Can A Biopsy Lie?

[kaki-clam]

I have been gluten free for two years tomorrow....i still feel like crap...there could be a number of reasons...like for example, i hate my job!!!!!!!! and I like being sick from it.....but, I am not here to complain about work.. I was diagnoised with Celiac via an intestinal biopsy.....the blood test was negitive for the IGA stuff they look for.....it was all normal, but the biopsy was positive...can it be wrong? Is it possible i have another problem instead???

[GlutenFreeManna]

I have been gluten free for two years tomorrow....i still feel like crap...there could be a number of reasons...like for example, i hate my job!!!!!!!! and I like being sick from it.....but, I am not here to complain about work.. I was diagnoised with Celiac via an intestinal biopsy.....the blood test was negitive for the IGA stuff they look for.....it was all normal, but the biopsy was positive...can it be wrong? Is it possible i have another problem instead???

It is very possible you have additional food intolerances or another condition besides just celiac. If the biospy was positive for celiac however that is very accurate. There are not really false positives from what I've read. Since it's been two years I think it's time to get retested and see if you have healed. If your biopsies are clean this time then it means the gluten-free diet worked to heal your celiac damage but you have something else going on like an addition food allergy or an additional autoimmune condition. If your biopsy is still positive then you may not be following the diet strict enough or you may have refractory celiac which is celiac that does not respond to a gluten-free diet (very, very rare).

First step is to get back in to a dr and tell them what's going on. This board can also help walk you through an elimiantion diet if you suspect additional food intolerances. Or we can help you to figure out possible sources of cc if you think gluten might still be getting you somehow.

[Gluten Free Traveller]

Sorry to hear that..If they did the biopsy and found damage I would doubt it would be wrong. You say you've been gluten-free for two years and still feel crap..did you ever start to feel better or have you felt bad the whole 2 years still your diagnosis? perhaps you are still eating something gluten containing without realising it? Are you really careful about cross contamination etc?

Are you still getting all the symptoms like before you stopped eating gluten. If they have disappeared perhaps it is your job that's making you feel bad.

Alternatively perhaps you have another intolerance to something on top of being celiac which keeps you feeling crappy..like milk or soy or dairy?

[Skylark]

I have been gluten free for two years tomorrow....i still feel like crap...there could be a number of reasons...like for example, i hate my job!!!!!!!! and I like being sick from it.....but, I am not here to complain about work.. I was diagnoised with Celiac via an intestinal biopsy.....the blood test was negitive for the IGA stuff they look for.....it was all normal, but the biopsy was positive...can it be wrong? Is it possible i have another problem instead???

It's not likely. Wikipedia says "The villous atrophy seen on biopsy may also be due to unrelated causes, such as tropical sprue, giardiasis and radiation enteritis."

Open Original Shared Link

Your doctor should have ruled out giardia and unless you've traveled (or are posting from an equatorial region) it's not going to be tropical sprue. Radiation enteritis takes a LOT of radiation. I've also seen HIV enteritis as a cause for villous atrophy but you'd be pretty sick and I doubt that's your problem. So chances are you're celiac.

Other food intolerances don't cause villous atrophy but they can make you feel really sick. Keep an eye on dairy and soy.

[kaki-clam]

I follow a strict paleo diet, gluten free, grain free, dairy free. My only indulgence is diet mountain dew. I feel better most days, but when i feel sick, it's like it was before going gluten free. I eat only fresh meat and veggies..all house hold members follow this diet. All vitamins and supplements i take are certified gluten free. I am not sure how something could be contaiminated.

[ravenwoodglass]

I follow a strict paleo diet, gluten free, grain free, dairy free. My only indulgence is diet mountain dew. I feel better most days, but when i feel sick, it's like it was before going gluten free. I eat only fresh meat and veggies..all house hold members follow this diet. All vitamins and supplements i take are certified gluten free. I am not sure how something could be contaiminated.

Do any of those vitamins or supplements contain wheat or barley grass? They can say they are gluten free but many of us do still have a problem with them. Do you use any gluten ingredient containing toiletries? Do any arts and crafts that use products containing gluten?

[love2travel]

I follow a strict paleo diet, gluten free, grain free, dairy free. My only indulgence is diet mountain dew. I feel better most days, but when i feel sick, it's like it was before going gluten free. I eat only fresh meat and veggies..all house hold members follow this diet. All vitamins and supplements i take are certified gluten free. I am not sure how something could be contaiminated.

This is nothing to do with your biopsy but perhaps you feel ill from aspartame from the diet Mountain Dew. Upon the advice of my chiropractor I eliminated aspartame from my diet as it can exacerbate abdominal issues in some as well as increased muscle pain. Hopefully this is not true for you because I know it is your special indulgence.

[zus888]

The biopsy doesn't lie in that it says there's villous atrophy when there isn't, but the cause doesn't necessarily have to be celiac. The probability is that it IS celiac, but it could also be due to soy or dairy intolerance, lymphoma, intestinal cancer, crohns, or the things mentioned above. I would say that if there's been no improvement in a follow-up endoscopy that you consider OTHER possibilities (as opposed to you getting CC'd).

[JoshB]

There are many things that can cause level I and II changes, but few that can cause level III. So it depends on how "bad" your biopsy was. If it was really level III changes -- which is normal for long term celiac disease, then the biopsy should be reasonably dependable. Though, it's apparently pretty easy to orient the sample the wrong direction on the microscope slide and make it look like you have flattened villi. That is much more likely, I think, than a true negative blood test and positive biopsy. I really don't think much of the biopsy, despite it for some reason being the "gold" standard. Maybe that's because it makes the doctors a lot of gold?

The blood test accuracy assumes that you have normal IGA serum levels, which they should have tested for.

Not a doctor, etc... read the studies yourself and write down what you need to discuss with your gastro. It's also certainly possible to have celiac disease + something else. There are unfortunately other digestive problems that seem to be more likely if you have celiac disease.

[Lisa]

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

Other possible causes for Flattened Villi:

* Coeliac Disease

* Cows Milk Protein Intolerance

* Soy Protein Intolerance

* refractory Sprue

* collagenous Sprue

* Immunodefiency Synodromes

* Mediterranean lymphoma

* intestinal ulceration

* Gastroenteritis

* Intractable Diarrhoea of Infancy

* Protein Calorie Malnutrition

* Kwashiorkor

* Tropical Sprue

* Parasitic Disease:

o Giardiasis

o Strongyloidiasis

o Coccidiosis

o Intestinal Capillariasis

o Hookworm Disease

* Eosinophilic Gastroenteritis

* Contaminated bowel Syndrome

* Drug and Radiation Damage

[Skylark]

I follow a strict paleo diet, gluten free, grain free, dairy free. My only indulgence is diet mountain dew. I feel better most days, but when i feel sick, it's like it was before going gluten free. I eat only fresh meat and veggies..all house hold members follow this diet. All vitamins and supplements i take are certified gluten free. I am not sure how something could be contaiminated.

How frustrating. The one thing that comes to mind is tartrazine (FD&C Yellow #5). It's the food color in Mountain Dew and some people are allergic to it. Any way you could switch soft drinks to something without the tartrazine for a little while?

The other thing that might be getting you are natural food chemicals.

Open Original Shared Link has some information on it. With paleo, it would most likely be amines or salicylates.