New here! Very confused by test results! High TTG/Negative Biopsy

[Kristie008]

I am very confused by my test results that I received and was hoping for some clarification and answers to some questions that I have! In November of 2017 I had a celiac disease panel done. These are my results:

Name: IgA     My value: 401    Reference range: 68-408

Name: TTG Ab IgA     My value: 71      Reference range: 0-3

This information was included under my test results:

No further celiac testing to be performed.

- INTERPRETIVE INFORMATION: Tissue Transglutaminase (tTG)

- Antibody, IgA

- 3 U/mL or less: Negative

- 4-10 U/mL: Weak Positive

- 11 U/mL or greater: Positive

- Presence of the tissue transglutaminase (tTG) IgA antibody is

- associated with glutensensitive enteropathies such as celiac

- disease and dermatitis herpetiformis. tTG IgA antibody

- concentrations greater than 40 U/mL usually correlate with

- results of duodenal biopsies consistent with a diagnosis of

- celiac disease. For antibody concentrations greater or equal to

- 4 U/mL but less than or equal to 40 U/mL, additional testing for

- endomysial (EMA) IgA concentrations may improve the positive

- predictive value for disease. After these results my GI doctor wanted me to have an endoscopy and a colonoscopy. I had these procedures done on January, 24th. Today I received a call from the nurse and she told me that my colon biopsies were normal as well as the biopsy the doctor did of my duodenum. She said that I tested negative for celiac disease. She also said that the biopsy done of my esophagus showed that I have esophageal candidiasis. I was prescribed Diflucan. Now, I am very confused! I have terrible stomach pain, fatigue, back pain, weight loss (20 lbs) and diarrhea. This has been going on for quite some time hence why I went to the GI in the first place. I don't understand what is going on with me! So, my questions that I was hoping someone could answer are: What else can cause an elevated TTG? Could it be the esophageal candidiasis that caused the elevated TTG? Is it possible that I do actually have celiac disease even though my duodenal biopsy came back normal? I was so hoping for some answers from these tests as I have not been feeling good for some time and would really love to get on with my life! I am a 27 year old female and I have a 4 year old son, I would love to be able to do all the things he wants to do without feeling terrible while doing them! Also, I have an appointment with my GI tomorrow, any suggestions as to what questions I should ask besides the questions I have asked here? I really want to walk out of her office tomorrow and have some answers!!! Thank you so much for reading and helping me interpret some of this mess!

 

[ZobGuyn]

Kristie,

Sadly, the diagnosis of celiac disease is often confusing.  I'm an ob/gyn, so I don't have formal training in this by any means.  Though I have celiac disease so I try to stay up to date on things.

I'm not aware of anything else that could cause elevated TTG antibodies.  Your GI only took 1 duodenal biopsy, though did several colonic biopsies?  I think usually they need to take multiple duodenal biopsies because it can be easy to miss a lesion in the duodenum.  Also, the GI doc may consider doing genotyping as the biopsies do not match up with the blood testing.

Good luck.  Autoimmune disorders can be very confusing.  Thankfully it is getting easier and easier to eat gluten free!

[cyclinglady]

Consider confirming with the GI as to exactly how many biopsies were taken and their location.    Get a copy of the pathologist’s report, the endoscopy notes, and your lab results from the blood tests as you may want to get a second consult and it is good to keep for life!  

I can tell you that during my last endoscopy (after being gluten-free for five years), my GI only took one biopsy from the doudenum.  Why?  Because his lastest and greatest scope could visually see tons of villi and he went down far.  The newer scopes do have great magnification.  That said, your damage could be much lower and beyond the reach of either scope.  That happened to my niece who does not have celiac disease but was diagnosed with Crohn’s via a pill camera.  

Sime things can slightly elevate the TTG, like other autoimmune disorders or maybe even Lyme Disease, but your result is very high.  

He might suggest a pill camera, a gluten-free diet trial, retesting your TTG to see if it was a false positive or run the entire celiac panel to include the EMA and DGP tests.  Talk about your Candida issue too.  What might be the root cause of that?  It could be the source of your current symptoms.  I went back for my endoscopy because my DGP antibodies had been elevated last winter and I could not tell if they were going down or up when I retested in the Fall.  I am super strict with my diet and I needed to know why I was feeling sick.   My small intestine is healed, but I have chronic gastritis (autoimmune).  So, celiac disease was not the culprit.  

I hope this helps with your doctor visit (and let me disclose that I am NOT a doctor).  

[Kristie008]

ZobGuyn,

I'm sorry I should have specified! My EGD procedure report states: Duodenal biopsies were obtained to evaluate for celiac disease.

So, more than one biopsy was taken. I too am not aware of anything else that causes elevated TTG antibodies, I plan on asking my GI about it tomorrow!

Thank you so much for your response!

[Kristie008]

Cyclinglady,

I will absolutely confirm with my GI about how many biopsies were taken. I have my EGD procedure report that states: Duodenal biopsies were obtained to evaluate for celiac disease.  Duodenum was normal upon examination. So, I'm assuming that more than one biopsy was taken. The procedure report also states that: The Olympus video endoscope was advanced to the 2nd portion of the duodenum without difficulty. There were no immediate complications.

Findings were as follows: The Z-Line was located at 40 cm from the incisors. The gastric folds began at 40 cm from the incisors. The diaphragmatic hiatus was 40 cm from the incisors.

I do plan on bringing up the Candida issue tomorrow as well. I want to know if that could be the cause of all of my symptoms and the elevated TTG. I plan on asking to have my blood work retested tomorrow. My goal is to walk out of my GI doctors office with ANSWERS! Lol! I learned that I have to be my own advocate! My primary doctor is a piece of work and I've learned from being her patient that I need to speak up and ask questions.

It's been a crazy few months and I am ready to start feeling better! It's been years of bowel movement issues and in September it came to a head! I was in so much pain I went to the ER because I thought I had appendicitis. A CT scan showed that I didn't have appendicitis but that I had colitis. My white blood cell count was slightly elevated at the time. I was prescribed ciprofloxacin and flagyl. Neither one of them helped at all. I am just beyond confused with everything! Thank you so much for your response!