Positive tTG, negative biopsy, then a negative tTG?

[Eric Madsen]

I am a 40 year old male and would like some help from all the public experience that is on this site.  I'm not quite desperate yet, but getting very, very close!  Sorry for the long post, but as I've heard, celiac troops are used to a lot of history review.

 

I have had intestinal problems for about 20 years.  I had my gall bladder removed when I was 25, doctors assumed that was causing some problems with keeping some foods down and pain radiating from my belly button around to about the middle of my back. 

I've been going to the doctors for about 5 years now for different problems, mostly with no results.  My symptoms range from joint pain, abdominal pain, headaches, severe irritability and fatigue.  

2 years ago I was diagnosed with diverticulitis after an emergency room visit, x-rays and a colonoscopy.

The main reason for my visits in the last 3 years was joint pain.  All 7 of my aunts and uncles have some sort of autoimmune disease (non celiac disease, diagnosed anyways).  I have been tested for RA numerous times with always a negative result.  One doctor actually told me "You're just getting old" as a reason for my joint pain.  

My latest visit about 6 months ago was different.  I went in to a new, young doctor and told them to run whatever tests they could to get some answers and that I wasn't leaving without some answers.  She was awesome!  She spent a lot of time with me reviewing all past visits with the different doctors, family history and a physical exam.  

She ordered a biopsy of the rash on my butt (which turned out to be DH), other doctors had that rash labeled as something else, ranging from yeast infection to psoriasis and even a "touch" rash, I was told that if I didn't touch it, it would go away.  

My current situation is as follows:  After about what seemed to be 5 gallons of blood drawn, 4 x-rays and an MRI, I had a positive tTG (reading of 99.8). Was told to go gluten free right away, which I later found out was very ill advised, as I hadn't had any other celiac testing done.  I was referred to a GI specialist for an upper endoscopy.  My biopsy came back normal.  The doctor seemed confused by this and ordered another round of blood work.  This time the tTG came back negative.  Reading of 1.2 this time.  My question (finally!) is this: Could I have a reading as high as 99.8, all the various symptoms and the DH but then come back with a negative result???  I did feel better after being off gluten, granted, it was only for about 3 weeks because of the testing.  I'm so confused and disheartened with the latest test results.  Any help would be appreciated.  Thanks in advance!!!

 

[ravenwoodglass]

If you got a diagnosis of DH no further testing is needed. A diagnosis of DH is a diagnosis of celiac. You can get back on the diet and start healing.

[cyclinglady]

Antibodies can remain in your system for months to over a year....or go away within two weeks.  It sounds like you were advised to go gluten free and that could have caused your TTG to decrease.  Does your GI know you had been gluten free?  

Some folks with DH have no intestinal or it can be patchy.   The antibodies are primarily in the skin.    If you know that rash was DH, then you have celiac disease.  

[Eric Madsen]

I had been on gluten for 3 weeks prior to retaking the blood test for the second time.  I had only been on it for about 10 day before having the scope done.  Sounds like I may need to see a different doctor, as I'm the one who had to tell them about the need to ingest gluten before these tests.  Thanks for the replies.  I have messaged dermatologist to make sure on the DH diagnosis, but I'm almost positive it's been confirmed, otherwise I don't know where I would have heard of it.  Is it normal to get a DH diagnosis first and then have at least three doctors take you through more celiac testing?  My DH testing was the first thing I got back.  

 

[cyclinglady]

If a dermatologist did a skin biopsy and the result was positive for DH, then you have celiac disease.  No need for GI testing at all.  

Again, NO ONE can say FOR CERTAIN how fast antibodies build or decline.  That is why the University of Chicago and other celiac centers take a conservative approach.  Their  guidelines for gluten ingestion are long, for example 2 to 4 weeks prior to an endoscopy.  Some people are going to develop damage faster than two weeks and other might take a month.  No one is really studying this stuff in detail.  So best to take a conservative approach.  Some patients can not take a gluten challenge for that length time and are willing to take the risk of a negative test (odds are that if you are getting severe symptoms, damage is being done, but let’s say someone like me, who had no GI symptoms, it could be a bit questionable).  

Again, it sounds like your dermatologist took an appropriate biopsy.  Confirm it, and then go gluten free.  

(Just tossing this in for the heck of it....I had my gallbladder out too as it was non-functioning.  After that I did not have GI issues, but really I still had celiac disease.  celiac disease is like a chameleon.  Symptoms can wax and wane.)