Could it be celiac?

[Ferguston]

Hi there!

I've been having some problems, some are recurrent, some are new.

The recurrent problems are hepatomegaly with NASH, and splenomegaly.

Some new problems, like more anxiety and something that I never had, but now I did, are panic attacks. Also fast heartbeat from time to time. The panic attack seems that it has dissapeared since I went gluten free, also my asthma and allergy to dust feels better, still using my inhaler, but it feels clearer with less mucus as time passes, and my nasal congestion is way better. (I'm gluten free for a month+)

I also had digestive problems, like acid reflux, bloating and belching.

Since I went gluten free, my liver blood tests have improved, my ALT went back to normal, and my AST is only slightly raised to around 80. Also, I did the test "calprotectin" and it does show a mild inflamation. But it's only 69, not over 100, to be considered something else.

My doctor since then had order some blood tests to test for celiac, I'm still waiting for anti-endomysium. But the other ones came back and I would like to ask if someone run into stuff like this, I know that after going gluten free blood tests can give negative. But I can not go back to eating gluten, since I'm feeling better, don't want to live thru another panic attack.

AGA IgA - 1.8 U/ml (negative)

AGA IgG - 12.5 U/ml (positive)

tTG IgG - 2.0 U/ml (negative)

Also, not deficient in IgA, my IgA is 2.61 g/L.

Did someone who was celiac, had seen or experienced those kind of results?

[Ferguston]

Also, forgot to say that I have for a lot of years now, something that looks like dermatitis herpetiformis on my face, it does not have those liquid filled postules, but it does burn, and sometimes theres liquid coming out of the skin and then it solidifies, just as a scar would do, also I have a lot of headaches recently, but this might be the body healing, since I also had vitamin D deficiency.

[cyclinglady]

Sounds like you are healing.   That is good, right?  
 

Being on the gluten free diet does impact the testing causing negatives.  The tests look for antibodies.  If you are not eating gluten (in as little as 2 weeks and you actually have celiac disease), You would not make antibodies specific to celiac disease.    The AGA tests have not been in use in the US for a while.  They are not as accurate.  
 

https://www.cureceliacdisease.org/faq/is-the-anti-gliadin-antibodies-aga-test-reliable-for-diagnosing-celiac-disease/

 

[Ferguston]

Yes, that is good. Healing is always a good thing.

Did not know that in just as little as two weeks the body stops making antibodies. It's been well over a month for me. Will be posting here the results once the anti-endomysium test is done. Heard they are as accurate as the tTG but they last longer in the body.

[cyclinglady]

The “in as little as two weeks” fact is possible, but not common.  
 

Just to let you know, I have never had a positive on the TTG or EMA.  I test positive to only the DGP IgA (complete celiac panel taken many times) and am biopsy-confirmed.  Know that some celiacs (up to 15%) are seronegative.  So, even if your EMA result is negative you can either continue the gluten free diet or do a short 2 week challenge for an endoscopy to obtain small intestinal biopsies.  

It does sound, based on those improved lab tests (e.g. liver), that your body likes the gluten-free diet.  

 

Edited July 4, 2020 by cyclinglady

[Ferguston]

Now this is something I would have never found searching on the internet. Will see what the doctor has to say about biopsy once I'll meet him. Maybe looking at my history he might not need to (I hope so, biospy is not something that I'm too happy about), but given how biopsy is a must for most adults, I won't escape it.

[Ferguston]

Update: I've been to the doctor, now he says I might possibly have celiac, and he also said to continue to have a gluten free diet, also I should come back for screening to see how my liver and sleen are doing. I might think that he wants to see how I'm responding to a gluten diet.