Possible Misdiagnosis?

[Lanahgreen]

I have been diagnosed as positive Celiac by a biopsy... stating "most likely active celiac".  I have not had bloodwork done yet.  Has anyone out there had a positive biopsy and negative blood tests?

[nvsmom]

It happens.  Some have a positive biopsy and negative blood tests, others have positive blood tests and a negative biopsy, others only have one positive blood test and the rest are negative.  It's even possible to have celiac disease without the genes for celiac disease, although that scenario is rare unlike having conflicting blood tests.

 

Most celiac blood tests have a 70-95% sensitivity, meaning that there is a 5-30% chance that a celiac will be missed by any given test. The more blood tests you have done, the more likely it is that at least one blood test will catch the celiac disease.  These are the tests to look for:

• tTG IgA and tTG IgG (tissue transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endomysial)
• total serum IgA - a control test
• AGA IgA and AGA IgG (anti-gliadin) - older tests

Make sure you are eating gluten in the 2-3 months before the test.

 

If you do end up with negative blood work, you should probably do the gluten-free diet unless the doctors have found some other reason for the intestinal damage.  You could always redo the biopsy after a year gluten-free to look for improvements. If your intestines have healed while gluten-free, then you have your answer.

 

There are others around here who know more about the biopsy and the conditions that could possibly caused a false negative in the minority of patients. Hopefully they can offer more wisdom than I.

 

Welcome to the board.  

[beth01]

Like Nicole stated if your tests are inconclusive but your biopsy revealed Celiac, do the gluten free diet.  Nothing good comes from being a celiac and eating gluten.  Even if you aren't having digestive symptoms it is wreaking havoc on not only your intestines but the rest of your body as well.  Untreated celiac isn't fun, just ask a bunch of us that have gone our whole lives with health problems, it's better to head off the problem before it can start.

[Lanahgreen]

I guess that's where I'm so confused.. I have zero diarrhea, no weight loss (I'm actually overweight for my height), no skin outbreaks, no migraines.  I went to the doc because EVERYTHING that touches my stomach makes it roll and bloat.  Water will do it.  So it's not just gluten products.  I'm hoping my blood work comes back negative as I live in a rural area and there are no Whole Foods markets, Publix, nothing.  I take care of my parents every night who eat old-school southern cooking ONLY.  This will be a huge adjustment.  I'm just very overwhelmed right now.

[nvsmom]

I never had diarrhea either, only C. And as an adult, I am usually normal weight to overweight. I was tall for a child, and I have no real nutritional deficiencies... I did not really fit the mold either.

 

Stomach aches at odd times came for me too. Sometimes there would be nothing, and at other times I cold barely stand up straight.. I used to carry a sweater with me to hold over my stomach when I went out because I never knew when I would bloat up and look like I was in my second trimester of pregnancy.

 

I mention my symptoms because you do have symptoms of celiac disease. They are not all classic celiac disease symptoms but it is still there.  

 

I found a list of other disorders that can cause villious atrophy besides celiac disease. Do any apply to you? Open Original Shared Link

 

It's tough to change your cooking ways, but it can be done.  Those first few months are hard though.  (hugs) Hang in there.

[beth01]

You don't necessarily need to shop at whole foods.  A lot of foods you can get at any old supermarket and some people order bulk flours and such which you can get online.  It's an adjustment but a worthy one when you start to feel better.  You might also have other "symptoms" that you didn't even realize were related.  Just look at it as a whole new you.  Make sure you read the newbie thread and learn about cross contamination under the "coping" section here on the forums.

[SMRI]

I guess that's where I'm so confused.. I have zero diarrhea, no weight loss (I'm actually overweight for my height), no skin outbreaks, no migraines.  I went to the doc because EVERYTHING that touches my stomach makes it roll and bloat.  Water will do it.  So it's not just gluten products.  I'm hoping my blood work comes back negative as I live in a rural area and there are no Whole Foods markets, Publix, nothing.  I take care of my parents every night who eat old-school southern cooking ONLY.  This will be a huge adjustment.  I'm just very overwhelmed right now.

 

It's overwhelming for the thought of going gluten free.  I was recently diagnosed as well and I pictured this life changing illness that would take weeks and weeks to prepare to do...well, while a lot of foods have gluten in them, a lot do not and with some simple modifications, you can be fine without living near a Whole Foods.  I think the closest Whole Foods to me is about 4 hours away.  I'm not sure what "old-school southern cooking" is but in my mind that is a lot of breaded and fried foods.  You cook the same, just use rice flour or similar instead of wheat and use "clean" oil to fry foods.  Meat, vegetables, corn chips, etc. are all fine.  I'm actually surprise how many "regular" foods are gluten-free.  I certainly did not want to be Celiac, would prefer not to have to think about it, but it's not as overwhelming as people are making it out to seem.