Possible Celiac- about to have endoscopy

[LuluMurph]

Hi everyone,

I’m new to this website and Celiac’s. My doctor ordered a blood test for celiac’s last month when I mentioned a few of the symptoms I was experiencing.

My TTG IgA came back as a 10 with the lab results saying anything above 4 was positive. However, it came back negative for EMA. My doctor ordered an endoscopy based on the results (the endoscopy is next week). I’m not really sure what to expect though. After researching, I notice that people often have way higher TTG IgA than I did. So I don’t know if anything else could have caused my positive result on the first test.
 

My symptoms are chronic fatigue, spastic bowel movements about three times a month, and canker sores once or twice a month. Last year, I also developed an issue where I burp all the time (so much so that it is embarrassing). No amount of gas-x or antacids help with that symptom either. 

I was diagnosed with IBS when I was in college four years ago, but never even knew about Celiacs until my new doctor  suggested it last month.

Does anyone have a similar story or can prepare me for what to expect? Thanks!

[cyclinglady]

Hi!

I only had one positive on the celiac panel, the DGP IgA.  My TTG and EMA tests were normal.  My endoscopy/biopsies found some pretty severe damage.   The result on your blood panel, does not necessarily correlate with intestinal damage.  It is good that you are moving forward with the endoscopy.  

Keep eating gluten until you have had the endoscopy/biopsies.  This is critical!  

In my opinion, IBS means “I Be Stumped!”  

Jeep us posted.  Your follow-up can help someone else.  ?

 

[Whitepaw]

Love the " I Be Stumped!"

I only had a slightly high score, and I did have some burping, reflux, and bloating. And yes, it was Celiac. I had a "last supper" at an Italian restaurant, and enjoyed the bread, the week before my scope.

The scope is easy. Just nothing to eat or drink the night before, and a light anesthetic.  It's a quick procedure, maybe 15-20 minutes, and only some grogginess afterward. 

[KatHow]

Hi Cyclinglady & Whitepaw,

I have a question, will or have your intestines repaired themselves or is this something that will get worse or stay the same?

Sorry, it's a pretty invasive question. I'm waiting for my blood test results to come through.

Also, when you have an endoscopy do they completely knock you out?

I'm 36 and my first time in hospital was 3 years ago and I've never had surgery, so I'm completely new to all these procedures.

My husband keeps telling me to stop self diagnosing, but I'd just like to have all the facts.

Also, I'm in Australia so i don't know if that makes a difference to the endoscopy procedure.

Thanks so much!

Kat

[Whitepaw]

Hi Kat, 

Good questions.  I was terrified,  as I hate being knocked out and have a low threshold  for medication  (low tolerance). You get what's called twilight sleep, where you are essentially knocked out from your perspective,  but still able to respond, (like in a deep sleep) if asked questions  or asked to reposition.  However, I'm pretty sure those 2 won't apply, as the test is so short.  Also, before my test, the Dr. placed a plastic piece in the front of  my mouth.  Again, no big deal.  I was surprised they only had me remove upper body garments.  I tolerated the anesthesia very well, no problems. Just napped when I got home, but was alert all the way home. 

Yes, my gut healed, but I subsequently developed other food intolerances  (a few years later). I tend to eat the same thing, not varying foods, so that may play a role. 

Looking back, I'd say the endoscopy was about the easiest procedure I've had done, and I haven't had that many. 

Please dont hesitate to ask, and you can always message if you dont want to post something publicly. 

[cyclinglady]

Not sure how health provider will handle your endoscopy, but mine have all been good experiences.  

A repeat endoscopy some five years later revealed healthy intact villi in my case.   Yes, you can heal!  Many celiacs do not heal, but it is because they often get hidden gluten exposures despite their best efforts or they refuse to do the diet.  My personal approach is to avoid processed gluten-free foods as much as possible and to only eat at dedicated gluten-free restaurants.   This is pretty good advice especially during the first year to help expedite healing, but there are no studies to prove it.  Keeping a food journal is helpful as many celiacs have developed additional food intolerances that often resolve once healed (or not).  

