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We're Not Sure - Let's Try It

Kristin07

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Kristin07 Newbie
Kristin07
Posted

I have had gastrointestinal issues my whole life (35 years old). I get stomachaches often but have always had issues with severe constipation (never diarrhea like most celiac patients) and figured it was all related to that. They coined it as IBS back in 2003 and that was the end of it. Recently I was seen by the doctor for some unrelated issue and she asked me about my history of stomach issues. She asked if I was ever tested for celiac and I said no. She order the following blood tests and here are the results:

ENDOMYSIAL AB, IgA-DYN Positive

Mitochondrial Ab Screen <20.0 (Normal)

So even though these test results were odd (1 positive 1 negative) to say the least, they sent me for the biopsy. The biopsy came back as likely mild positive. When I have asked what that means, they said and I quote "they saw something but they are not even really sure you have it, they want you to try the diet to see if it reduces your symptoms." I am not ok with this response. This could be a drastic life change and I want to know for sure.

Can this be false positive? Is a second opinion required here?

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lynnelise Apprentice
lynnelise
Posted

False negatives are much more common than false positives. So to have a positive blood and a borderline positive biopsy seems pretty certain that you need the diet.

RacerX35 Rookie
RacerX35
Posted

Better to safe than sorry. My first tests were 50/50. My doctor asked if I had already gone gluten free before my blood tests and I said I thought I had (my memory isn't always very good and I blame the epilepsy). I did an endoscopy and it said that I was sensitive, not celiac. Good enough for me. The crazy thing for me is to realize that I have become more sensitive since going gluten-free. Eat wheat and have multiple siezures for about a day or so.

Later,

Ray B)

IrishHeart Veteran
IrishHeart
Posted

You have one smart doctor!!--testing you for celiac disease. Most will never think of it and this leaves many undiagnosed for years.

Anti-endomysial antibodies (AEA) are very specific and found in 100% of patients with active celiac disease. You were sent for biopsy based on this positive result, no doubt.

The Mitochondrial AB Screen was probably done to rule out liver, bile duct involvement--among other things --and she was being very thorough in searching for the cause of your stomach pain.

Celiac presents as constipation, diarrhea or as no gastro or bowel symptoms whatsoever. The thinking that celiac is just a "disease of diarrhea" as is often written in articles--is outdated --and this causes many to go undiagnosed for years. (IBS is a collection of symptoms not a diagnosis and it involves the large intestine.)

It appears your positive blood test and your "likely positive" biopsy (and I would ask for a more definitive answer than that, if I were you--just to clarify things for your own piece of mind) seems pretty clear that you have celiac disease, hon.

But, do get a second opinion if you want. This is your life and you deserve to know with 100% certainty.

I know this may not be the answer you were hoping for, but you will need to be gluten-free to enjoy a long, healthy life. Best wishes to you and I hope you will continue to come on this forum. There are many people on here who can help you as you adopt a gluten free lifestyle.

Korwyn Explorer
Korwyn
Posted
The biopsy came back as likely mild positive. When I have asked what that means, they said and I quote "they saw something but they are not even really sure you have it, they want you to try the diet to see if it reduces your symptoms." I am not ok with this response. This could be a drastic life change and I want to know for sure.

Can this be false positive? Is a second opinion required here?

Hi Kristin,

There is no such thing as 'mild positive'. That's like saying you are kinda pregnant or you kinda have cancer. You either are (or do) or you aren't (or don't). For a biopsy to show 'positive' in any manner is (IMO) positive. Now they may have intended that to mean, 'Mild flattening of the villi on the Marsh scale' which would make sense and your Dr. misunderstood (perhaps not understanding the Marsh scale or the biopsy results for celiac disease). But 'mild' in that case only indicates the degree of detected damage to the villi in the small intestine, which could vary highly. There are people who have had a full 'negative' biopsy, gone back for another biopsy within a few weeks and received a report of 'major damage to the villi'. It depends on the skill of the Dr. doing the biopsy and their familiarity with taking biopsy for celiac disease as well as the skill of the lab performing the analysis and the familiarity of the Dr. in interpreting the lab results. A false positive is technically possible but based on my reading and research I would have to say - especially given your presentation of symptoms - IMO a false positive is very, very unlikely.

