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Any thoughts on my results over the years? I'm at a lose.


kyle2265

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kyle2265 Newbie

10 years ago I got tested for celiac disease because I was having a lot of IBS type symptoms since my late teens to early 20s. Below were the results.

tTG IgA : 24 U/mL Ref Range: 0 - 15
DGP IgA : 13 U/mL Ref Range: <=19
NOTE: <20 Units = Negative
NOTE: 20-30 Units = Weak Positive
NOTE: >30 Units = Postive

total IgA    309 mg/dL       Ref Range 69 - 309 mg/dL

Gastro said, yup you most likely have celiac so did a biopsy to confirm. Biopsy came back negative so he told me I don't have celiac. Fast forward 2 years we did the bloodwork again.

tTG IgA : 16 U/mL Ref Range: 0 - 15
DGP IgA : 14 U/mL Ref Range: <=19
NOTE: <20 Units = Negative
NOTE: 20-30 Units = Weak Positive
NOTE: >30 Units = Postive

total IgA    270 mg/dL       Ref Range 69 - 309 mg/dL

Gastro said bloodwork looks fine. Fast forward another 5 years and the bloodwork was done again and also another Endoscopy biopsy (The endo was to rule out another complaint but he did another celiac biopsy while he was there. Negative again.

total IgA    305 mg/dL       Ref Range 69 - 305 mg/dL

TTG IgA2.8 U/mL<7=Negative, 7-10=Equivocal, >10=Positive U/mL

Gliadin IgA2.8 U/mL<7=Negative, 7-10=Equivocal, >10=Positive U/mL

 

Based off all the labs and two negative biopsies, I'm sure it's fairly face to say I don't have celiac, correct? I've been diagnosed with (IBS) since the initial biopsy came back negative. Now (starting two years ago) I began having sensory nerve issues. Ended up getting a skin biopsy done and was told I have Idiopathic Small Fiber Neuropathy since all other tests that have done have came back normal. I'm wondering if gluten could still be the culprit. Any ideas?


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trents Grand Master
(edited)

Yes. You could have NCGS (Non Celiac Gluten Sensitivity). It shares a lot of the same symptoms with celiac disease, including neurological problems, and is 10-12x more common than celiac disease. There currently is no way to test for NCGS but to first rule out celiac disease. The antidote is the same, namely, elimination of gluten from the diet for life.

Some celiac disease experts believe NCGS can be a precursor to celiac disease.

Edited by trents
Scott Adams Grand Master

To me the fact that you had a positive tTG IgA twice before:

  • tTG IgA : 16 U/mL Ref Range: 0 - 15
  • tTG IgA : 24 U/mL Ref Range: 0 - 15

tells me that you likely have celiac disease, no matter what the biopsy results show.

If I were you I'd try a gluten-free diet and see if you get symptom relief. If so this would be further confirmation.

 

kyle2265 Newbie

@trents and @Scott Adams - Thanks for the feedback. I started on a Gluten free diet two days ago now to give it a shot. Going to go for at least 3 months to see if it helps anything. Also, here is the results of my most recent Endoscopy in 2019. Interesting the "Fragments of antral and fundal mucosa with scant chronic inflammation"

A. Duodenum, biopsy:
–Essentially unremarkable small bowel mucosa.
–No dysplasia, infectious organisms, or celiac sprue identified.
 
B. Gastric biopsy:
–Fragments of antral and fundal mucosa with scant chronic inflammation.
–No active inflammation or atypia identified.

trents Grand Master

Kyle, you need to read this. Going truly gluten-free is not as easy as most people think when they start the journey:

 

kyle2265 Newbie
19 minutes ago, trents said:

Kyle, you need to read this. Going truly gluten-free is not as easy as most people think when they start the journey:

 

I'm actually starting with the AIP (Autoimmune protocol) diet. Really giving it my best shot over 90 days, then start adding some stuff back in (not gluten though, that will be the last thing just to see if I have any reactions). I'll give that a read for sure. 

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    • trents
      So, is their reasoning for doing another biopsy after you've been gluten free for awhile to get a comparison of before and after? In other words, there should be healing of the SB lining if you go gluten free for awhile if you have celiac disease?
    • trents
      Welcome to the forum, @Tazzy11! Yes, your DGP-IGG test is positive. It means you could have celiac disease. But there are other possible causes for an elevated DGP-IGG count. I note that your TTG-IGA was not positive. The TTG-IGA is considered the chief celiac antibody test and a bit more reliable than the DGP-IGG. But let me ask you an important question. Prior to the blood draw, had you already begun to limit your intake of gluten? Also, were these the only two tests ordered to check for celiac disease? A physician should always order what we call the "total IGA" test (it goes by other names as well) to check for IGA deficiency. If you are IGA deficient, the scores for individual IGA celiac antibody tests, such as the TTG-IGA will be falsely low. By the way you spelled "coeliac" I judge you must be in the UK. There are several other antibody tests that can ordered when checking for celiac disease in order to get a more complete picture. Here is an article outlining the various tests:  
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      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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