In The Middle Of A Possible Diagnosis?

[kadege]

Hey everyone!

 

Last Monday I went to the Dr for a checkup because I'd been getting stomachaches everyday and feeling really tired all. the. time. One bloodtest she did was for Celiac. She tested 3 markers, and 1 came back positive. She said that in order to know for sure I'd have to have a biopsy, so she recommended instead that I go gluten free for 12 weeks and then come back for another blood test. After that, if they still think I have it, she'd recommend a biopsy to confirm. 

 

I've been gluten free for almost a week now (phew!) and I will say I've been feeling better slowly but surely. I don't get daily stomachaches anymore and lately I can make it til about 8pm until I'm tired instead of being out of energy by 1pm! 

 

What's strange to me (and the reason I'm posting) is that I don't have any celiac in my family and also that the marker that was positive was a 329 with a normal range being 0-19 and the other two were in normal ranges. It just seems strange to me, but I'm definitely no doctor... anyone have any thoughts?

[beth01]

I'm not a doctor, just a Celiac.  I wonder why your doctor doesn't have you getting a biopsy right away?  After three months of gluten free, to do a gluten challenge after that.... you will feel like absolute SH*T.  I would start eating gluten again and ask for a biopsy sooner, but see what others say. 

[cyclinglady]

Your doctor does not seem to be following normal protocol in diagnosing celiac disease. Here is a link from the University of Chicago's celiac website that you can review, print and share with your doctor. You should be referred to a Gastroentologist for biopsies via an endoscopy.

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I personally think going gluten free for 12 weeks and then getting retested is crazy. You might get a negative result, think that you do NOT have celiac disease and then go back to eating gluten and further damaging your body. Are you sure you have this right?

Can you post your test results?

I am the first in my family to get a diagnosis. This is not unusual. I also tested positive on only one of the tests DPG.

Welcome to the forum!

[beth01]

I am also the first in my family with a celiac diagnosis, but there have been two others diagnosed since, my daughter being one of them.

[ravenwoodglass]

So your doctor is having you go gluten free for 3 months and is then going to blood test again. Is she looking for that antiboy level to have gone down? Hopefully that is the case. If it is the case then the doc should IMHO diagnose you at that point. To send you for a biopsy after you have healed is certainly not going to get you a diagnosis as it will likely be a false negative unless the doc is planning on having you go back on gluten before the biopsy. As another poster stated that will likely make you very ill and you may still get a false negative on the biopsy. You have two choices at this point, go back on gluten and demand the biopsy be done soon or take the positive blood test and your improvement on the diet and continue to heal. Your present doctor seems woefully uninformed on the diagnosis process so you may want to consider finding a new doctor or printing out some info on the celiac diagnosis process for her education. 

[Celiacandme]

I can't believe your doctor did not send you right away for an endoscopy. Yeesh. How terrible. I would call and ask to be sent to a gastroenterologist now. Get that biopsy done before you begin this lifelong diet change. I'm sorry your doctor suggested it this way.  Keep us posted on if you can get in sooner!

 

(By the way, there are also more than 3 markers to test for celiac disease. You never know the other two or one of them may have come back positive. And sometimes people don't show positive in blood work if they aren't always eating gluten. Sounds like that one marker for you was extremely high though!)

[kadege]

Here are my results:

 

Message from Dr:

[kadege]

So your doctor is having you go gluten free for 3 months and is then going to blood test again. Is she looking for that antiboy level to have gone down? Hopefully that is the case. If it is the case then the doc should IMHO diagnose you at that point. To send you for a biopsy after you have healed is certainly not going to get you a diagnosis as it will likely be a false negative unless the doc is planning on having you go back on gluten before the biopsy. As another poster stated that will likely make you very ill and you may still get a false negative on the biopsy. You have two choices at this point, go back on gluten and demand the biopsy be done soon or take the positive blood test and your improvement on the diet and continue to heal. Your present doctor seems woefully uninformed on the diagnosis process so you may want to consider finding a new doctor or printing out some info on the celiac diagnosis process for her education. 

