Celiac testing concerns

[ShelbySumner]

Hello Everyone, I recently found out that I may have Celiac disease and may not have gotten the best testing possible. I'm 21 and have been experiencing symptoms since I was 14. I've seen different doctors but have never received any answers for my symptoms. About 5 months ago I met my fathers side of the family including my sister and found out that my Aunt and my sister both have Celiac disease and my symptoms are almost identical to theirs.

I saw a doctor last week and she acted as though I was crazy for thinking I had the disease but sent me to the lab to get a celiac blood panel test. I am now reading that this test can be extremely inaccurate and the disease itself is very hard to diagnose. I cut out gluten for a month and had no symptoms but went back on a gluten diet when I found out i would be having the test done. I'm afraid my results will come back negative and I wont receive any further diagnosing so I was curious if anyone else has had this dilemma  and what you did about it? Thank you! 

[GFinDC]

Hi Shelby,

Welcome to the forum!

Your testing situation isn't unusual.  Way too often it happens that doctors will tell people to "try" the gluten-free diet, instead of doing testing.  And now with the popularity of the gluten-free diet as a cure-all for all kinds of symptoms, many people decide to try it themselves without getting tested first.

You are right to wonder if you will get good test results.  You may get a positive though, there is no way to know for sure.  The University of Chicago celiac center suggests a 2 week gluten challenge (eating gluten) before the endoscopy and 12 weeks before the blood tests.

Some people decide to do the full gluten challenge and try to get a full diagnosis.  Others decide to go gluten-free without a full diagnosis and stay that way.  It's all an individual choice situation.  Myself I had been gluten-free for 4 months before I got to see the doctor and I was working, so I decided not to do the challenge.

[ShelbySumner]

4 hours ago, GFinDC said:

Hi Shelby,

Welcome to the forum!

Your testing situation isn't unusual.  Way too often it happens that doctors will tell people to "try" the gluten-free diet, instead of doing testing.  And now with the popularity of the gluten-free diet as a cure-all for all kinds of symptoms, many people decide to try it themselves without getting tested first.

You are right to wonder if you will get good test results.  You may get a positive though, there is no way to know for sure.  The University of Chicago celiac center suggests a 2 week gluten challenge (eating gluten) before the endoscopy and 12 weeks before the blood tests.

Some people decide to do the full gluten challenge and try to get a full diagnosis.  Others decide to go gluten-free without a full diagnosis and stay that way.  It's all an individual choice situation.  Myself I had been gluten-free for 4 months before I got to see the doctor and I was working, so I decided not to do the challenge.

Thank you for the Input!

[NightSky]

On Tuesday, March 14, 2017 at 10:33 PM, GFinDC said:

Hi Shelby,

Welcome to the forum!

Your testing situation isn't unusual.  Way too often it happens that doctors will tell people to "try" the gluten-free diet, instead of doing testing.  And now with the popularity of the gluten-free diet as a cure-all for all kinds of symptoms, many people decide to try it themselves without getting tested first.

You are right to wonder if you will get good test results.  You may get a positive though, there is no way to know for sure.  The University of Chicago celiac center suggests a 2 week gluten challenge (eating gluten) before the endoscopy and 12 weeks before the blood tests.

Some people decide to do the full gluten challenge and try to get a full diagnosis.  Others decide to go gluten-free without a full diagnosis and stay that way.  It's all an individual choice situation.  Myself I had been gluten-free for 4 months before I got to see the doctor and I was working, so I decided not to do the challenge.

Hi GFinDC, can I ask how it has been for you not having a diagnosis? Have you sought follow up care such as bone scans? I am in the same boat, having given up gluten five years ago and reacting severely to trace amounts. I don't feel I need a diagnosis for myself but really just to help others around me. It can be hard for them to understand and accept. I hear the University of Oslo is developing a test for diagnosis that won't require gluten ingestion. Counting the days, weeks, possibly years for that to come out!

[GFinDC]

10 minutes ago, NightSky said:

Hi GFinDC, can I ask how it has been for you not having a diagnosis? Have you sought follow up care such as bone scans? I am in the same boat, having given up gluten five years ago and reacting severely to trace amounts. I don't feel I need a diagnosis for myself but really just to help others around me. It can be hard for them to understand and accept. I hear the University of Oslo is developing a test for diagnosis that won't require gluten ingestion. Counting the days, weeks, possibly years for that to come out!

Hi NightSky,

It's been fine for me.  My doctors accept that I have celiac.  I haven't had any specific followup testing though. so I guess its not a big deal to them either.     That's ok with me.  Nope, I never had a bone scan that I know of anyway.  I broke my left elbow in 5 places years ago and maybe they did one then, but I never heard about it.

My family accepts that I have celiac also.  They are fine with it too!   That new test sounds really helpful.  I agree, it would be great to have that test available!

I have friends who try to get me to eat gluten sometimes, mostly because they just don't understand it.  That's not a surprise though.  Heck, I didn't understand celiac disease until quite a while after I got it.

A conclusive test that doesn't require an endoscopy would be a real step forward for people with celiac.  They might find a lot more of the missing celiacs.

 

[NightSky]

That's great your doctors accept that you are celiac. They sound like keepers!