Celiac Or Not? I Am Going Insane Here...

[Matt268]

Ok. I am 30 years old and for the past 2 years I have been dealing with a lot of bowel issues that don't seem to ever go away.  I noticed that I was having a lot of different types of stool and a lot of bowel irritation.  I went to the Doctor to have them run tests and no one could find anything so they called it IBS - I never had this issue in my life until 2 years ago.The issue kept going and I couldn't seem to shake it - in fact, I started feeling light headed and experienced a lot of confusion and fatigue.  I decided to go back to the Doctor who tested me for a lot of different issues, some of which included Hep. C., Mono (which he said I had at one point but not currently), white blood cells, MRI (for the head stuff) and a ton more stuff which never yielded results.  I even had a colonoscopy/endoscopy (they found nothing but mild gastritis).  The Doctor finally said that he wanted to test me for Celiac.  I was tested and then diagnosed with Celiac Disease due to a blood test that showed a reaction to Gliadin Peptides.  I had a second Doctor take a look and this doctor said she was going to test for the "Celiac gene".  According to the second Doctor, I didn't test positive for the gene - therefore I did not have Celiac.  So I went back to consuming Gluten. This all happened about a year and a half ago.

 

Fast forward to about a week ago - the symptoms have not stopped for two years, sometimes I feel that they are worse.  I went to a new Doctor, in a completely different state who has looked at my records and is convinced that I have Celiac or some variant, despite the test that said I don't have the gene.

I am at a loss here and I have no idea what to do.  I feel like I can't even live a normal life anymore because I always feel sick.  I am sick and tired of not knowing what is wrong with me and whether or not I actually have Celiac or some form of Gluten intolerance.  Can anyone help me here?

 

 

[ravenwoodglass]

There are celiacs that don't have the usual gene that are associated with celiac. Which blood tests were you positive for? Some of those are pretty specific to celiac and a couple can be seen with other issues.

If you are done with celiac related testing you have nothing to lose by giving the diet a good strict try.

[kareng]

Ok. I am 30 years old and for the past 2 years I have been dealing with a lot of bowel issues that don't seem to ever go away.  I noticed that I was having a lot of different types of stool and a lot of bowel irritation.  I went to the Doctor to have them run tests and no one could find anything so they called it IBS - I never had this issue in my life until 2 years ago.The issue kept going and I couldn't seem to shake it - in fact, I started feeling light headed and experienced a lot of confusion and fatigue.  I decided to go back to the Doctor who tested me for a lot of different issues, some of which included Hep. C., Mono (which he said I had at one point but not currently), white blood cells, MRI (for the head stuff) and a ton more stuff which never yielded results.  I even had a colonoscopy/endoscopy (they found nothing but mild gastritis).  The Doctor finally said that he wanted to test me for Celiac.  I was tested and then diagnosed with Celiac Disease due to a blood test that showed a reaction to Gliadin Peptides.  I had a second Doctor take a look and this doctor said she was going to test for the "Celiac gene".  According to the second Doctor, I didn't test positive for the gene - therefore I did not have Celiac.  So I went back to consuming Gluten. This all happened about a year and a half ago.

 

Fast forward to about a week ago - the symptoms have not stopped for two years, sometimes I feel that they are worse.  I went to a new Doctor, in a completely different state who has looked at my records and is convinced that I have Celiac or some variant, despite the test that said I don't have the gene.

I am at a loss here and I have no idea what to do.  I feel like I can't even live a normal life anymore because I always feel sick.  I am sick and tired of not knowing what is wrong with me and whether or not I actually have Celiac or some form of Gluten intolerance.  Can anyone help me here?

 

 

Without the gene, its not likely that you have Celiac disease.

 

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I would get all the blood tests, gene tests & pathology report from the endoscopy.  See how positive the blood test was.  IF the blood test is only slightly elevated and the endoscopic biopsies are negative, maybe you don't have Celiac disease.  

 

 

 

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You be non-Celiac Gluten Sensitive.  If not eating gluten makes you feel better, then stop eating it.  

 

 

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[Matt268]

Thanks for the response.  I have had an antibody test, I just can't remember exactly what it was called and I don't have the paperwork with me right.  The first Doctor came to the Celiac conclusion based on my antibody test.  I will try to find the paperwork and post the test.

[Matt268]

The problem that I think I have here is that the colonoscopy/endoscopy was done prior to the antibody test that was done.  I am not sure if the Gastroenterologist checked for Celiac or not.  Perhaps I need to have another procedure done?  That would be a pain.

[GFinDC]

Here's a list of the tests.

 

If you are still eating gluten you may as well get the antibodie tests done again.  It's been two years and things can change in 2 years.   Some people don't develop celiac disease until later in life, some have it when very young.  It can start at any time.  Sometimes they don't do all the tests.   That's bad because people can be positive on one test and negative on another.  When they did the endoscopy they should have taken between 6 to 8 biopsy samples for microscopic examination.  You should get copies of your test results for your personal records.  Tests can be flubbed sometimes and no test is absolutely perfectly 100% reliable.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

If you turn out to be negative on all the tests, then it could be NCGI (non-celiac gluten intolerance).  There aren't any standard tests for NCGI yet.  But more people have it than have celiac disease.  IF you get better not eating gluten then that means something.  NCGI or some other reaction is causing a problem.  It's not good to keep eating things that injure your body.

[Matt268]

Here's a list of the tests.

 

If you are still eating gluten you may as well get the antibodie tests done again.  It's been two years and things can change in 2 years.   Some people don't develop celiac disease until later in life, some have it when very young.  It can start at any time.  Sometimes they don't do all the tests.   That's bad because people can be positive on one test and negative on another.  When they did the endoscopy they should have taken between 6 to 8 biopsy samples for microscopic examination.  You should get copies of your test results for your personal records.  Tests can be flubbed sometimes and no test is absolutely perfectly 100% reliable.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

 

If you turn out to be negative on all the tests, then it could be NCGI (non-celiac gluten intolerance).  There aren't any standard tests for NCGI yet.  But more people have it than have celiac disease.  IF you get better not eating gluten then that means something.  NCGI or some other reaction is causing a problem.  It's not good to keep eating things that injure your body.

Thank you for your help.  I will make sure to ask specifically for those tests when I go to see my Doctor.  I will update when I find out.

[NoGlutenCooties]

Hi Matt and Welcome to the Forum -

 

I agree with the others that you should have the full Celiac panel of blood tests done again - as long as you are still eating gluten.  While some researchers are now claiming that you cannot have Celiac if you don't have at least one of the two known genes, there are people who do not have either of those genes who have been diagnosed with Celiac.  (I think some researchers in Europe are researching a third gene that may also predispose a person to Celiac.)  So not having either of the two known genes doesn't completely rule it out.  Non-Celiac Gluten Intolerance is also a possibility - in which case the blood tests will also come back negative for Celiac but a gluten-free diet will make your symptoms go away.  There is no reliable test for NCGI yet.