Negative Biopsy, Flattened Villi, Gallstones

[gin3153]

Hi. I'm new to the forum and to learning about Celiac.

I'm a 42 year old female, and have been diagnosed with IBS for years, Zelnorm did offer some relief until it was taken off market. Have had a blockage in colon in past, and constipation tends to be a way of life for me.

About a month ago severe pain under left rib appeared and pulsing/spastic colon on left. Pain did transfer some to right side but mainly was on left. When I was/am able to have a BM, afterwards it feels as if I have bruised ribs. Ended up going to ER because of pain and concern of blockage. Regular xray showed nothing. Made appointment with Gastro doc who scheduled some lab work, CT scan, and endoscopy. Prescribed Donatol and Miralax.

Lab work supposedly okay (not sure what all was checked, but I'm pretty sure Celiac stuff was not included at that time). Doc spoke with me when I awoke from endoscopy and mentioned Celiac, said that my duodenum was flat rather than velvety looking, so he took a biopsy. Called me later in day to say that results of CT scan says gallstones and I need to have gallbladder removed. I now have first appt with surgeon this Wed to see about taking care of Gallbladder.

Biopsy results turned out negative for celiac. I have no idea how many samples the doctor took. From what I've read here and other sites, a negative biopsy doesn't necessarily rule it out. I currently don't have a followup appointment with him scheduled, I'm guessing they hope that removing the gallbladder will take care of it all.

I'm wondering if it would be beneficial for me to go ahead and have the blood tests for celiac done just to make sure. I don't understand else what would cause the villi in my small intestine to be flattened if it is not celiac. I'd be willing to try the diet and go gluten free if it helped, but I'd like a confirmation because I have kids and grandkids that probably need tested if turned out that I have it.

The almost constant symptoms I still have are EXTREME bloating of upper stomach, constipation, gas, nausea, gas, loss of appetite, gas, fatique, out of breath walking short distances, gas, and pain mostly under left rib (feels like a fist up under there!). The Donatol has stopped the spastic pulsing of my colon.

I guess my question(s) are 1) what blood tests should I have done, 2) has anyone experienced gallstones causing similar problems , 3) is there anything else that causes the villi to go flat besides Celiac?

Thanks!

Gin

[Lisa]

Hello and Welcome!

Flattening of the villi is classic for Celiac. A gluten autoimmune response, resulting in blunted villi is generally a diagnosis of Celiac. On occassion, other food intolerances may cause this, but it is far seldom the reason.

Do not go gluten free until you have satisfied your testing. A gluten free diet may alter the accuracy of the testing.

Here is the panel you should request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Good luck.

[itchygirl]

There are many other things which might cause the villi to be flattened, but almost all of them are things the gastro should be following up on. You may wish to get your records and seek another opinion if the doctor has not scheduled any follow up after discovering this significant symptom. Also do make sure your surgeon is aware of this issue. He or she may wish to perform additional testing prior to your surgery.

Lets take this non-celiac cause of flattened villi for example, not something you want to wander around with....

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By all means have the bloodwork Momma Goose indicated. After reading that one I think I'd rather have celiac-eek!

[gin3153]

Thank you both for your input.

I am going to call the gastro doctor office today and set up a followup appointment to discuss all the results. As long as it takes to get into these doctors, I'll probably be healed from gallbladder surgery by the time an appointment rolls around.

I see the surgeon this Wednesday for the first time. I will give him the details of everything else that is going on besides just having gallstones and ask him to provide me with orders for the celiac blood work.

I'm on spring break this week (full-time student) and sure wish I could go far, far away and forget all of this. I've spent the past 5 years having back surgeries (2 laminectomies, 1 spinal fusion, hardware removal, spinal cord stimulator implant) and was looking forward to finally moving forward. Just really tired of being tired and its getting harder to fight the depression, but I'm working at it.

Thanks again for the advice!

[nora-n]

I think the doctor meant the duodenum looked flattened, by looking at it. This is a typical look of a celiac duodenum. There should be all those bulges in teh intestines. Nothing was said about the villi at this point, obviously.

My DD2 had this, and negative biopsies, and lots of symptoms that went away on gluten-free, so she had an official diagnosis.

They might easily miss the flattened villi patches ( as often the damage is patchy)

There are pictures online of how the intestines look when they are missing the bulges.

I hears of someone who paid for a video capsule, or was it camera endoscopy and this clearly showed the flattened villi (the pictures are really that good)

[gin3153]

Well, I called the Gastro office yesterday to request orders for the bloodwork be mailed to me, had to leave a message. One lady called back in the afternoon, asking if I realized that the biopsy came back negative and questioning why I wanted the blood test done. I stood firm and told her that I wanted the tests done just to make sure.

This morning another woman from the office called asking the same questions. I explained that I wanted to make sure, that I have children and grandchildren that have had stomach problems, and I just need to know for sure. She was much nicer and more understanding. She did say that the biopsy report stated that 6 samples were taken and all but one sample appeared normal, the one showed dysplasia. She is mailing me the orders for the blood tests.

Normally I would have backed down and let things go, but after reading many of the posts on this forum, I realize that mistakes can be made and I need to be active in trying to figure out what is causing my distress. Thanks for all the valuable insights!

Gin

[Lisa]

Gin,

Keep in mind that neither of the test are 100% accurate. The biopsy can be hit or miss and the blood test can vary greatly. Make sure that these are the test you need to have for the Celiac Panel:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If the blood test returns negative for Celiac, try the diet. The diet in itself is a diagnosis for Celiac Disease of gluten intolerance/allergy.

The bottom line is to feel better, whatever you may call it.

[gfpaperdoll]

well if 1 out of 6 samples was not normal - you have a villi problem. the damage can be very patchy. 6 samples is better than 1 but 12 samples is the norm made by the specialists - I think...

You can also get a gene test (& other testing) thru enterolab.com. they will test for the gluten intolerant genes in addition to the celiac genes.

If at all possible I would not get my gall bladder out until I was gluten free. That problem might clear up - mine did. Thank Goodness that I did not have insurance at the time or the docs would have yanked it out...