Test questions

[Tamog]

This week I got my test results back for Celiacs.

My IgA was 465 ( Test says normal is 46- 287) My Transglutaminase was 10.

The doctor diagnosed me with Celiacs based on this and the fact I have a 2.7 bone density on one femur. (Osteoporosis is considered anything over 2.5). I m 62, so definitely old enough to have low bone density. Also I have had digestion issues with bloating and things of that nature. 

So I began a strict Celiac diet. Now, I am wondering if I should get further testing. 

Edited October 9, 2019 by Tamog

[RMJ]

What is the normal range for your Transglutaminase result?  Normal varies from lab to lab.

[Tamog]

I don't know, I am quoting what my test results said. I have never had the test before so I can only go by the fact that it said normal range was 46-278. 

[RMJ]

That (46-287) is for the total IgA test, wasn’t there also a normal range listed for the Transglutaminase test?

[GFinDC]

Hi Tamog,

Normally the doctor will do an endoscopy to check for villi damage in the small intestine.  You shouldn't go gluten-free until after the endoscopy.  The GI should take 4 to 6 biopsy samples during the endoscopy.  The biopsies are usually sent to a lab for analysis.  Celiac disease often causes atrophy of the small intestine villi, and that's what they look for in the biopsy samples.

[Tamog]

Nope. I got the test results in my email it just said my test range score for Transglutaminase  was 10 and the normal range was > =19 and my IgA was 465.. and that the normal was 46-287. The doctor never mentioned a biopsy, she just said, "You have Celiacs, Go Gluten Free." - and put on my chart that I had Celiacs.

[cyclinglady]

Welcome! 

The IgA (Immunoglobulin A) test Has many uses.  For diagnosing celiac disease, a number within range or above indicates that any celiac IgA test given is valid.  It is a control test.  

Your doctor also ordered the TTG IgA to test you for celiac disease.   The range you provided seems strange.  It was a 10.  I think that a positive would need to be greater or equal to 19.  Your result might be negative.  

I think you need to talk to your doctor and confirm the results. Usually, celiac disease is confirmed by a Gastroenterologist as GFinDC stated.  Based on your healthy history, your doctor might skip that step.  

I would ask for clarification or get a second opinion.  

If you are satisfied with your diagnosis, I encourage you to ask for a referral to a dietician who can guide you through the Gluten free  diet.  I suggest avoiding processed foods and do not eat out until you are feeling better.  

Research is your best defense.  

 

[GFinDC]

8 hours ago, Tamog said:

Nope. I got the test results in my email it just said my test range score for Transglutaminase  was 10 and the normal range was > =19 and my IgA was 465.. and that the normal was 46-287. The doctor never mentioned a biopsy, she just said, "You have Celiacs, Go Gluten Free." - and put on my chart that I had Celiacs.

Hi Tamog,

I think it would be good to ask the doctor if they are planning any more testing.  The celiac blood antibody tests followed by an endoscopy is the standard diagnostic process.  But if you are satisfied and want to go gluten-free now and forget about further testing that's fine.  Just be aware that it is harder to get tested later as you would need to do a gluten challenge of eating gluten for 12 weeks.  Often when people do go gluten-free for a while and then do the gluten challenge for testing they find it difficult to complete the challenge due to symptoms.

If you want to skip the testing and accept the doctor's opinion that's ok.  You'll need to eat a gluten-free diet which contains no wheat, rye or barley. Avoiding processed foods is helpful IMHO.  Instead concentrate on eating meats, veggies, nuts, eggs, and fruit.  There is a Newbie 101 thread in the Coping with celiac section with some getting started tips.

The doctor should test you for vitamin and mineral levels too.  Celiac causes malabsorption so we are often low on some of them at first.

Mission corn tortillas and Aldi gluten-free wraps are a possible substitute for bread.  There are gluten-free breads too but they are generally kind of $$$.

[RMJ]

I would go back on gluten and get further testing.  Something about the results and your doctor’s interpretation doesn’t add up.