Go for a second opinion if it will make you more comfortable, but I would suggest that if you do you undertake a gluten challenge for 6 weeks or so prior to the biopsy.

* Edited because I left out a whole sentence I wanted to say *

Kristin07 Newbie
Kristin07
Posted
  • Author

Thank you so much everyone. I have really been struggling with this greatly and then to get wishy washy answers by the doctors\PA's makes it worse. This site has been a fantastic resource.

The GI doc was sure it wouldn't be positive because I was constipated instead and because the liver test was normal. But I did figure if I have the antibodies then something is up.

The PA also told me because I am "mild if at all" I don't have to worry about cross contamination and I can use the same tools as the rest of the family and don't have to worry about going to restaurants. But....from what I understand any gluten can set off the immune system and cause troubles right?

I am also worried if I am only slightly "sensitive" will I make myself more sensitive.

GFinDC Veteran
GFinDC
Posted

A positive reaction to the gluten-free diet is a good test itself. Better in fact than the blood tests and endoscopy which can be inaccurate. It is part of the doctors tool kit for diagnosing you.

You should follow your doctors advice and try the gluten-free diet. A good way to start is not eating any processed foods. Stick to whole foods you cook from scratch yourself. Stopping all soy and dairy can be helpful also.

You don't get damage to your intestine by being "slightly sensitive". What does happen sometimes though is people do start feeling better after going gluten-free. And then when they are exposed to gluten again they notice the reactions more because they were feeling better. They may even have healed their intestine some. But then the autoimmune reaction starts up and the damage accelerates and you feel it. This is not being more sensitive, it is feeling the damage more. But you were having damage all along anyway pre-gluten-free. Letting that damage continue is not a good idea. If you stay on gluten it doesn't get less, or stay the same, it builds up and gets worse. And you also raise the chance of developing other autoimmune diseases and cancer. Search for celiac associated condition or related condition and check out the risks you are taking. Make an informed choice.

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IrishHeart Veteran
IrishHeart
Posted

Thank you so much everyone. I have really been struggling with this greatly and then to get wishy washy answers by the doctors\PA's makes it worse. This site has been a fantastic resource.

The GI doc was sure it wouldn't be positive because I was constipated instead and because the liver test was normal. But I did figure if I have the antibodies then something is up.

The PA also told me because I am "mild if at all" I don't have to worry about cross contamination and I can use the same tools as the rest of the family and don't have to worry about going to restaurants. But....from what I understand any gluten can set off the immune system and cause troubles right?

I am also worried if I am only slightly "sensitive" will I make myself more sensitive.

OMG!!Sorry, but your GI doctor and PA are giving you wrong information.

YOU DEFINITELY NEED A SECOND OPINION--FROM SOMEONE WHO KNOWS WHAT THE HELL THEY ARE TALKING ABOUT!!.

Any gluten will continue the autoimmune attack on your body,hon. Cross-contamination is a very real problem.

You need to educate yourself on gluten intolerance and celiac disease PRONTO!! This site can help.

Start with Living Gluten-free for Dummies by Danna Korn and read all you can. You need to see how the gluten free diet will help you feel better--and why the positive test results are nothing to ignore. Good luck!

Skylark Collaborator
Skylark
Posted

Nah, you don't need a second opinion. You do need to stop listening to PAs, though. They're terrible for anything other than getting your usual prescriptions filled. You have an antibody that is only ever caused by celiac and a biopsy that shows the damage is starting. Celiac disease is a process; you are just at the start rather than having severe damage. Get off gluten and don't look back.

There are degrees of sensitivity, but none allow for much CC. You need to have your own wooden spoons, colander, toaster, cutting board, and anything else that could have a lot of gluten on it. When eating out, you need a restaurant that understands the diet and can prepare you safe food that isn't CC.

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