    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...