Watch this video by Dr. Fasano a leading celiac disease researcher (world-wide).  It is very good at explaining celiac disease and autoimmune disorders.

https://m.youtube.com/watch?v=wha30RSxE6w

 

[Jim Hess]

On 10/10/2019 at 11:52 PM, LuluMurph said:

Hi everyone,

I’m new to this website and Celiac’s. My doctor ordered a blood test for celiac’s last month when I mentioned a few of the symptoms I was experiencing.

My TTG IgA came back as a 10 with the lab results saying anything above 4 was positive. However, it came back negative for EMA. My doctor ordered an endoscopy based on the results (the endoscopy is next week). I’m not really sure what to expect though. After researching, I notice that people often have way higher TTG IgA than I did. So I don’t know if anything else could have caused my positive result on the first test.
 

My symptoms are chronic fatigue, spastic bowel movements about three times a month, and canker sores once or twice a month. Last year, I also developed an issue where I burp all the time (so much so that it is embarrassing). No amount of gas-x or antacids help with that symptom either. 

I was diagnosed with IBS when I was in college four years ago, but never even knew about Celiacs until my new doctor  suggested it last month.

Does anyone have a similar story or can prepare me for what to expect? Thanks!

Do not worry at all about the upper endoscopy procedure.  I felt nothing 7 weeks ago with an anesthesiologist administering propofol (Diprivan).  Insist on an anesthesiologist with proper monitoring.

[cyclinglady]

@LuluMurph

Hey, your TTG score WAS high!  Lab ranges vary across the country or world.  You probably have been reading about results that are “off the charts” or over 100.  Usually that bottom of the range is then 20.  

[KatHow]

Thanks for yoir help guys!

Much appreciated!

[LuluMurph]

Thanks so much for all your insights and help! I had an endoscopy and colonoscopy this morning. I didn’t see the doctor afterwards, but was told to schedule an office visit with her for next week. So we’ll see how it goes.

Once I woke up in recovery, I was given pictures taken from the endoscopy without any explanation of what I’m looking at or what the pictures show. Is this something that you guys experienced when you had your endoscopy?

 

Thanks!!

[cyclinglady]

I received pictures, but my GI came into the recovery area and gave them to me, along with an explanation of what he saw and did.  

I did have to wait though for the pathologist to review the biopsies.  

Edited October 16, 2019 by cyclinglady

[Whitepaw]

I didnt get pix, but GI talked to me right after about results. Had a follow up a week or two later in the office for more info. 

[GFinDC]

The doctor will probably send your pics and biopsy samples to a lab for analysis.  They check the biopsy samples for flattening of the villi and cells that indicate inflammation typical of celiac disease.  Sometimes the damage from celiac is obvious in pics, but most times it needs to be checked under a microscope to see.

Edited October 16, 2019 by GFinDC

[LuluMurph]

So I talked with my doctor this afternoon and she said that she found some mild spots of inflammation in my stomach and small intestine but nothing so concerning that she felt the need to discuss it with me after the procedure. She said she couldn’t tell for sure whether it would be celiac or not and that the pathology report would be the only way to know for sure. 
 

She also said that her test for H. Pylori was negative. 
 

Is it possible that I actually have celiac if she only found mild inflammation?

I don’t really wish that I have celiac, but dang would I like relief from the symptoms I have. 

[Whitepaw]

My Dr. was able to see changes in the villi during the scope, so he pretty much knew. But he was pretty sure before the scope, due to my symptoms  (anemic, low vitamin D).  Hard to guess what you might have ...maybe Celiac,  maybe not.  I cant imagine having to wait!

[Jim Hess]

You must wait for the pathology report.  Shouldn't take but 2-3 days.

[cyclinglady]

My endoscopy that was done to diagnose my celiac disease revealed nothing.  I received no photographs.  My GI must have had an older scope.    My biopsies (pathologist’s report) stated a Marsh Stage IIIB (moderate to severe damage).  

Five years later, I had a repeat endoscopy.  This time my new  GI had a scope that did take photographs.  The magnification was strong and you could see healthy villi.  Biopsies confirmed healing.  

You just have to wait for the pathologist’s report.  

[RMJ]

It is quite possible for the intestine to look normal visually but show celiac when the pathology is done and looked at under a microscope.