Test Results - left uncertain?

[SaraNF83]

Hi there, I am new to this forum as I’m sure many are who post in this topic. I have been having some strange symptoms ever since I had my daughter (she is now 5) and have had many tests run but nothing much comes up. 

I was always thin, about 110 pounds before pregnancy. After having my daughter, I can barely hit 102 pounds despite eating a lot! I am frustrated by the weight loss and inability to gain it back. 

Well, lately I have had some ongoing issues with brain fog, low energy, gastro symptoms including reflux, pain in stomach, excess air trapped, occasional nausea, etc) and went to a GI. She wanted me to go for some blood tests to rule out celiac and h pylori. I agreed, and I just got the results. (3 years ago I had an endoscopy which said I was negative for celiac but No blood tests) h pylori was negative.

my results are as follows : 

immunoglobulin A - 165 (ref range is 87-352) 

Deamidated Gliadin, iGa - 7 (ref range (0-19 units) (normal) 

Deamidated Gliadin, IGG - 55 (ref range 0-19) (high positive) 

TTG iGa - 2 (range is 0-3) 

TTG IGG - 14 (range is 0-5) (high positive) 

Endomysial - Negative 

My follow up is November 16. So obviously the wide range of “negative” and “positive” here is alarming and confusing. Can anyone help? I’m worried the IGG tests represent something more sinister, other than celiac because those levels seem to crop up with crohns and other things. I do not seem to have crohns symptoms though. But honestly at this point what in the world do I even know? Apparently nothing lol.. 

Help is greatly appreciated. Does this point to celiac or something else? Thank you in advance! 

Sara 

[cyclinglady]

8 hours ago, SaraNF83 said:

Hi there, I am new to this forum as I’m sure many are who post in this topic. I have been having some strange symptoms ever since I had my daughter (she is now 5) and have had many tests run but nothing much comes up. 

I was always thin, about 110 pounds before pregnancy. After having my daughter, I can barely hit 102 pounds despite eating a lot! I am frustrated by the weight loss and inability to gain it back. 

Well, lately I have had some ongoing issues with brain fog, low energy, gastro symptoms including reflux, pain in stomach, excess air trapped, occasional nausea, etc) and went to a GI. She wanted me to go for some blood tests to rule out celiac and h pylori. I agreed, and I just got the results. (3 years ago I had an endoscopy which said I was negative for celiac but No blood tests) h pylori was negative.

my results are as follows : 

immunoglobulin A - 165 (ref range is 87-352) 

Deamidated Gliadin, iGa - 7 (ref range (0-19 units) (normal) 

Deamidated Gliadin, IGG - 55 (ref range 0-19) (high positive) 

TTG iGa - 2 (range is 0-3) 

TTG IGG - 14 (range is 0-5) (high positive) 

Endomysial - Negative 

My follow up is November 16. So obviously the wide range of “negative” and “positive” here is alarming and confusing. Can anyone help? I’m worried the IGG tests represent something more sinister, other than celiac because those levels seem to crop up with crohns and other things. I do not seem to have crohns symptoms though. But honestly at this point what in the world do I even know? Apparently nothing lol.. 

Help is greatly appreciated. Does this point to celiac or something else? Thank you in advance! 

Sara 

Hi Sara, 

Celiac disease can develop at any time.  When you last had your endoscopy, you might not have had active celiac disease or your doctor failed to obtain enough intestinal biopsies.  Usually four to 8 are required as damage can be patchy since the small intestine is vast (size of tennis court).  See if you can get the pathologist’s report and determine exactly what was done and studied.  

With two positives, your GI should order another endoscopy.  Hopefully, they take plenty of samples.  

If celiac disease is ruled out, you can trial the diet.  And see if the antibodies decrease.  Some doctors will give you a formal diagnosis based on improvement on the gluten free diet.  An endoscopy can help rule out Crohn’s, but I can tell you my niece has Crohn’s and did not present with typical symptoms at all.  Her diagnosis was caught on a pill camera.  She did not have any positives on the celiac panel which was given multiple times.  

Something is wrong.  Be persistent and find out.  If this is the same GI, consider getting a second opinion.  Keep and get and your medical records.  

I hope this helps.  

[SaraNF83]

Thank you so much for your reply. 

 

May i ask what atypical symptoms your niece had? I am just curious. I basically had stomach trouble 3 years ago (when the endoscopy was performed) and they told me I had a mild hiatal hernia and reflux. Then, the last 3 years I have basically had no troubles until 2 months ago when the symptoms presented again but milder. Enough to know I don’t feel “good” anymore though. And the weight loss has remained for 5 years since my daughters birth. 

Do you think these test results point to possible celiac? I am so unfamiliar with what tests mean what. I tried to google it. But of course it was mixed responses. 

I definitely will push for answers. I appreciate your time and response!!! 

 

Sara 

[cyclinglady]

She had periodic severe abdominal pain.  It would strike her usually during a fun event (like a vacation).  We thought she had celiac disease for sure, but we were wrong.  She is also very tiny, but then so are some of her relatives.  

When you have TWO very positive celiac tests, celiac disease seems pretty evident, but the biopsy will help confirm.  I only had a positive DGP IgA which is not common (never a positive on the EMA or the TTG eve on followup testing) yet I had some pretty severe intestinal damage.  I was only anemic at the time of my diagnosis, but had GI issues that would come and go throughout my life.  

Do you have any other autoimmune issues like diabetes or thyroiditis?  

[weebl]

I am in the process of getting diagnosed for Celiac as well, and I am learning as I go along. The advice I've received in this forum is tremendous. 

One thing I have learned in dealing with my kids' health is that the medical system is designed to be a revolving door to get you in and out in as little time as possible. 

The only way to ensure that you will get the help you need is to be your own advocate, don't accept an answer you know is not right, press for more tests if that's what's needed, or referrals if that's what you need. Be armed with a much knowledge as you can, and don't leave anything out in describing your symptoms. This is unfortunately the case for any complicated medical condition, not just Celiac.