 

 

Yes, I believe her plan was to see if the antibodies go away.

[kadege]

Your doctor does not seem to be following normal protocol in diagnosing celiac disease. Here is a link from the University of Chicago's celiac website that you can review, print and share with your doctor. You should be referred to a Gastroentologist for biopsies via an endoscopy.

Open Original Shared Link

I personally think going gluten free for 12 weeks and then getting retested is crazy. You might get a negative result, think that you do NOT have celiac disease and then go back to eating gluten and further damaging your body. Are you sure you have this right?

Can you post your test results?

I am the first in my family to get a diagnosis. This is not unusual. I also tested positive on only one of the tests DPG.

Welcome to the forum!

I posted my results & the message from my Dr. in a reply to the post. I'm not sur eif it will notify you so I am telling you like this as well.

[Celiacandme]

So based on what your doctor wrote in the comments section maybe she won't be sending you for a scope either. I wonder if your numbers improve after the 12 weeks if she'll just give you the diagnosis and say stick with the diet!? By the way, going back to your original post about being the only one in your family - I am also. But your family should be tested. They could just not be symptomatic. To be safe, they should be screened for celiac disease.

[kadege]

So based on what your doctor wrote in the comments section maybe she won't be sending you for a scope either. I wonder if your numbers improve after the 12 weeks if she'll just give you the diagnosis and say stick with the diet!? By the way, going back to your original post about being the only one in your family - I am also. But your family should be tested. They could just not be symptomatic. To be safe, they should be screened for celiac disease.

 

I would be totally fine with not getting a scope if the blood tests would be conclusive enough! I'm not having any problems being very strict with myself... the threat of damaging my intestines is scary enough to keep me on it haha 

[beth01]

I would maybe ask if your doctor is willing to diagnose you as Celiac if your gluten free diet decreases your antibody levels?  If you don't NEED a diagnosis, you can always just consider yourself a celiac if you see positive results.  I know some like to have the diagnosis if they need it for school purposes, and some would like to have it incase of being in a nursing home later in life.  The scope is invasive, but it isn't any worse than having a colonoscopy.  If you want a diagnosis and your doctor isn't willing to diagnose on the labs alone, I would ask for the scope soon.  You really don't want to do a gluten challenge after being gluten free, it makes all your previous symptoms seem like a cake walk.

[kadege]

It's looking like I misunderstood what the process would be. I asked her, and she said that if the antibodies and symptoms go away after a gluten free diet, she would have a diagnosis, but if the antibodies are still there, we would look at other possibilities. She said if I wanted to be referred to a gastroenterologist after that she would, but that she doesn't think it would be necessary.

[cyclinglady]

Antibodies for celiac disease can remain high up to a year (or longer) after diagnosis and that is while ON a gluten free diet. Symptoms can take years to resolve for some while others find relief within a few weeks. There are no set times for healing because everyone has different symptoms and degrees of damage.

I would ask for the GI consult. Get a second opinion. Your GP has it wrong based on published standard protocol:

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[kadege]

Hey everyone! 

 

I ended up sticking to the gluten-free diet for 3 months and got the second blood test to see what would happen. My results are crazy though. After only 3 months of trying really hard but definitely consuming a little gluten here and there, my antibodies have gone almost completely away. The value that was 329 before is now only 3. 

 

Based on everything I've read on here and in general, it doesn't seem like my antibodies should have gone down that fast especially considering accidental cross contamination and the learning curve. My doctor sent me a message basically saying she counts this as a diagnosis and sees no reason for followup, but I've decided to get a second opinion. I'm going back to my hometown for a wedding in a few weeks and so I thought it would be good to get another blood test from my doctor back there. 

That means I have to eat gluten before then. I had a cupcake tonight and it was delicious, and I feel absolutely fine (hopefully this lasts!) but do you guys think a few weeks is enough time to get my antibodies back up? Or is this a waste of time?

