New diagnosis based on igg

[RedRose18]

Hi folks - I'm new to this and would welcome some input from veterans. I went to the Dr recently with pelvic/abdominal pain, which is possibly due to chronic constipation, but he ran thyroid and celiac tests as well. I eat a fairly low gluten diet due to pcos, which he didn't ask about prior to testing, and the celiac tests came back mostly negative, with the ttg-igg being slightly positive. He said I have celiac, and referred me to a dietician. 

Based on the reading I've done so far (this was 4 days ago), I would have expected him to either have an endoscopy scheduled or refer me to a GI specialist. Should I be pushing for those? I hate to completely give up gluten if there's a chance this isn't a correct diagnosis. I appreciate any guidance you could offer!

Here are my test results:

Endomysial Ab: negative

IgA: 89 mg/dl (Reference Range: 47-310)

Tissue Transglutaminase IgA: <1 units/mL (<4 no antibody detected > OR =4 antibody detected)

Tissue Transglutaminase IgG: 7 (<6 no antibody detected > or = 6 antibody detected)

 

 

[cyclinglady]

Your reading about how celiac disease is diagnosed  is correct.  Normally, you should probably consult with a GI when you get a positive on a celiac test.  It is just slightly positive, so the test may be a false positive.  Consider getting a second opinion or a GI consult, considering you were gluten light.  You might need to do a gluten challenge and then retest.  

Continue to consume gluten daily until all testing is done if you go this route.  This is critical.  

I wish you well.  

[RedRose18]

Thanks for confirming my thoughts. I'll definitely be pursuing verifying the results in some way.

[Awol cast iron stomach]

Follow Cycling Ladies advice to keep gluten in your system until the scopes are done. I did not enjoy a challenge, to call it a challenge is an understatement.

[Mesa]

I had a positive deamidated IGG- 33 (reference range 0-20) with everything else remaining negative.  I had the endoscopy last week and got the results yesterday-  I do not have Celiac Disease.  So I would definitely recommend doing the gluten challenge with endoscopy as none of the blood tests are 100% accurate.

I will need followup as the high number puts me into the latent celiac category with a risk of developing it down the road, but i ended up in the small percentage of people who test positive but don't have celiac disease.

Good luck.

[cyclinglady]

1 hour ago, Mesa said:

I had a positive deamidated IGG- 33 (reference range 0-20) with everything else remaining negative.  I had the endoscopy last week and got the results yesterday-  I do not have Celiac Disease.  So I would definitely recommend doing the gluten challenge with endoscopy as none of the blood tests are 100% accurate.

I will need followup as the high number puts me into the latent celiac category with a risk of developing it down the road, but i ended up in the small percentage of people who test positive but don't have celiac disease.

Good luck.

Thank you so much for letting us know.  Your post is bound to help someone who has comparable results.  

Are you going to trial the gluten-free diet?  It might help with your current issues (migraines, osteoporosis, etc.). Even consider an AIP diet to trial.  I honestly think a non-processed Foods diet is what most people need.  Real food.  All those chemicals and additives must impact many people (like me).  Do not forget to exercise!  

i wish you well.  ?

Edited February 13, 2020 by cyclinglady

[RedRose18]

Just an update - I'm currently waiting on the biopsy results. The GI doc agreed that the tests weren't necessary strong enough to be certain, but at the same time, she's been putting confirmed celiac on every visit summary, including the one for the egd, so not sure what she really thinks. ? Hopefully I'll know more soon.

[Mesa]

Cycling lady - I plan on keeping gluten in my diet for now while continuing to be monitored.  Already trialed gluten-free for 5 months last year with no noticeable effect.  And yes, I agree non processed foods are much healthier.

Rose, good luck with the biopsy results.  I hope you have them soon so you can start moving toward feeling better!  Whether that means going gluten free or crossing it off your list and continuing to investigate your intestinal issues and finding a resolution.

 

[Fenrir]

13 hours ago, RedRose18 said:

Just an update - I'm currently waiting on the biopsy results. The GI doc agreed that the tests weren't necessary strong enough to be certain, but at the same time, she's been putting confirmed celiac on every visit summary, including the one for the egd, so not sure what she really thinks. ? Hopefully I'll know more soon.

Well, if you are positive on TTG, even weak positive it's something like a 98% chance you have Celiac Disease. So odds are that it is Celiac, the EGD is just to make sure that the 2% isn't something else. 

[cyclinglady]

1 hour ago, Fenrir said:

Well, if you are positive on TTG, even weak positive it's something like a 98% chance you have Celiac Disease. So odds are that it is Celiac, the EGD is just to make sure that the 2% isn't something else. 

I think you might be mis-informed.  Rose had a slightly positive TTG IgG and a normal Immunoglobulin A level.  This complicates her her path to diagnosis.  Slightly raised levels can be due to other illness.  She is fortunate that her doctors ordered an endoscopy.  

[Fenrir]

17 minutes ago, cyclinglady said:

I think you might be mis-informed.  Rose had a slightly positive TTG IgG and a normal Immunoglobulin A level.  This complicates her her path to diagnosis.  Slightly raised levels can be due to other illness.  She is fortunate that her doctors ordered an endoscopy.  

Actually, no the TTG IgG has a specificity of 96% when total IgA sufficient & 98%+ when IgA insufficient.

So there by be a 2-4% chance of some other cause but that's why we generally get EGDs done.

 

[cyclinglady]

No, her chances are much lower getting a celiac disease diagnosis, but not impossible.  Please review Rose’s post.  She is not IgA deficient.  She had a negative EMA and TTG IgA.  Unfortunately, she was also on a low gluten diet at the time of her blood draw.  That complicates things even more.  

This study shows that the possibility of  her having celiac disease is very low (excluding the low gluten diet).    I am not trying to discourage her since I had a very uncommon test result.   I am so glad she is getting an endoscopy.  Most people would have been left in diagnostic limbo land.  

https://www.ncbi.nlm.nih.gov/pubmed/28437323

Old forum member, Jebby wrote this on her blog.  She is a Pediatrician who also celiac disease.  

http://www.jessicamaddenmd.com/JESS-Blog/May-2017/The-Alphabet-Soup-of-Celiac-Blood-Testing

“But, the TTG-IgG is not as specific as the TTG-IgA  for celiac disease, and in a recent study many subjects with a normal serum TTG IgA but elevated TTG IgG did not actually have celiac disease.  According to the University of Chicago Celiac Disease Center there are other diseases that can cause elevated TTG antibodies, including Type 1 diabetes, Hashimoto’s thyroiditis, inflammatory bowel disease, and autoimmune liver disease.”

https://neurology.testcatalog.org/show/TSTGP

“The finding of tTG IgG antibodies may indicate a diagnosis of celiac disease, particularly in individuals who are IgA deficient. For individuals with moderately to strongly positive results, a diagnosis of celiac disease is possible and the patient should undergo a biopsy to confirm the diagnosis.”

 

[RedRose18]

My doctor said the biopsy showed no sign of celiac, but I have no additional information beyond that, so I'm waiting for additional clarification on why she said to eat gluten free if that's the case.