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Celiac diagnosis & the need for biopsy with no/minimal symptoms
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Celiac diagnosis & the need for biopsy with no/minimal symptoms

I was recently diagnosed with Celiac disease through a blood test. I've researched on my own and been told that the blood test markers for these particular antibodies are very specific to Celiac disease and not often a false positive.

Also, I realize that the endoscopy + biopsy are considered the "gold standard", however, it is my understanding that this biopsy merely confirms "damage" to the vili, rather than confirms whether or not I have the disease. So given that, I have no idea what in the wold "gold standard" is supposed to mean.

That said, I'm wondering if I even need the endoscopy and biopsy at all. It's rather expensive with my current insurance deductible, and if it's not going to confirm anything I don't already know, then I feel like it may be a waste of time and money. I have absolutely no symptoms, so it would seem logical that I simply bypass the biopsy and go straight to my lifelong, gluten-free diet.

It's my thinking that regardless of the outcome of the biopsy, the gluten-free diet is needed, since I've been told by two physicians that I have Celiac disease. A GI doctor told me yesterday that I'll need to go on the diet anyways whether I have the biopsy or not, so I don't see how the biopsy confirms anything. Maybe the lack of symptoms means my vili are fine...and if they aren't, they'll heal anyways after a few years of being on my new diet.

My Celiac extended blood panel results:
http://dl.dropbox.com/u/2121989/Screenshots/celiac-results.png

I had another, separate blood test yesterday to assess anemia, and all levels tested (not shown here) were normal, so I believe I'm good there.

My wife has been contesting everything I've heard from doctors so far (denial?...not sure), and I'm looking for clarification to these specific questions so that I may show her something in writing, rather than what I'm trying to convey verbally from a physician.
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Avatar_f_tn
Your blood results show both what could be considered a gluten sensitivity ('allergy') and IgA results that could definitely indicate celiac disease. You may want to consider doing the gene (allele) test rather than doing the biopsy. Check out enterolab.com for details.

With the type of results you've gotten, the wisest thing to do would be to immediately start a gluten-free diet and remain on it. Far too many adults are now showing up with a form of 'silent' or adult-onset gluten issues. For those who continue to consume gluten the results can often be very problematic as they age. The typical GI related issues aren't typically seen. More severe symptoms seem to be found and can include cognitive changes and other neurological problems.

I believe there are some very good articles that can be found on Medscape.com about this issue. Also try the Science News section of ScienceDaily.

Congratulate your doc on a job well done. Most docs don't even seem to know that adults can 'suddenly' pop up with gluten issues.
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Avatar_m_tn
There's some controversy in the celiac community about the value of the endoscopy w/ biospy for diagnosis. Recent research shows a very high correlation between blood work results and endoscopic findings in people with celiac, casting doubt on the diagnostic value of endoscopy.

Further, endoscopy can be hit or miss. Sometimes the damage is so extensive that the duodenum appears flattened (nice picture of this on the Wikipedia page about celiac), but often the gross appearance of the duodenum is normal. The biopsy can be normal too, if unaffected tissue is sampled. The skill of the pathologist reading the biopsy can come into play, too.

Some people with celiac undergo multiple biopsies before getting a positive result. And if you stop eating gluten, the affected area(s) of your intestines will start to heal, making a biopsy more challenging.

I skipped the biopsy. Too expensive, though in my case celiac is the least of my problems (or medical expenses).

As for family, get used to denial/indifference. It'll take time for them to come around, to understand that you have an autoimmune disorder that requires lifelong attention. Much of my family still thinks I'm making up my autoimmune disorders. Others came around quickly, or with a little prodding.

On the positive side, the treatment for celiac is completely safe and risk-free (i.e.: no meds, surgery, etc.). Just avoid gluten.
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Avatar_f_tn
Your blood results show both what could be considered a gluten sensitivity ('allergy') and IgA results that could definitely indicate celiac disease. You may want to consider doing the gene (allele) test rather than doing the biopsy. Check out enterolab.com for details.

With the type of results you've gotten, the wisest thing to do would be to immediately start a gluten-free diet and remain on it. Far too many adults are now showing up with a form of 'silent' or adult-onset gluten issues. For those who continue to consume gluten the results can often be very problematic as they age. The typical GI related issues aren't typically seen. More severe symptoms seem to be found and can include cognitive changes and other neurological problems.

I believe there are some very good articles that can be found on Medscape.com about this issue. Also try the Science News section of ScienceDaily.

Congratulate your doc on a job well done. Most docs don't even seem to know that adults can 'suddenly' pop up with gluten issues.
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