Celiac has reversed / turned latent on gluten diet

[Zedd]

Hi,

I was wondering if anyone else on this forum has seen their blood results turn negative overtime on a normal diet?  Below are my results.  Im a male adult early 30s.

August 2018 (Normal Gluten Diet)
Anti-Gliadin IgG: 2.0 -Negative    (Negative <=6.9 U/ml)
Anti-Gliadin IgA: 1.6 -Negative    (Negative <=6.9 U/ml)
DGP IgA:  2.4 -Negative           (Negative <=6.9 U/ml)
tTG IgA: 6.0 Negative              (Negative <=6.9 U/ml)
Total IgA 328   Sufficient 68-514 mg/dL

August 2016 (Celiac Diagnosed)
tTG IgA:  486 U  - Positive                   (Negative  < 20.0)
tTG IgG 8.6 U    - Negative                  (Negative  < 20.0)
DGP IgA 31.4 U – Weak Positive         (Negative  < 20.0)
DGP IgG 31.4 U – Weak Positive        (Negative  < 20.0)
Gliadin IgA 16.0 U – Negative  (Negative  < 20.0)
Gliadin IgG 18.0 U - Negative              (Negative  < 20.0)
Wheat IgE 0.0 kU/L - Negative     (Negative  < 0.08)
Immunoglobulin A (IgA) 3.25 g/L 0.66- 4.33

 

 

 

[cyclinglady]

1 hour ago, Zedd said:

Hi,

I was wondering if anyone else on this forum has seen their blood results turn negative overtime on a normal diet?  Below are my results.  Im a male adult early 30s.

August 2018 (Normal Gluten Diet)
Anti-Gliadin IgG: 2.0 -Negative    (Negative <=6.9 U/ml)
Anti-Gliadin IgA: 1.6 -Negative    (Negative <=6.9 U/ml)
DGP IgA:  2.4 -Negative           (Negative <=6.9 U/ml)
tTG IgA: 6.0 Negative              (Negative <=6.9 U/ml)
Total IgA 328   Sufficient 68-514 mg/dL

August 2016 (Celiac Diagnosed)
tTG IgA:  486 U  - Positive                   (Negative  < 20.0)
tTG IgG 8.6 U    - Negative                  (Negative  < 20.0)
DGP IgA 31.4 U – Weak Positive         (Negative  < 20.0)
DGP IgG 31.4 U – Weak Positive        (Negative  < 20.0)
Gliadin IgA 16.0 U – Negative  (Negative  < 20.0)
Gliadin IgG 18.0 U - Negative              (Negative  < 20.0)
Wheat IgE 0.0 kU/L - Negative     (Negative  < 0.08)
Immunoglobulin A (IgA) 3.25 g/L 0.66- 4.33

 

 

 

Hi!

Were you biopsy confirmed?  

[Zedd]

Yes the biopsy showed increased IELs and patchy villous atrophy. However the biopsy also showed giardia.

I do also suffer from Osteoporosis, which made celiac seem likely given my age.

 

[tessa25]

Are you saying you never went gluten free in those 2 years?

[Zedd]

11 hours ago, tessa25 said:

Are you saying you never went gluten free in those 2 years?

That's right stayed on normal gluten diet.   To be confident im not celiac, i will do another biopsy to make sure that the villous atrophy hasn't worsened.

My case isn't rare from my research, just shows that celiac needs a more reliable test as blood tests & biopsy can be impacted by other conditions. False positives can be dangerous due to the restrictive diet and its impact on quality of live.

My ttg was well over 100, so even a very large ttg has no meaning. 

Open Original Shared Link 

"This patient demonstrated development and subsequent resolution of TTG, EMA, and DGP antibodies over a time frame of several months, with ongoing gluten consumption. We believe this to be the first documented adult case of transient seroconversion with reversion to normal of all celiac antibodies similar to the phenomenon documented in children at-risk for celiac disease.

Transient  celiac  autoimmunity has  significant  implications  for  the validity of seroprevalence studies that use  TTG  and  EMA  to  estimate celiac disease prevalence without confirmatory biopsy.  In addition, transient celiac or gluten autoimmunity could account for a  significant  proportion  of  “false positive” antibody tests in which the timing of serology and biopsy (Fig. 1) does not coincide.

This case illustrates the crucial importance of duodenal biopsy and close follow-up of those with normal biopsy results despite abnormal serologic findings. Temporary celiac autoimmunity can occur in adults, and further studies examining....."

Edited August 15, 2018 by Zedd
Typo

[cyclinglady]

This was discussed some years ago on the forum.    You might find it interesting:

https://www.celiac.com/forums/topic/85651-transient-celiac-autoimmunity-in-a-adult/

I would personally go for the repeat biopsy.  Please keep us posted!  

 

Edited August 15, 2018 by cyclinglady

[Posterboy]

On 8/15/2018 at 1:17 AM, Zedd said:

Yes the biopsy showed increased IELs and patchy villous atrophy. However the biopsy also showed giardia.

Zedd,

I think it was the Giardia it has also been shown to cause what has been termed transient elevation of tTG causing confusion with a Celiac or NCGS diagnosis.

See this UChicago page about what else can cause Villi blunting.

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

Usually cyclinglady posts the UChicao link but I don't see where she has had a chance.

Here is recent research about this phenomenon involving Giardia causing transient elevated tTG entitled "Transient elevation of anti-transglutaminase and anti-endomysium antibodies in Giardia infection."

https://www.ncbi.nlm.nih.gov/pubmed/29911457

It is either that or your celiac has gone into the silent form of the disease (if your GI symptom's) are in remission which makes sense to me.

A biopsy retest as cyclinglady noted would tell you which it is?

There is a similar thread talks talks about when (or if) when a NCGS patient becomes a Celiac patient.

I argue it is when the IEL you had goes into full blown villous atrophy and the villi become flattened not just blunted.

see this thread where fyremaker had a similar problem.

https://www.celiac.com/forums/topic/116215-first-is-was-then-it-isn%E2%80%99t%E2%80%A6-which-is-it/

I think it explains well (at least as I understand it) that blood serology recognizes the (active) antibody stage (child stage my words) of celiac disease (termed) NCGS and the villi destruction stage is (adult stage of the disease) of what is then official termed full blown celiac disease. (Not by age but by stage of development) for analogy only.

That is what the fairly recent (couple years old) columbia university research says to me anyway.

Here is a good article from the care2 site that summarizes the qualitative difference between histological (villi) damage in NCGS and Celiac patients.

https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html

I hope this is helpful but it is not medical advice.

As always 2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the grace of God,

 

[LilyR]

That is interesting.  For me, I was tested several years ago with a blood test only, and it was negative (I wasn't having stomach issue then, more of fatigue and other issues, but they checked celiac with other bloodwork at that time).  Then I had this awful stomach issue come up quick and awful last year and they did bloodwork for celiac, and that time it came back as low positive.  They did more bloodwork to follow up, and then told me I was not celiac, but gluten sensitive.  I did have an endoscopy, but they never said if they did any biopsy other than they checked something for GERD and something called Barrett's or something? That came back negative.  But the endoscopy was before the celiac bloodwork.  They never mentioned a peep about checking for celiac when they did the endoscopy.  I wonder why.  It's like they didn't think of celiac until later when a prescription for heartburn/GERD was not helping me symptoms at all.