[Tamog]

12 hours ago, GFinDC said:

Hi Tamog,

Normally the doctor will do an endoscopy to check for villi damage in the small intestine.  You shouldn't go gluten-free until after the endoscopy.  The GI should take 4 to 6 biopsy samples during the endoscopy.  The biopsies are usually sent to a lab for analysis.  Celiac disease often causes atrophy of the small intestine villi, and that's what they look for in the biopsy samples.

Thank you all for the replies. I am so confused. It just seems really complicated. It is weird that my Dr said " You have Celiacs," and put it in my chart as a diagnoses based on that one test. And the numbers (even to me) looked odd, as Cyclinglady said my Transglutaminase was 10 less than 19 by more than half.  In your opinion was the IgA too high? My IgA was 465 ( Test says normal is 46- 287)  Does that indicate Celiacs?? I have only been going gluten free for one week but I think I have really cut it all out. My main complaints are reflux, indigestion & bloating    /Off and on I have loose light gold color stools. Rarely brown.. I dread going out and looking for a  Gastroenterologist. Geesh. 

[RMJ]

You are right to be confused over those results. It is possible that your doctor is wrong and doesn’t know how to interpret the tests correctly, especially the total IgA. Can you ask “why do you say I have celiac when the only celiac specific test was normal?” I think you need a second opinion, preferably from a gastroenterologist.

I wouldn’t want you to have to put up with a lifelong gluten free diet if it isn’t necessary.

[cyclinglady]

The IgA test (Immunoglobulin A/antibodies) are just ordered to see if the celiac tests: 1.  TTG IgA, 2.  DGP IgA or the 3.  EMA IgA work.   Those three tests I listed are for celiac disease.  The IgA test (your result is 465) just means you make Immunoglobulin A and plenty of it.  It is not too high.  My lab range for that test goes to 400.  Lab ranges are based on the patients and where they live.  They can vary.  If you used my lab, you are just a little out of range which can be...well, normal.  But talk to your doctor to confirm.

You are making plenty of IgA so, your single celiac test, the TTG IgA should be correct.  It was negative from what I can tell.  But some celiacs like me never test positive to the TTG.   It is why there are three types of celiac disease tests (as I listed).  Your doctor choose the most popular.  He also saved you or your insurance  money by just ordering one.  My doctor orders the complete panel.  

You can go back on gluten and ask your doctor to run the other two celiac disease tests just to be sure or see a Gastroenterologist.  I really think your doctor mis-read the test results and saw that the IgA test was above range.    But that test does not really diagnose celiac disease.  ☹️

But if you are already feeling better after a week of being gluten free, then I think you might have your answer.  Are you feeling better?  Any other lab biomarkers like anemia, low b-12 or iron?  Any other diagnosed autoimmune disorders?  

 

 

Edited October 10, 2019 by cyclinglady

[Tamog]

Thank you all for your wisdom. I asked my son to look at his DNA testing he had a few  months ago and tell me if he saw any indications of Celiacs in our DNA. He said his report had said it showed a "slightly increased" chance of Celiacs.

  I am having mixed results with this test week of no Gluten. I have been really careful and not allowed even a taste, of anything I thought was suspect, as well as tried to stay clear of touching anything. Some days I think I feel better because I am not burping as much and do not feel bloated.  Today is the 8th day and  I feel lethargic, and have a terrible stomach reaction. I have no clue what I may have eaten to get so sick today. 

 Tomorrow morning I am going to eat an egg, and  for 2 weeks I am going to eat whole foods and eliminate sugar, gluten, gluten free crackers & breads and grains of any kind- and see if that will change things- of it doesn't I  am heading back to the doctor, as well as a Gastroenterologist.

If it turns out I *do not* have Celiacs,  I will have developed a whole new respect and admiration for what you guys are up against every day.  

Thank you so much.

[RMJ]

Sounds like a good plan.  I hope you can get a definitive answer one way or the other.