Test results.... Please help!

[chell1329]

I recently had a bunch of bloodwork requested by my rheumatologist.  I was recently diagnosed with Fibro. I'm having an awful time with that diagnosis. Not because i don't think it's a  real awful disease  but because the docs told my sister she had it for years  and she passed away last January from a rare autinimmune  disease. ( I think I'm just paranoid)

symptoms are abdominal cramping/pain 

morning severe bloating and pain, itchy legs, no rash.  Some strange feeling in my brain, almost like someone is tickling it or putting cold fingers on it (crazy sounding I know). Burning on the side of my face. 

Ive had a egd and colonoscopy years ago findings were polyps and hiatal hernia, reflux, and what appeared to be a healing ulcer in stomach. 

the doc tested me for Celiac

and here's my results.... I am SO confused lol  PLEASE HELP! do I have celiac? Or not likely? 

Mod course these results came through my email and the doc isn't back in the office until next week  

GLIADIN IGG- 15.75. Range <15 u/ml
GLIADIN IGA- 102. Range <15 u/ml
ENDOMYSIAL IGG AB- negative 
ANTIRETICULIN AB IGA- negative

thanks to anyone who took the time to read this and maybe help put my mind at ease! 

 

[cyclinglady]

I am not a doctor, but it looks like you have a positive.  That typically means you should be scheduled to see a Gastroentrologist (GI) to have an endoscopy procedure to obtain four to six biopsies to help make a final diagnosis.  But you must keep eating gluten (wheat, rye or barley) daily until all testing is complete.  

The good news is that you have a source for your health issues and you should start to feel better soon.  Take the time to research celiac disease.  The University of Chicago's celiac website is a great place to start, along with this forum.  You can check out our Newbie 101 section under "Coping" for great tips.  

The Fibro?  My mom has it and she is managing well.  Address the celiac and you are bound to feel much better!  I am sorry to hear about your sister.  

[SLLRunner]

Welcome.  Cycling Lady gave wonderful advice. I am so sorry to hear about the loss of your sister. 

[chell1329]

Thank you so much.  I've been trying to do so much research but then I start getting confused because there is so much mention about the tts test?? My doctor didn't test me for that . I don't know why lol  so it as the bottom two tests that say negative that were throwing me off.  It's possible to be positive for celiac with the endomysial & ANTIRETICULIN being negative? 

I will be calling my GI doctor first thing Monday morning.  And hopefully not have to wait a long time to see them. 

Thank you for the advice. Especially on letting me know not to cut out any gluten. 

I'm glad to hear that your mom is doing well with the Fibro.  My sister struggled with that for years.  Unfortunately that wasn't the only problems she was having   

[cyclinglady]

Are you in the U.S.?  I ask because the tests you were given are considered old and obsolete.  

Open Original Shared Link

Never-the-less, you did get a positive and that warrants an endoscopy based on my research (or a set of current tests)  Here is the list of current tests:

Open Original Shared Link

i tested positive to only one test (DGP IGA) and then rest were negative.  Yet  biopsies (four to six tissue samples) revealed moderate to severe intestinal damage.  

 

[chell1329]

Hi.  Yes I'm in the U.S.  I live in Michigan.  I figured there was something odd with my tests because i was having a very hard time finding any type of results with those findings.  

Thank you for the resource link.  I will be calling my GI tomorrow and making an appointment.  I actually may be going to try and find a new one, because I have been complaining for years about these symptoms and my doc chalked it up to IBS.

[chell1329]

I wanted to add. That I constantly feel like I have a stomach bug and pain in the upper part of my abdomen, where my stomach is.  Feels like an ulcer almost, but there isn't one.  

Also muscle spasms and joint pain (hence the reason why I was seeing a rheumatologist) 

Is this consistent with you all who have a dx of celiac? 

[squirmingitch]

28 minutes ago, chell1329 said:

I wanted to add. That I constantly feel like I have a stomach bug and pain in the upper part of my abdomen, where my stomach is.  Feels like an ulcer almost, but there isn't one.  

Also muscle spasms and joint pain (hence the reason why I was seeing a rheumatologist) 

Is this consistent with you all who have a dx of celiac? 

Yup. Sure is. 

Am I missing something or aren't there 2 positives there cyclinglady? 

Both of these are positive:

GLIADIN IGG- 15.75. Range <15 u/ml
GLIADIN IGA- 102. Range <15 u/ml

My sympathies on the passing of your sister.

[chell1329]

Thank you squirmingitch! 

Wow I've been feeling like i have the stomach flu every day. For quite some time  never could figure out why.  Again doc said either gerd, IBS or of course anxiety 

i thought both of those tests were positive.  they are flagged as high on my results page. 

 

[cyclinglady]

1 hour ago, squirmingitch said:

Yup. Sure is. 

Am I missing something or aren't there 2 positives there cyclinglady? 

Both of these are positive:

GLIADIN IGG- 15.75. Range <15 u/ml
GLIADIN IGA- 102. Range <15 u/ml

My sympathies on the passing of your sister.

Good eyes!  Must need a new pair of readers!  

 

[squirmingitch]

chell, You might be interested in reading this list of 200 symptoms associated with celiac disease.