[ravenwoodglass]

Instead of doing a challenge to see if you can raise the antibody levels again maybe just have those levels rechecked without the challenge to make sure they really are down. How are you doing symptom wise? If your symptoms have gotten better IMHO that would be a better way to go than making yourself sick again.

[kadege]

Well, for me the question isn't so much are they really down as it is were they ever really that elevated? I feel like there was some sort of mistake in thinking I ever had this in the first place. (I definitely know I could be wrong about that!!) but I feel like because I had so few symptoms (none of which were serious), was only sick for a few weeks after being fine my whole life, etc... Part of me feels like I had a false negative either from some other source of antibodies or a lab mistake of some kind. 

 

 

Instead of doing a challenge to see if you can raise the antibody levels again maybe just have those levels rechecked without the challenge to make sure they really are down. How are you doing symptom wise? If your symptoms have gotten better IMHO that would be a better way to go than making yourself sick again.

[squirmingitch]

If you insist on doing a challenge then you need to do it right. That would be 12 weeks of eating at least 1/2 slice of bread per day for TWELVE weeks. See:

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[squirmingitch]

You DO understand that there is such a thing as silent celiac disease where the person has ZERO symptoms don't you? Furthermore, there are people who have milder &/or fewer symptoms AND then there are people who just began having symptoms which usually get worse the longer they go on eating gluten. But you can think it was all just a big mistake if you want to.

[kadege]

I feel like you might be a little annoyed/offended that I'm trying to get a second opinion on this. Please understand that I have done tons of research on all of this and I know that there are people with few to no symptoms. That's why I included the disclaimer that I know I might be wrong. But I'm only 20 years old, and going completely gluten free is a HUGE and expensive lifestyle change (which you obviously know) so I just want to be 100% sure before I dedicate the next 60-80 years of my life to it. 

 

You DO understand that there is such a thing as silent celiac disease where the person has ZERO symptoms don't you? Furthermore, there are people who have milder &/or fewer symptoms AND then there are people who just began having symptoms which usually get worse the longer they go on eating gluten. But you can think it was all just a big mistake if you want to.

[squirmingitch]

I feel like you might be a little annoyed/offended that I'm trying to get a second opinion on this. Please understand that I have done tons of research on all of this and I know that there are people with few to no symptoms. That's why I included the disclaimer that I know I might be wrong. But I'm only 20 years old, and going completely gluten free is a HUGE and expensive lifestyle change (which you obviously know) so I just want to be 100% sure before I dedicate the next 60-80 years of my life to it. 

That's fine. It's your choice completely. I just wanted to make sure you really knew there can be little to no symptoms AND that if you want a second opinion then "a few weeks" of eating gluten will not be the end all test you hope to achieve. That you will need to eat gluten much longer than a few weeks. I didn't want you thinking you could re-test in that short of a time. 

[RMJ]

I'm going back to my hometown for a wedding in a few weeks and so I thought it would be good to get another blood test from my doctor back there. 

Just a caution - It is not good to compare numerical results from different laboratories. They may use tests from different manufacturers with different reference ranges. The units they report are not universal, but are defined by each manufacturer. You could atill see if you get positive reaults again after eating gluten.

[kadege]

Okay thanks! I will wait the recommended amount of time before getting another test, as I don't want to mess it up just because I was rushing. 

 

That's fine. It's your choice completely. I just wanted to make sure you really knew there can be little to no symptoms AND that if you want a second opinion then "a few weeks" of eating gluten will not be the end all test you hope to achieve. That you will need to eat gluten much longer than a few weeks. I didn't want you thinking you could re-test in that short of a time. 

[kadege]

Oh yeah, definitely. The plan was basically just to see if I even got a positive result at all, not so much to compare the exact numbers.

 

Just a caution - It is not good to compare numerical results from different laboratories. They may use tests from different manufacturers with different reference ranges. The units they report are not universal, but are defined by each manufacturer. You could atill see if you get positive reaults again after eating gluten.