Question About Getting Tested.

[glutenfreemomma188]

I am new to this forum but not new to having Celiacs Disease. 

Before I ask my questions I want to tell you a short story about how I ended up finding out I have Celiacs Disease. 

 

It was a year ago that I started experiencing abdominal pain that felt as though my intestines were knotting up. I've always felt bloated and

sick but just chocked it up to just a normal feeling. However, when I started getting horrible stomach cramps, I couldn't ignore that and decided

to head to the doctor. The doctor {Who is more of a primary doctor then a specific GI doctor} preformed a blood test to determin if I had Celiacs

Disease and it came back more then positive. 

This is how my result looked: 

 

Tissue Transglutaminase Antibody IgA (My value 27.9) Standard Rage 0-3.9 U/mL

Interpretation: Positive

Tissue Transgltaminase Aby IgG (My value 60.4) Standard Range 0-5.9 U/mL

Interoretation: Positive

 

 

 

My doctor instructed me that I needed to get on a gluten free diet right away without doing any further testing like an endoscopy and or stomach biopsy. 

 

Now, back to my question, after seeing the above test result. Do you think I need to undergo any further tests or should I just stay on this g.f. diet?. 

Ever since I started the gluten free diet, I haven't experienced any further discomfort in my stomach and I am pretty sure the gluten is the culprit but

I have heard from a GI doctor that in order to confirm that I for sure have Celiacs Disease is to do a stomach biopsy. 

 

What are your thoughts guys, should I contact my doctor and tell him that I would like to this to be more confirmed?. 

 

Thanks in advance to reading and sharing your comments with me. 

 

[cyclinglady]

Well, if you wanted to do an endoscopy you would have to do a gluten challenge.  That means eating a couple of pieces of bread a day for two to three months.  You are right that a biopsy is the "gold standard" for diagnosis, but you've been on the gluten-free diet for a long time.  

 

You have a Celiac Disease diagnosis and have been off gluten for a year.  Have you improved?  Any symptoms?  Any re-testing (for Celiac) to determine if you are adhering to the diet (lower or zero results)?  A re-check may be worth asking, along with any other checks for deficiencies (e.g. iron stores, vitamin and mineral deficiencies).   

 

I'm formally diagnosed and my husband's who been gluten free for 12 years has not.  We're both feeling good and we know that gluten makes us sick.  My husband refuses to to a challenge -- it's not worth it for him.  

 

Hope this helps!  Welcome to the forum.

[nvsmom]

I decided to stop testing with two positive celiac tests too. My tests were tTG IgA (>200 with range of 0-20) and EMA IgA (1:40 titre), so a little different than yours but my two tests are very specific to celiac disease - I was satisfied.

 

Generally, if a test is giving a false positive, it is usually a weak positive, and your results were anything but weak. Also, false (weak) positives are caused by something else like diabetes, liver disease, thyroiditis, colitis, crohns, or a serious infection; the diseases I just listed can cause a false positive test in the tTG IgA about 5% of the time but I doubt that is the case with you or the gluten-free diet would not have made any impact on your life. The tTG IgG is also about 95% specific to celiac disease. Plus, two false positive tests is pretty unlikely.

 

Here is where I hot my information on the testing: 

Open Original Shared Link

 

Open Original Shared Link

 

I personally think, based on symptoms, tests, and (I'm assuming) a positive response to the gluten-free diet, that you have celiac disease. A gluten challenge at LEAST 2 weeks is usually required for a biopsy; 8-12 weeks for blood tests.... not fun.

 

I too think re-testing your positive tests would be a good idea. If your numbers have come down, or are coming down, then you know gluten was probably the culprit.

 

Welcome to the board.  

[SkyBlue4]

I was faced with a similar question months ago. To scope or not to scope. I was diagnosed by two doctors based on blood work alone, but I could not bring myself to start the gluten-free lifestyle without the endoscopy completed. 

 

Here's my two cents- You are already gluten-free. You said your symptoms are relieved and you have seen improvement on the gluten-free diet. Why turn back now? Like previously mentioned, consider getting more labs and see how your numbers look while you are gluten-free but I personally would not go back just to get scoped.

[NoGlutenCooties]

I know for me that no one could talk me into going back on gluten, or pay me enough to make me do it - and I didn't even have any symptoms.  The stuff is poison to a person with Celiac.  When I went to my GI doc, I asked her - You're not going to make me do a gluten-challenge later on down the road are you?  To which she replied, "Absolutely not!  We do NOT do that here!"

 

As far as the endoscopy, the only reason to get one at this point would be to make sure your gut is actually healing.  But if your bloodwork is coming back negative after being off gluten for awhile and your symptoms are gone, then there isn't really much point.

[glutenfreemomma188]

Well, I really appreciate your information guys. I thought it was worth asking. I will give my doctor a message and request another blood test to see how things are going, what a great idea. Thank you once again guys and also Thank you for welcoming me to the board.