No Serology Needed?

[Emmadax]

Hi Everyone,

 

So, I was diagnosed with celiac disease following an endoscopy (x2) and a colonoscopy because of loose stool. It was found that I had a small peptic ulcer which has since healed and the GI doc. told me that I had celiac disease and microscopic colitis. I went on a Gluten free diet but the loose stool hasn't stopped. I go 2-3 times a day. Because of "life" I was delayed in getting the serology done and read that one should really be on a normal diet in order for a proper result for the serology. I called the doc to ask her if I should go back to a normal diet and then get the blood test done but she told me that, despite my still having the very loose stool and being on a gluten free diet, I could forget about the serology test and that what I experiencing was "normal'. It never used to be loose...it was always normal and formed.

Now I am confused. I feel that having the serology blood work done would be definiative but that would mean going onto a regular diet for 6 weeks.

I'm asking what you all think. She told me that my disease is benign and to just keep going with the gluten free diet.

Does anyone have "normal' bowel movements or should I consider my loose, sometimes watery stools "normal"?

Thanks

[ravenwoodglass]

Welcome to the board. Are you on any medication for the MC? Some meds cause loose stool and if that is the case then things should improve a bit more when you are off the medication. Do be sure to check and make sure that any meds you take are gluten free.

That said it can take some time to heal. How long have you been gluten free? It is a good idea to drop dairy products at first if you haven't already. Most of us can add them back in after we have healed a bit.

 Be sure to read the Newbie 101 thread at the top of the Coping section as there is more to being gluten free that just foods. There are things we need to do to prevent cross contamination and stuff that has to be replaced in the kitchen like the toaster and cutting boards, as one example.

I hope you are feeling better soon. 

[murphy203]

Hi Emma, I am new at this, but I am in sort of the same boat with positive biopsies. Both my PC and GI suggested HLA genetic tests, which cant rule celiac disease in but can rule it out. Its also indicated in national and international journal articles. There is no need to be on a gluten diet for these tests.

[Emmadax]

Welcome to the board. Are you on any medication for the MC? Some meds cause loose stool and if that is the case then things should improve a bit more when you are off the medication. Do be sure to check and make sure that any meds you take are gluten free.

That said it can take some time to heal. How long have you been gluten free? It is a good idea to drop dairy products at first if you haven't already. Most of us can add them back in after we have healed a bit.

 Be sure to read the Newbie 101 thread at the top of the Coping section as there is more to being gluten free that just foods. There are things we need to do to prevent cross contamination and stuff that has to be replaced in the kitchen like the toaster and cutting boards, as one example.

I hope you are feeling better soon. 

Hi raven,

I'm not on any meds for the MC as it's microscopic and the Doc felt that it was so benign that it wasn't worth worrying about. I was on a PPI (Protonix...a proton pump inhibitor) for the ulcer and read that it could cause loose BMs. I am now off of it as the ulcer is healed. I've been on a gluten-free diet for about 6 weeks but did not get the serology done. It was a "duh" on my part because I should have realized that moving so quickly to a gluten-free diet would result in a false negative. That's why I called my GI doc. Now she doesn't think that having the serology test done is necessary. Thanks so much for your input!

[Emmadax]

Hi Emma, I am new at this, but I am in sort of the same boat with positive biopsies. Both my PC and GI suggested HLA genetic tests, which cant rule celiac disease in but can rule it out. Its also indicated in national and international journal articles. There is no need to be on a gluten diet for these tests.

Hi Murphy,

Thanks for your reply. No-one suggested HLA genetic testing but I doubt it would show much. There is a history of GI troubles in my family but not celiac disease. I may just have to live with the loose BMs as my GI thought it was "perfectly normal". I must say that I'm tempted to go back to a normal diet but it would have to be for 6 weeks for the serology to be somewhat accurate...but then I'd be back to square one.

Thanks again.

[kareng]

6 weeks isn't very long. It can take a year to get the whole system healed and balanced and working again. And then there is the colitis causing issues.....

[nvsmom]

Some frank poop talk:

 

Poops can can a long time to change.  In my case, I had C for my entire life but I thought it was normal.  Everything was well formed but in hindsight, it was packed way too tightly.  Take a look at the Bristol Stool Form Scale to check and see if your BM's were actually normal.  Open Original Shared Link

 

As I said, I thought I was normal, and managed to go evry day or so, but looking at the chart, I was usually a 2 who switched to 1 or 3 on occassion.  When I was gluten-free for about 9 months, my BM's changed to a 4 or 5, with a 6 once in a while... I honestly thought I had D.  And going a couple of times a day was just odd.  My toilet paper bill quadrupled.  LOL 

 

I babbled.  My point is that you should make sure that your BMs are actually abnormal.  Maybe it is just a new normal that you aren't used to.

