New with more test results - still don't understand them

[mrsdelore]

I had posted back in April with the following blood test results through imaware.com that were sort of mixed and confusing. This testing was done while I was on a gluten-containing diet.

 

I did follow up with my PCP and she ordered a Celiac panel. However, I was set to ditch gluten (as part of eliminating ultra-processed foods) for the weight loss program I'm on. Last week, I needed bloodwork done in advance of upcoming surgery and I didn't realize they would go ahead and run the Celiac panel as well. I have only eaten gluten one time in the past month. These are the results of the Celiac panel that was done.

 

Component                                     Your Value                     Standard Range                              Flag

Immunoglobulin A (IgA), S                377 mg/dL                    61 - 356 mg/dL61 - 356 mg/dL         H

 

Component                                                  Your Value                             Standard Range                                                         Flag

Tissue Transglutaminase Ab, IgA, S               2.2 U/mL                              <4.0 (Negative) U/mL<4.0 (Negative) U/mL

 

I guess my question, since I don't really understand any of the testing, is what do my results really mean?

[ravenwoodglass]

8 hours ago, mrsdelore said:

I had posted back in April with the following blood test results through imaware.com that were sort of mixed and confusing. This testing was done while I was on a gluten-containing diet.

 

I did follow up with my PCP and she ordered a Celiac panel. However, I was set to ditch gluten (as part of eliminating ultra-processed foods) for the weight loss program I'm on. Last week, I needed bloodwork done in advance of upcoming surgery and I didn't realize they would go ahead and run the Celiac panel as well. I have only eaten gluten one time in the past month. These are the results of the Celiac panel that was done.

 

Component                                     Your Value                     Standard Range                              Flag

Immunoglobulin A (IgA), S                377 mg/dL                    61 - 356 mg/dL61 - 356 mg/dL         H

 

Component                                                  Your Value                             Standard Range                                                         Flag

Tissue Transglutaminase Ab, IgA, S               2.2 U/mL                              <4.0 (Negative) U/mL<4.0 (Negative) U/mL

 

I guess my question, since I don't really understand any of the testing, is what do my results really mean?

The testing that was done while you were still on gluten shows two positive tests. Has your doctor seen those results? Going gluten free could very well have caused a false negative on your most recent tests. Did you achive some resolution of symptoms during the time you were gluten free?  You may want to go back on gluten for a couple months and have your doctor retest using all the tests not just the tissue transglutaminase. It is my understanding that the DGP tests (the ones you were positive for in your first tests) are more sensitive.

[RMJ]

In your original test you only tested positive on the DGP antibodies, not TTG.  In the second test, they only tested the TTG antibodies, which were negative - like they were in the first test.  So your results are consistent, just an incomplete panel for the second test.

There are several different antibody tests for celiac disease.  You don’t have to be positive on all of them to have celiac.

[mrsdelore]

12 minutes ago, ravenwoodglass said:

The testing that was done while you were still on gluten shows two positive tests. Has your doctor seen those results? Going gluten free could very well have caused a false negative on your most recent tests. Did you achive some resolution of symptoms during the time you were gluten free?  You may want to go back on gluten for a couple months and have your doctor retest using all the tests not just the tissue transglutaminase. It is my understanding that the DGP tests (the ones you were positive for in your first tests) are more sensitive.

She does. I didn't realize they were going to run the Celiac test when the did the other blood work for my surgery - if I had know I would have told them not to bother with that one.

Symptoms have improved being off gluten. I never had huge digestive issues - rather I have chronic fatigue and joint pain, random itching of my left arm with no rash. I do still have the itching so maybe no connection there - but it has only been a month off gluten - but my joint pain has improved.

The few times I have eaten gluten recently, I noticed a definite full and bloated feeling afterwards.

[ravenwoodglass]

3 minutes ago, mrsdelore said:

She does. I didn't realize they were going to run the Celiac test when the did the other blood work for my surgery - if I had know I would have told them not to bother with that one.

Symptoms have improved being off gluten. I never had huge digestive issues - rather I have chronic fatigue and joint pain, random itching of my left arm with no rash. I do still have the itching so maybe no connection there - but it has only been a month off gluten - but my joint pain has improved.

The few times I have eaten gluten recently, I noticed a definite full and bloated feeling afterwards.

Sounds like you have a decision to make. If you would need a doctor's diagnosis to stay compliant with the diet or to have family members take you seriously or that you feel need to be tested then you may want to do a challenge and have the doctor run a full panel. If you can stay strictly gluten free without a formal diagnosis then you could simply choose to stay on the diet. I had a great deal of fatigue,  joint and muscle pain prediagnosis that resolved at least until age and physical hobbies and work brought arthritis and bone spurs here to stay.  If you decide to stay on the diet you may want to drop soy and dairy for a bit also. After a couple of weeks add them back in one at a time and see if symptoms worsen or return.

[mrsdelore]

7 minutes ago, ravenwoodglass said:

Sounds like you have a decision to make. If you would need a doctor's diagnosis to stay compliant with the diet or to have family members take you seriously or that you feel need to be tested then you may want to do a challenge and have the doctor run a full panel. If you can stay strictly gluten free without a formal diagnosis then you could simply choose to stay on the diet. I had a great deal of fatigue,  joint and muscle pain prediagnosis that resolved at least until age and physical hobbies and work brought arthritis and bone spurs here to stay.  If you decide to stay on the diet you may want to drop soy and dairy for a bit also. After a couple of weeks add them back in one at a time and see if symptoms worsen or return.

I don't need the official diagnosis and my doctor already said to try gluten free and if I feel better, stick with it. I do have some other slightly off blood tests (high red blood cell count, etc.) that do make me wonder if they are all connected in some way. Thank you for taking the time to comment - appreciated!

[ravenwoodglass]

Just now, mrsdelore said:

I don't need the official diagnosis and my doctor already said to try gluten free and if I feel better, stick with it. I do have some other slightly off blood tests (high red blood cell count, etc.) that do make me wonder if they are all connected in some way. Thank you for taking the time to comment - appreciated!

Sounds like a plan. Ask any more questions you need to ask and do read as much as you can here. I don't get the chance to visit often any more but we have many great helpful members that will be willing to help support the changes you may need to make.