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Biopsy Or Enterolab?


jessiU

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jessiU Newbie

I self-diagnosed myself with celiacs 5 months ago and since have been on the gluten-free diet and was pain free until just recently. I recently have had a huge flare up and have been in severe R sided pain for the past 4 weeks, which I had for 2 yrs before discovered celiacs. I went to the Dr. because I am in so much pain and can't get pain relief. The doc wants me to get a colonoscopy. I also mentioned about a biopsy and this will likely occur as well. Will the test results be valid since I have been gluten-free for a little while? Is it recommended to go through Enterolab? What tests are typically ordered, since they offer so many? Has anyone had their insurance company cover the costs, or is it all out of pocket? I am getting married in 3 weeks and then going on my honeymoon a week later and just want to feel good in time for the big events. Responses are greatly appreciated! Thanks.

Jessica


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gfpaperdoll Rookie

Check for appendicitis & gall bladder problems. Just get the Enerolab.com tests, the best & easiest route to go.

In the meantime go to a diet of plain meats, veggies, fruit, eggs, nuts, seafood. Do not eat any white potatoes, unless that you know for sure that you can handle them. Skip all grains except maybe for some white rice, I would not use brown rice as I & others have had a problem with brown rice. I would not be eating any of the gluten free goodies at this time. I would check into the Paleo diet for the short term as that is the safest diet. which is no grains, no dairy, no legumes (peanuts, beans, peas, lentils), no white potatoes.

if you are not having a gluten free wedding cake, then I would not be tasting it or you could likely be ill for the whole honeymoon.

I am sure others will chime in with some more advice. wishing you a speedy recovery & a happy wedding season!!!

Rachel--24 Collaborator

Hi,

Personally, I would skip Enterolab testing...unless you're interested in the gene tesing to see if you have a genetic predisposition for Celiac.

Otherwise Enterolab cannot diagnose Celiac Disease....the stool test will only tell you that you're sensitive to gluten which you've already been able to determine with a positive response to the diet. In other words it wont tell you anything that you dont already know.

I paid for all the enterolab testing....if I knew what I know now I would have just gotten the gene test.

I would pursue testing to make sure there arent any other issues going on.

In the meantime you might want to consider eliminating dairy for now. Hopefully you will be pain-free for your wedding and honeymoon! :)

AndreaB Contributor

I agree with Rachel. The gene testing is good if you want to know that, but you already know gluten is a problem.

It sounds like further testing needs to be done to see what is causing the pain you are having.

I would go one step further than Rachel and suggest gluten, dairy and soy free if you aren't already off the last two.

Most insurances don't cover Enterolab. I think some people have gotten part paid due to deductibles being met, but not the whole thing.

happygirl Collaborator

You could have something going on other than a gluten problem, so it may be helpful to be evaluated for other things.

If you have been gluten free, and truly have Celiac, your biopsy may not be positive. But, to me, the purpose of the endo/colonoscopy will be to look for other things besides Celiac.

Are you 100% gluten free?

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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