Six Years After Diagnosis - 2nd Endoscopy Results

[Chuck1004]

Hi all,

Sort of a crazy question.  Six years ago, I was sent to a GI specialist to followup on an elevated liver enzyme.  It turned out to be simple fatty liver, although the specialist ordered a battery of tests that were suggestive of celiac disease.  I was non-symptomatic at the time, followed up with an endoscopy and biopsy, was diagnosed as a celiac, followed up six months later after adopting a gluten free diet, had normal blood labs, and was told to maintain it indefinitely.

Six years later, I just had a followup endoscopy from my new GI doc to followup on the celiac progression.  They thought I had Barrett's esophagus after the endoscope and the office called at 4:55 on Friday with my test results.  It was only the secretary left and she was reading from their letter that was being sent out to me.  I didn't have Barrett's esophagus and everything else looked fine, and I asked her how the celiac disease read.  She was a bit over the place, but she said, "It says no celiac."  I told her I was diagnosed six years ago.  She said it looked like there was a word missing in the letter and she'd have to followup with the doctor on Monday.

So I'm half wondering if the point of the letter was since adopting the gluten free diet and maintaining it for six years, there's no active traces of damage from celiac disease, or if it's possible I was misdiagnosed all those years ago, especially given I'm non-symptomatic.  At the very least, I have the weekend to fantasize about going back to my favorite pizza place!

These were the relevant results I received six years ago.  Could anyone give guidance as to how they read, and especially how your followup endoscopies may have gone?

January 2012-

ANTINUCLEAR ANTIBODY	see comment
Positive at 1:40. Negative at 1:80 and 1:160 *** Normal Value: Negative at 1:40 and 1:160 ***

ANA PATTERN	SPECKLED
A positive test for antinuclear antibody does not necessarily identify a patient as having a systemic connective tissue disease. Serum from 25% of healthy individuals yields a positive test for ANA at a titer of 1:40 and serum from 5% of healthy individuals yields a positive test at a titer equal to or greater than 1:160. Serum from 95% of patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) and 75% with Sjogren's syndrome (SS) yields a positive test for ANA in titer equal to or greater than 1:40. The test for ANA is positive at titers equal to or greater than 1:160 in about 90% of patients with SLE and SSc and about 70% with SS. Mandakolathur R. Murali, M.D., Director Clinical Immunology Laboratory Method is fluorescent non-infectious agent antibody test with microscopic evaluation.
Anti tTG IgA AB	45.63 U/mL	0 - 15 U/mL
Positive Result checked

February 2012 - biopsy results

FINAL PATHOLOGIC DIAGNOSIS:
A. DUODENUM BIOPSY:
Duodenal mucosa with increased intraepithelial lymphocytes and normal villous
architecture, (see note).
Note: A CD3 immunostain demonstrates increased intraepithelial lymphocytes
throughout most of the architecturally preserved villi. Although non-specific,
in conjunction with the known positive serum IgA TTG, the findings support a
diagnosis of celiac disease.

September 2012, April 2013 - lab followup

tTG AB, IGA

<1.2 U/mL

<4.0 Negative U/mL

 

[GF-Cheetah Cub]

If you were diagnosed 6 years ago, and have maintained a gluten free diet, your blood tests and endoscopy are supposed to be normal.    It means your body has healed, but Celiac is a lifelong disease, you can not go back to eating gluten.   Sorry.

My daughter is also a non-symptomatic celiac.    She was diagnosed by blood test, followed by the endoscopy.   We further confirmed that she has Celiac gene.   Until they found us a cure.    My daughter can not eat gluten, even though she is non-symptomatic.

[Chuck1004]

That’s very helpful.  As I wasn’t able to talk to the doctor it turned into a game of telephone and all I got was “no celiac.”  I was at the very early stages then, it looks like, and have maintained the diet, so that answers my question.  As I read the initial biopsy results as almost a diagnosis of exclusion and never had the genetic test I was curious how to interpret the message.

[kareng]

If you have been been gluten-free, you shouldn't have no evidence of Celiac now.  That does not mean you don't have Celiac.  

As an example, if you have high blood pressure and take medicine to lower it, you don't stop taking the medication because your blood pressure is now good.  In Celiac, food is the medication.  You don't stop the gluten-free diet just because your intestines have healled.  

[Chuck1004]

I suppose it makes sense that it would heal fully given how little damage I had in the first place!

[lisas11lisa]

You and I were diagnosed at the same time...I too just had another endoscopy and colonoscopy...I too have been diagnosed.with Barratts Esophagus..I really do have it though...My intestines look good..no visible sign of Celiac..BECAUSE I AM DILIGENT!!..Please DO NOT GO BACK TO EATING GLUTEN..we are supposed to heal....My Dr said.."this is what we want to see..so many people cheat..and don't read labels"..I personally will never knowingly eat gluten EVER AGAIN...Goodluck.

 

[Chuck1004]

I'm sorry to hear about your diagnosis but I'm hoping it didn't show any precancerous cells?  I have a friend who has it as well and it's regular endoscopies.  From what I read few people who have it see it develop into anything.   Since I was told I was not a celiac maybe I have it after all!

It's funny you say that.  I know of at least one celiac who eats gluten free on Mondays, Wednesdays and Fridays.   I suppose that's like being allergic to peanuts but partaking once or twice a week??  I've only purposefully cheated a couple of times in six years.  Knowing I was non-symptomatic and that any contamination would essentially fire up my immune system anyway, if I was out of the country or on vacation I would confine my cheating to the same timespan, get it out of my system, and then get back on the wagon.  I had actually been nervous because a restaurant I frequented was apparently not as contamination free as I thought, but luckily, no harm done.

[cyclinglady]

I also just had a recent repeat endoscopy after five years.   The “latest and greatest” camera revealed a healed small intestine (pathologist’s report also supported this fact).  This time I was experiencing some issues (had no GI issues at the time of my diagnosis), but it turned out to be chronic autoimmune gastritis.   It is so nice to have confirmation that I am adhering to the gluten free diet.  

I think you were lucky that your celiac disease was caught in the early stages before causing further damage to not just your gut leading to intolerances (e.g. lactose or soy) or osteoporosis, but in possibly avoiding other autoimmune issues.  

Keep up the good work!  ?