Confusing Test Result

[Grumpopotamus]

Happy Monday friends,

I am new to this forum.  I'm a 36 y/o female, and am seeing a GI doctor for bowel changes and other unsavory symptoms.  I have suspected Celiac, and although the GI doctor said he didn't think it was Celiac, he ordered tests to be thorough. I have waited a few days to hear from his office regarding the results, but I received the results via email. I'm awful at this waiting game.  What the HECK does this mean?  I'm seeing conflicting numbers online, and I'm utterly confused.  Thank you for any light you can shed on these numbers:  

• Endomysial Antibody Iga  Negative

• T-Transglutaminase (Ttg) Iga  5  High

            Ref range:   0-3 U/ml

• Immunoglobulin A, Qn, Serum:  224 Normal

           Ref Range:   87-352 mg/dL

[cyclinglady]

Welcome!  

I am not a doctor, so you should discuss your results with her/him.  But....you have a positive.  It only takes one on the panel.  You are not IgA deficient (your 224 result).  This is a control test (in this case) to determine if the TTG IgA or EMA IgA test was valid.  This means the testing worked!  

Keep eating gluten.  The next step is an endoscopy to obtain biopsies to see villi damage.   Any other questions?  We are here to help ?.  

[Grumpopotamus]

Thank you, cyclinglady. Your explanation is very helpful. My favorite part of your reply is when you said "keep eating gluten!" ?  I didn't realize only one of those needs to be positive, and references ranges seem to be different everywhere.  Thank you!

[cyclinglady]

Those chickens on your avatar?  Are they yours?  

[cyclinglady]

More about testing......

Open Original Shared Link

and....learn about the gluten free diet, but do not start it until all testing is done (lab results in your hands!)

 

[Grumpopotamus]

Thank you; when I saw the "high" result, I immediately thought I should modify my diet, but I see why I should hold off for now. 

Yes, those are my hens, silly things ?

[Jmg]

Hi! You may find some of the links in this thread of use?

 

 

[Grumpopotamus]

The nurse from the GI clinic called this morning and said the doctor "said everything is normal" (he had also ordered a CBC panel and TSH). I told her I was concerned about the one "high" value on the Celiac portion, and the response was "Well he is the hospital doctor and won't be back until next week. You can ask him about it at your procedure." 

I have a colonoscopy scheduled for next Wednesday, due to the symptoms I was having when he ordered the blood work.  Talk about confused and frustrated 

[cyclinglady]

What??????? You should seriously consider a new GI!  You do NOT need to have a positive on every single celiac disease test -- just one.  He used the most common and standard test the TTG IgA and it was positive!   See this celiac disease diagnostic alogrithm from the Mayo Clinic  for yourself (do not look at the ranges since these do not match your lab ranges and labs vary).  

Open Original Shared Link

Why isn't he following the College of GI's recommendations for diagnosing celiac disease as published in the American Gastroenterology Journal?  

Open Original Shared Link

Wait, can you re-confirm your lab ranges?  

Forget talking to the nurse.  Document your concern in a letter to arrive by next week and reference the links if you want to cover all bases!   A colonoscopy RARELY catches celiac disease because most damage occurs just past the stomach.  You probably need both (rule out IBD etc.)

 

[Grumpopotamus]

I'm going to run this by my primary care physician and see if we can't get another opinion. 

The reference range on the lab report said 0-3 is "Normal," and that 5 is "High." ?

[cyclinglady]

I can tell you that personally only my DGP IgA was positive on the complete panel: IgG and IgA versions of the TTG, DGP and EMA (this one just IgA was ordered).  My biopsies revealed moderate to severe intestinal damage.  Anemia  was my only symtptom at the time and it resolved in the gluten free diet.  Even in follow-up testing, I still test positive to the DGP only (when glutened).  Weird, but true.  That is why there are several celiac blood  tests.  The TTG is the preferred for screening (cheap and effective but not 100%).  IF that is negative, the GI can order the rest of the panel, if he suspects celiac disease.  

I would hate to have this overlooked.  Later on, you'll be fracturing bones because it was not diagnosed or like a few members develop lymphoma (rare).  

I bet the GI relies on the EMA which I have never had a positive on.    Wonder how many celiacs he has missed?  

You might not have celiac disease, but if he is doing a colonoscopy, he should do an endoscopy to rule it out.  