Open Original Shared Link

 

Oh & BTW, we call a dx of IBS a dx of I Be Stumped.

[chell1329]

39 minutes ago, squirmingitch said:

chell, You might be interested in reading this list of 200 symptoms associated with celiac disease.

Open Original Shared Link

 

Oh & BTW, we call a dx of IBS a dx of I Be Stumped.

Hahahah. That is so perfect! I was/am so tired of hearing that lol my mind always telling me "nope it's something more than that" 

thanks! Wow 200 symptoms curious to see how many of those I have!  And very anxious to get to a GI.  Although I pray that I don't have celiac it would be a nice relief to finally have an answer!   

[chell1329]

49 minutes ago, cyclinglady said:

Good eyes!  Must need a new pair of readers!  

 

Does it make it more likely that I'm going to receive a celiac dx with the two positives? Even though the other two are negative? I'm not even really sure what those other two tests are for? Is that the test that tells if there had been a start of intestinal damage, or can only the biopsy tell that? 

[cyclinglady]

You only need to have one positive in the celiac panel that would require the doctor (GI) to order an endoscopy.  Biopsies checking for villi damage are required for a celiac diagnosis per all the medical experts.  Read this link that supports this:

Open Original Shared Link

This second link states:

Consistent evidence indicates that IgA and IgG gliadin antibodies (AGA) have significantly lower specificity and sensitivity (and therefore low predictive value for coeliac disease) compared with EmA and anti-TG2 IgA and DGP IgG. Indeed, AGA positivity can be identified in a wide array of pathological conditions other than coeliac disease (e.g. liver disorders, autoimmune diseases and irritable bowel syndrome) and even in 2–12% of healthy subjects.15,16 As a result, IgA and IgG AGA are no longer used in clinical practice. In those rare patients who are positive for AGA IgA and IgG, the most advanced serological markers should be assessed.

Source:

Open Original Shared Link

I bring this up because I think your   rheumatologist used old tests.  I know for sure that the ANTIRETICULIN test is obsolete as I stated and supported in my earlier link.  The AGA tests are also old.  Are they useless?  I do not think so, but I am not a doctor.  The European GI group does not accept the old AGA tests.  

What can you do?  If possible, get a new rheumatologist who keeps up on medicine.  I would worry about going forward with this doctor even for your fibro.  If he can not use or does not know about the most current tests what else is he missing?  Get to a celiac savvy GI doctor.   He can re-order the celiac blood tests or accept your current results and order the endoscopy.  

Open Original Shared Link

[chell1329]

30 minutes ago, cyclinglady said:

You only need to have one positive in the celiac panel that would require the doctor (GI) to order an endoscopy.  Biopsies checking for villi damage are required for a celiac diagnosis per all the medical experts.  Read this link that supports this:

Open Original Shared Link

This second link states:

Consistent evidence indicates that IgA and IgG gliadin antibodies (AGA) have significantly lower specificity and sensitivity (and therefore low predictive value for coeliac disease) compared with EmA and anti-TG2 IgA and DGP IgG. Indeed, AGA positivity can be identified in a wide array of pathological conditions other than coeliac disease (e.g. liver disorders, autoimmune diseases and irritable bowel syndrome) and even in 2–12% of healthy subjects.15,16 As a result, IgA and IgG AGA are no longer used in clinical practice. In those rare patients who are positive for AGA IgA and IgG, the most advanced serological markers should be assessed.

Source:

Open Original Shared Link

I bring this up because I think your   rheumatologist used old tests.  I know for sure that the ANTIRETICULIN test is obsolete as I stated and supported in my earlier link.  The AGA tests are also old.  Are they useless?  I do not think so, but I am not a doctor.  The European GI group does not accept the old AGA tests.  

What can you do?  If possible, get a new rheumatologist who keeps up on medicine.  I would worry about going forward with this doctor even for your fibro.  If he can not use or does not know about the most current tests what else is he missing?  Get to a celiac savvy GI doctor.   He can re-order the celiac blood tests or accept your current results and order the endoscopy.  

Open Original Shared Link

This is upsetting! I could be sitting here worrying for no reason at all because this doctor doesn't know the current standard of tests! *sigh* 

i agree- need to find a new doctor ASAP! 

Thank you so much for your time and all your help  

[squirmingitch]

7 hours ago, chell1329 said:

Hahahah. That is so perfect! I was/am so tired of hearing that lol my mind always telling me "nope it's something more than that" 

thanks! Wow 200 symptoms curious to see how many of those I have!  And very anxious to get to a GI.  Although I pray that I don't have celiac it would be a nice relief to finally have an answer!   

I'm sorry, the link no longer states all 200 symptoms. It used to so this is a new re-vamp of what they used to have. Unfortunately I had not saved the old PDF to my computer. Kicking myself now because I wish I had & my old computer is defunct where I saved it before. Couldn't even get stuff off the back up. BTW, I recall Fibromyalgia was one of the associated symptoms. Also, with your doc, you may not have fibro at all & it may well be celiac instead. 

I very strongly agree with cyclinglady. You need a new doc! Check the Doctors section to see if there is a celiac savvy doc listed there for your area.

If anyone reading this saved the old one, I would appreciate you attaching it. Thank you!