 

You could always try testing now even though you are gluten-free.  The tTG IgA and tTG IgG are the slowest tests to get back to normal; in some it can remain elevated for weeks, months, or even a year or so after going gluten-free.   The EMA IgA, DGP IgA and DGP IgG tend to reflect a gluten-free diet faster. 

 

It sounds like you already have a diagnosis of celiac disease, so you don't need to put yourself through a 2-3 month gluten challenge (and sickness) to re-confirm your diagnosis.  Maybe try the tissue transglutaminase (tTG) tests now, and see it it shows anything. It may be normal, indicating that you are starting to heal, or it may still be elevated which means your recovery will take more time... As Kareng said, 6 weeks isn't very long, and some celiacs (like me) tend to feel worse before they get better.  Hang in there.

 

Hi Emma, I am new at this, but I am in sort of the same boat with positive biopsies. Both my PC and GI suggested HLA genetic tests, which cant rule celiac disease in but can rule it out. Its also indicated in national and international journal articles. There is no need to be on a gluten diet for these tests.

 

Unfortunately negative HLA (DQ2 and DQ8) tests will not rule out celiac disease, but it would make it unlikely that you could contract it.  About 97% of all celiacs have one of the two HLA types, the remaining 3% of celiacs do not.  It is possible to have celiac disease wih a negative HLA test, it is just very unusual.... We do have a couple of board members in that situation though.

[murphy203]

nsv, I am challening you on a point cautiously as you are a moderator, but both the national and international guidelines (which are both frequently referenced on this site, and hugely informative) recommend HLA for those of us with ambiguous testing, especially those of us with biopsy positive results. There are many things that can lead to a positive biopsy, and it is important to rule OUT what ISN'T, just like with neuro testing.

[nvsmom]

Hi Murphy 203,

You are correct that HLA testing can help rule things out, but with a positive test, or biopsy, you probably have your answer... probably. You are correct that the HLA can help clarify some questionable test results, but from what I have read, and heard from a minority of celiacs, I believe there are a very small number celiacs who do not have the HLA genes.  I could be completely wrong...  I'm waiting for more information to sway me, but I haven't been inclined to change my mind yet. Many don't agree with me, and that is fine with me since they very well may be correct. You may be right, and most will probably agree with you.

 

 It's a shame that all of our celiac disease tests aren't 100% specific to celiac disease.  Knowing there is a 5% or so chance of a positive not being caused by celiac disease can make trusting a diagnosis of celiac disease difficult for some. It would do away with some of the need for the HLA tests.

 

I do firmly believe that a positive test is almost always positive for a reason though, and that reason is celiac disease almost all of the time.  I think of it like a pregnancy test.  Some people get the very dark lines whereas others get a faint line but 9 months later it will almost always mean the same thing.  

 

Best wishes.

[nvsmom]

nsv, I am challening you on a point cautiously as you are a moderator, but both the national and international guidelines (which are both frequently referenced on this site, and hugely informative) recommend HLA for those of us with ambiguous testing, especially those of us with biopsy positive results. There are many things that can lead to a positive biopsy, and it is important to rule OUT what ISN'T, just like with neuro testing.

 

Hi Murphy 203,

You are correct that HLA testing can help rule things out, but with a positive test, or biopsy, you probably have your answer... probably. You are correct that the HLA can help clarify some questionable test results, but from what I have read, and heard from a minority of celiacs, I believe there are a very small number celiacs who do not have the HLA genes.  I could be completely wrong...  I'm waiting for more information to sway me, but I haven't been inclined to change my mind yet. Many don't agree with me, and that is fine with me since they very well may be correct. You may be right, and most will probably agree with you. 

 

 It's a shame that all of our celiac disease tests aren't 100% specific to celiac disease.  Knowing there is a 5% or so chance of a positive not being caused by celiac disease can make trusting a diagnosis of celiac disease difficult for some. It would do away with some of the need for the HLA tests.

 

I do firmly believe that a positive test is almost always positive for a reason though, and that reason is celiac disease almost all of the time.  I think of it like a pregnancy test.  Some people get the very dark lines whereas others get a faint line but 9 months later it will almost always mean the same thing.  

 

Best wishes.

 

ps.  Please feel free to challenge me.    I think I was made a mod because I like to talk a lot around here, and have a propensity towards spewing out facts and questioning the medical community.   LOL