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 Our Content
    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


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)."

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.

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. :-(

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.  

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,348
    • Most Online (within 30 mins)
      7,748

    Dcac294
    Newest Member
    Dcac294
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Ginger38, Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.   I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.   We're supporting you through this difficult time.  
    • knitty kitty
      @Ginger38,  I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!   I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.   I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.   I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did not want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine. I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal.  Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet.  You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!
    • maryannlove
      Though trying to diligently eat gluten free, recent bloodwork was bad so searching for culprits.  Eat lot of (preferably mixed) nuts.  Most allergen labels say may be processed on equpment that also processes wheat, etc.  Finally found ONE kind (unsalted mixed) at BJ's.  Wessley (their store brand) that did not contain that warning.  Says in large letters "A GLUTEN FREE FOOD."  Well, all nuts are a gluten free FOOD!  Have been eating and now wonder if this is intentionally decieving.  So stopped eating until find culprit.  Nuts are so good for protein and fiber (especially if trying to not eat meat).  'Tis so frustrating.  Thanks to above, I'll look into Tierra Farms.   
    • somethinglikeolivia
      Fascinating! This was very helpful, thanks for sharing
    • maryannlove
      Despite being very diligent about eating gluten free, my recent bloodwork was bad.  So been on a mission to find the culprit(s).  During Covid my daughter found "certified gluten free" Yasso mint chocolate chip yogurt bars at Costco.  I was elated and have been eating them since.  When delving into possible culprits I discovered that the boxes with 12 bars at both Costco and BJ's no longer say "certified gluten free."  But the boxes with 4 bars at groceries and Target still say "certified gluten free."  Contacted the manufacturer and was told to go by what the box says.  So guess different machinery is used.  Was also told they were in the process of changing boxes.  Will be interesting to see what that brings.  
×
×
  • Create New...