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JenAnderson

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JenAnderson Rookie

What is Enterolab and why does it seem like that is the gold standard in testing? What do they do when they test? I have taken a blood test that came back inconclusive and had a "Biopsy", but the gastro that I saw said that he didn't see any scarring. I've had an appendectomy a few months ago and the surgeon said that I needed to be retested because from the state of my appendix, I could have been having problems with that all along. Can anyone help me? I have been gluten-free since Jan 04 and I have no idea what to do with all this new info.


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cornbread Explorer

Go to their web site and read read read - lots of great info there. :)

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tiffjake Enthusiast

I had testing done there (EnteroLab) because I didn't want to go through my doc. After doing several tests (Lame Advertisement, EnteroLab, and gluten free diet and then challenge) I went to my doc for the blood tests. I didn't want to get the discouraging comments that I have seen on here that so many people get from non-believing docs. That was my experience. Good luck! I hope you find what you are looking for!

mmaccartney Explorer

the "gold standard" is positive serology with positive intestinal biopsy. These methods are extermely old, and as we celiacs know, they are not that accurate unless your disease is progressed!

Enterolab is appealing to many as 1) it is non invasive, 2) it does NOT require you to ingest gluten for testing purposes.

The issues are that the testing is not standardized nor has it been put through a peer review. Many doctors don't see them as legitimate.

I made the choice to use them. My serology was funny, my biopsy negative. But then my disease was only active for about 1.5 yrs. If I continued on and got tested after a year or two, the results surely would have been different. So, I ended up going with Enterolab (my ins actually paid!!) and I got the results I knew I would get.

JenAnderson Rookie

Well I've called my insurance company and since it's not a military physician or facility, the military won't cover it (Go Figure) Ah well.

mmaccartney Explorer

Bummer! I know nothing about military insurance. I would ask them if the military provides this type of testing, and if a military doctor ordered it, would it still be covered??? I woul expect that if a doctor in their plan ordered the test, it wouldn't matter what lab it came from!

My insurance company told me that they would *not* cover the testing. They wouldn't consider it "medically necesary" unless a doctor ordered it.

I wanted the testing, so I put up the $390 to have it done. Just for kicks I got a claim form and sent it to my insurance company. Surprise! they paid it! I am still shocked......

I am having my kids tested. Just to be safe I'm trying to ge their pediatrician to "order" the tests so that if the ins denies it I can appeal and get payment...

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    • trents
      Thanks for following up with us on the results. This might be helpful to you now:  
    • Kiwifruit
      Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!
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      I agree that the gastritis may go away after you've been on a gluten-free diet for a while. If you are concerned, it might make sense for you to do a follow up biopsy after  a year or so on a gluten-free diet. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or endoscopy would be challenging, as it requires consuming gluten for several weeks to months, which could worsen your symptoms and disrupt your daily life. Gene testing (HLA-DQ2 and HLA-DQ8) through a lab like EnteroLab could be a helpful first step. While these genes are present in nearly all celiac patients, having them doesn’t confirm celiac disease—it only indicates genetic susceptibility. If you don’t have these genes, celiac disease is highly unlikely, which could provide some peace of mind. However, if you do have the genes, it doesn’t confirm celiac disease but suggests further testing might be warranted if you’re willing to undergo a gluten challenge. Another option is to discuss with your doctor whether a follow-up endoscopy or other non-invasive tests (like stool tests for gluten antibodies) could provide insights without requiring a gluten challenge. While a formal celiac diagnosis can be important for ensuring strict dietary adherence, access to gluten-free options in hospitals, and monitoring for complications, it’s also worth weighing the risks and benefits of reintroducing gluten. If you’re already strictly gluten-free and managing your symptoms well, the urgency of a formal diagnosis may depend on your personal health goals and concerns. Consulting a gastroenterologist familiar with celiac disease and Microscopic Colitis can help guide your decision.
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      Steatorrhea (oily or fatty stools) can indeed be a symptom of malabsorption, which is often linked to gluten exposure in individuals with celiac disease. While it’s possible that a single glutening event, like cross-contamination at a restaurant, could trigger temporary steatorrhea, it’s also worth considering whether there’s a more chronic source of gluten exposure, such as in medications or ongoing dietary mistakes. Since you’ve been less careful recently and experienced this symptom after eating out, it’s plausible that the fries or other cross-contaminated foods could be the culprit. However, if the steatorrhea persists, it might indicate ongoing gluten exposure or another underlying issue, such as pancreatic insufficiency or bile acid malabsorption. Until you can see a GI doctor, it might help to strictly avoid any potential sources of gluten, including cross-contamination, and monitor your symptoms. If the issue continues, it’s important to investigate further, as persistent steatorrhea can lead to nutrient deficiencies. In the meantime, keeping a detailed food and symptom diary could help identify patterns or triggers. Good luck finding a new GI doctor—hopefully, they can provide clarity soon!  
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