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

Enterolab Results: Positive


kellysensei

Recommended Posts

kellysensei Apprentice

So I got my gluten sensitivity stool test results back today:

 

Fecal Anti-gliadin IgA      36 Units   (Normal Range is less than 10 Units)

 

According to them, this means I need to avoid gluten. I'm not really surprised at the results. But they don't distinguish between gluten sensitivity and full-blown Celiac disease. Do stool test numbers correspond to blood test numbers?

 

I guess my next step is to have my GI doctor redo the Celiac blood test. I had a blood test done in November (and it was negative), but it wasn't valid because I'd been off gluten for several weeks. Now I've been eating gluten again for five weeks. I think I need to go eight weeks for a valid blood test, right? My birthday is in about three weeks, so I guess I'll eat a whole bunch of birthday cake and go out with a bang. LOL

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kareng Grand Master

So I got my gluten sensitivity stool test results back today:

 

Fecal Anti-gliadin IgA      36 Units   (Normal Range is less than 10 Units)

 

According to them, this means I need to avoid gluten. I'm not really surprised at the results. But they don't distinguish between gluten sensitivity and full-blown Celiac disease. Do stool test numbers correspond to blood test numbers?

 

I guess my next step is to have my GI doctor redo the Celiac blood test. I had a blood test done in November (and it was negative), but it wasn't valid because I'd been off gluten for several weeks. Now I've been eating gluten again for five weeks. I think I need to go eight weeks for a valid blood test, right? My birthday is in about three weeks, so I guess I'll eat a whole bunch of birthday cake and go out with a bang. LOL

This is a reliable place to get medical info:

Open Original Shared Link

For example :

Open Original Shared Link

"What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy."

Open Original Shared Link

"We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.

We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough)."

Link to comment
Share on other sites
ravenwoodglass Mentor

How did your body respond to being gluten free and how has it responded to the challenge? IMHO that is the most important thing to which you should be paying attention. While it can be helpful to get a firm diagnosis if the diet is helping you should stick with it after all your testing is finished no matter what the results.

Link to comment
Share on other sites
kellysensei Apprentice

Well, I was off gluten for seven weeks. Since I've been back on gluten, I've noticed that I'm much more tired, I use the bathroom more, and the vision in my left eye is worse. So I do plan to avoid gluten after the next blood test, but I still hope that I don't have Celiac, of course, so I don't have to freak out if I eat something with a little bit of soy sauce in it (for example). Of course, being gluten-free could really mess up dreams of moving abroad in a few years. :-(

Link to comment
Share on other sites
RollingAlong Explorer

There are celiacs all over the world; don't give up on your dreams! 

 

Enterolab offers a TTG test that may be a bit more informative as it looks at autoimmune activity.  Read this celiac.com blog post:

https://www.celiac.com/gluten-free/blog/856/entry-1546-enterolab-a-scientists-viewpoint/

 

If I remember correctly, Dr Fine did submit a paper for publication a few years ago and I don't think it was ever published. 

 

It is possible to have all the blood work be negative, the tests just aren't perfect. 

 

My spouse has never had any positive blood work. He did have a positive TTG test from enterolab and he did work with a GI doc to be sure it wasn't something else. He did a formal gluten challenge and became very ill over the 3 months. The doc told me, right after the endoscopy, that he was sure my husband had celiac.  The biopsy did come back negative, but at the follow up visit, the Gi doc said, based on what he saw, that he supported my husband's decision to not eat gluten. So, no formal diagnosis and can't use blood work to track his progress with the diet. 

 

However, he's had excellent response to the diet, the anemia is gone, etc. He also eliminated casein, so we confounded our variables. He did have multiple positive blood tests for casein. 

 

He retests with Enterolab with the TTG test annually and so far (5 years) has never gotten into the normal range, although his #'s have dropped.  

Link to comment
Share on other sites
kareng Grand Master

There are celiacs all over the world; don't give up on your dreams! 

 

Enterolab offers a TTG test that may be a bit more informative as it looks at autoimmune activity.  Read this celiac.com blog post:

https://www.celiac.com/gluten-free/blog/856/entry-1546-enterolab-a-scientists-viewpoint/

 

If I remember correctly, Dr Fine did submit a paper for publication a few years ago and I don't think it was ever published. 

 

It is possible to have all the blood work be negative, the tests just aren't perfect. 

 

My spouse has never had any positive blood work. He did have a positive TTG test from enterolab and he did work with a GI doc to be sure it wasn't something else. He did a formal gluten challenge and became very ill over the 3 months. The doc told me, right after the endoscopy, that he was sure my husband had celiac.  The biopsy did come back negative, but at the follow up visit, the Gi doc said, based on what he saw, that he supported my husband's decision to not eat gluten. So, no formal diagnosis and can't use blood work to track his progress with the diet. 

 

However, he's had excellent response to the diet, the anemia is gone, etc. He also eliminated casein, so we confounded our variables. He did have multiple positive blood tests for casein. 

 

He retests with Enterolab with the TTG test annually and so far (5 years) has never gotten into the normal range, although his #'s have dropped.

The blog post you link to explains why Enterolabs are not a good choice for tests.

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
      121,063
    • Most Online (within 30 mins)
      7,748

    Nacina
    Newest Member
    Nacina
    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...