Test results help

[monika.m]

Hi All,

I've been reading through the posts and a lot of confusing test results was about high/elevated DGP IgA/IgG with negative tTg. The conclusion was to have the biopsy anyway, however I yet to find a post where there is a follow-up from the individual who originally posted the question.
My test results shows the same: tTg IgA/IgG negative, IgA level normal 1.07, the normal range is above 0.7, the EMA IgA was slightly positive, the DGP IgG is positive 37 (positive above 12).
I did retest myself for EMA IgA in a different lab and it was negative. I know it is a hard test to perform and now I don't know if my original result was false positive...

I had a gastroscopy done but very poorly. I told the doctor to take at least 6 samples as per the standard, but he only took one. The gastroscopy experience was a disaster anyway...
The result was negative, but they did not even found my foveolar metaplasia, nor my polypoid lesions which I had in my previous two biopsy (2 years and 7 years ago, non of them was for celiac diagnosis). 

Do you suggest to do another biopsy with a different doctor?

I am worried that they miss the diagnosis, but I don't want to go to a strict diet when I don't really need it.
Thank you.

[trents]

Welcome to the forum, monika.m!

I would certainly seek a new GI doc who will do a more thorough job of sampling the small bowel lining. We recommend at least 4 samples be taken each from the duodenum and the duodenum bulb. Damage can be patchy.

Your positive DGP IgG indicates you may have celiac disease but it is not as specific for celiac disease as are some of the other tests. The tTG-IGA and especially the EMA are more specific. There is a possibility that if you are sure gluten causes you issues you have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease but there is no test for it. Celiac disease must first be ruled out. They share many of the same symptoms and both would require a commitment to total elimination of gluten.

What are your symptoms?

[monika.m]

13 minutes ago, trents said:

 

What are your symptoms?

Thank you for the quick reply.
My symptoms are fatigue ( I often have to take a nap in the afternoon otherwise can't function), constipation even though I eat healthy, and I am sporty, I tried everything to relieve that, nothing helped. Bloating, stomach pain, feels like I have diarrhea when I don't. When I am able to go to the toiled my stool is full of undigested food. 
My lab showed low white blood cell count, low Iron, Ca and Mg, D-vitamin levels.

[trents]

All of those symptoms and the low lab values are classic for celiac disease and the malabsorption problems that it creates. You could also trial a gluten free diet for say, three months, and see if your symptoms start to improve.

[Scott Adams]

Since your DPG level was around 3x the cut off for celiac disease it is still likely that you have celiac disease, or at the very least non-celiac gluten sensitivity. In general, however, the DGP tests have been found to have a sensitivity of around 85-95% and a specificity of around 95-98%. You may wish to try a gluten-free diet for a few months as @trents mentioned, and if your symptoms go away it would more or less confirm the diagnosis (although an official diagnosis still might require a positive endoscopy/biopsy).

[monika.m]

Thank you both for your answers. My dilemma is whether to go on a strict gluten free diet in which I need to concern about the cross contamination, or not as strict diet. The diet for true celiac patients is a life changing one, affecting every aspect of your life. I am trying to avoid gluten since my endoscopy, but I am debating to commit until I know the seriousness of my condition. 

 

[trents]

It is a misconception that if you have NCGS instead of celiac disease that you can be more lax about gluten, IMO.

And with the ambiguity of your test results to this point, you may never have a clear answer until you go all out on eating gluten free if you intend to do a gluten free trial. Minor amounts of gluten allowed will likely sabotage the experiment.

And if you are expecting to get more testing done you should not even cut back on gluten until it is all testing is complete or you will invalidate the results.

[monika.m]

Thank you for the suggestion. I decided to go to another doctor, I got an appointment in the middle of May. The main drive to see a new doctor is the fact that my endoscopy was so poorly done and I would need to get my other conditions (foveolar metaplasia, polypoid lesions) checked anyway. I will follow up in this thread what he will suggest.

 

[trents]

Keep us posted.

[monika.m]

Hi All,

An update from my side. I went back to the original gastroenterologist who sent me to gastroscopy. He said I have either celiac or maybe gluten sensitivity. Either way I need to go on a gluten free diet and we will redo my bloodwork in 2 months to see if there is an improvement.

He said no matter what the gastroscopy result said, he thinks it is celiac based on my lab results and symptoms. He also explained why we see negative result in the pathology report, basically he is on a same side as Kenneth Fine, MD in his article, we caught this early before the damage is shown in the biopsy.

 

[Scott Adams]

I think your doctor is right, and that is a great article. It's old, but I'm still in contact with Dr. Ken Fine and he is still running his celiac stool and blood test lab (Enterolab), and has a very different view on this than mainstream doctors. To him gluten sensitivity and celiac disease are all part of the same syndrome, and doctors are often seeing it at various stages, but but anyone who is sensitive to gluten and has the genetic markers could end up with full blown celiac disease at some point, and it's always best to avoid ending up there.

Dr. Fine is also controversial because of his methods--he tests for and believes that the anti-gliadin antibodies show up first in the gut in those who are gluten sensitive (he does stool testing for them), then later in the blood, and finally some end up with villi damage.