[squirmingitch]

20 minutes ago, cyclinglady said:

I can tell you that personally only my DGP IgA was positive on the complete panel: IgG and IgA versions of the TTG, DGP and EMA (this one just IgA was ordered).  My biopsies revealed moderate to severe intestinal damage.  Anemia  was my only symtptom at the time and it resolved in the gluten free diet.  Even in follow-up testing, I still test positive to the DGP only (when glutened).  Weird, but true.  That is why there are several celiac blood  tests.  The TTG is the preferred for screening (cheap and effective but not 100%).  IF that is negative, the GI can order the rest of the panel, if he suspects celiac disease.  

I would hate to have this overlooked.  Later on, you'll be fracturing bones because it was not diagnosed or like a few members develop lymphoma (rare).  

I bet the GI relies on the EMA which I have never had a positive on.    Wonder how many celiacs he has missed?  

You might not have celiac disease, but if he is doing a colonoscopy, he should do an endoscopy to rule it out.  

I agree!

[Grumpopotamus]

Just an update that may serve others well who are in this situation. The doctor himself called first thing yesterday morning and said he had misread the test results because of how they appeared on his computer screen (?), and promptly scheduled an endoscopy during my procedure next week.  

Moral of this story so far is that if something is confusing, ask until you get answers!  If I hadn't spoken up an asked for a double-check and feedback, well... 

thank you folks for the encouragement. 

[cyclinglady]

Whew!  I am glad it worked out.  ?

[squirmingitch]

Yay, Yay!!!! Good for you persisting.

This is also a lesson to others on how important it is to get copies of your medical records & check them over yourself .

Also, a big WHEW! it's nice to know your doc at least recognizes that only one positive is required to move to the endoscopy.

[Grumpopotamus]

Final Update:  

The endoscopy showed no signs of celiac damage (several biopsies were taken).  There was "minor inflammation - not clinically significant." 

As it happens, endometriosis may be the culprit concerning GI symptoms and back pain; we had a bit of an epiphany-week!

Unsure why the weak positive showed on the ttg, but I will be going "gluten-lite" and monitoring my diet to see what causes flare-ups of symptoms. 

When I realized how difficult a celiac-style life change would be, that was the most worrisome aspect for me if I had shown positive for it on the biopsies. I plan to do some research and approach local restaurants, cafes, bakeries, etc., to get feedback on who provides a true gluten-free experience, and look at the potential for cross-contamination (hey pizza place, is your gluten-free pizza made on the same equipment as the regular stuff?). I hope to compile a good resource for a local family-style publication we have here, and maybe it will help local celiac families make decisions.  

If I were a true celiac, this would be my go-to hangout spot, as you all are very kind and compassionate around here! Thank you for taking the time to listen and give feedback.  

[frieze]

Open Original Shared Link

 

not so fast.....many other links

[Jmg]

On 5/6/2017 at 4:04 PM, Grumpopotamus said:

Unsure why the weak positive showed on the ttg, but I will be going "gluten-lite" and monitoring my diet to see what causes flare-ups of symptoms. 

My only worry reading this is that you could actually have celiac or if not non celiac gluten sensitivity, and if so going gluten lite just won't cut it.   I know you find the idea of the diet daunting, but do consider trialling it, even just for a couple of weeks. 

[Victoria5289]

On 4/17/2017 at 11:49 AM, Grumpopotamus said:

Happy Monday friends,

I am new to this forum.  I'm a 36 y/o female, and am seeing a GI doctor for bowel changes and other unsavory symptoms.  I have suspected Celiac, and although the GI doctor said he didn't think it was Celiac, he ordered tests to be thorough. I have waited a few days to hear from his office regarding the results, but I received the results via email. I'm awful at this waiting game.  What the HECK does this mean?  I'm seeing conflicting numbers online, and I'm utterly confused.  Thank you for any light you can shed on these numbers:  

• Endomysial Antibody Iga  Negative

• T-Transglutaminase (Ttg) Iga  5  High

            Ref range:   0-3 U/ml

• Immunoglobulin A, Qn, Serum:  224 Normal

           Ref Range:   87-352 mg/dL

I believe he tried to let you know that this be chromes disease

[notme]

6 hours ago, Victoria5289 said:

I believe he tried to let you know that this be chromes disease

is that the disease that makes you incredibly shiny and irresistible to truckers???!!  i think i have that.  explains the husband, too...... 

[Victoria1234]

6 hours ago, Victoria5289 said:

I believe he tried to let you know that this be chromes disease

All these short, difficult to understand replies from today's new member are kinda funny. 

[icelandgirl]

35 minutes ago, Victoria1234 said:

All these short, difficult to understand replies from today's new member are kinda funny. 

Exactly my thought! ?