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How Long Does it Take to Improve Numbers on GFD?


vvicin02

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vvicin02 Enthusiast

It has been two years since I have been on a GFD. I prepare my own food but my latest blood work 
shows some lowering of numbers while others are slightly above normal. I am 62 year old male and wonder if
I am doing something wrong with my diet. How long should it take to get my numbers back to normal. I have never
felt better.  Should I be concerned? The levels are low but still above normal. Nothing like it was two years ago.


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cyclinglady Grand Master

The antibodies tests were only meant to help diagnose celiac disease.  It was never intended to help determine dietary compliance.  However, it is the only non-evasive “tool-in-the-toolbox” that is non-evasive.  
 

My DGP IgA has never been normal.  Usually, I ask for testing because I can not figure if I actually had a gluten exposure or not.  I usually have many symptoms and those take forever to resolve.  My diagnosing GI never suggested that I go back for testing.  My PCP at the time was happy with my normalized ferritin and improved hemoglobin which are good indicators that healing has occurred.  He never thought, and I stupidly did not ask,  for for repeat antibodies tests.  
 

My new PCP and GI are on young and sharp.  My PCP orders tests even before I step into the office.  My GI will run antibodies tests when I ask.  
 

Here is the kicker.  My last endoscopy/biopsies  revealed healthy villi.  Guess what?  My DGP IgA was still elevated.  My GI said he went down deep and things looked good. I could even see the villi because he had the latest and greatest scope and he presented me with photos.  Why the still elevated DGP IgA?  Who knows?  It was even very elevated after I trialed the Fasano gluten-free diet and that is what prompted me to get the endoscopy.  I was going crazy looking at the numbers.  I admit I had weird GERD symptoms but that turned out to be autoimmune gastritis.

Right now, I am riding the wave.  My GI tract is feeling so good.  In fact, it is a battle to not gain weight!  So, if you feel good when you used to feel bad, and your numbers are lower, be happy.  You are doing a great job! 
 

Scott Adams Grand Master

You didn't mention how often you eat out, as that can be a big factor:

 

vvicin02 Enthusiast
11 hours ago, Scott Adams said:

You didn't mention how often you eat out, as that can be a big factor:

 

Scott - I never eat out. I make my own food. That is what concerns me. However, I think cyclinglady is onto something. I have been on GFD for two years and I feel good. My numbers are improving but not perfect - I think I can live with that. My Doctor said you cannot chase these numbers because you will go nuts. I think I am going to cool it with the blood work for awhile. I will do my best to eat well and stay awhile from gluten - it is my new normal.

Scott Adams Grand Master

The only thing I would add is that technically speaking your numbers should go down, certainly after two years gluten-free, and it may make sense to re-check what you’ve been eating, including medications, lotions, makeup, etc., to rule out a source of hidden gluten.

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    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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