Confused! Please Help

[newjoy82]

I'll try to make this short... I was tested a few weeks ago via blood work for a variety of things and tested weak positive for TTG IgG. Also had low vitamin D and have low overall IGA. I had gone to the doctor because at 16 I had been diagnosed with Fibromyalgia and now almost 32 I wanted to verify that was the correct diagnosis. Based on the bloodwork the doctor said I have Celiac disease and to go on a gluten free diet. I called back for more information as from what I have read a endoscopy is how it's diagnosed. I also wanted to know if my son should be on the same diet. The doctor said the blood tests are pretty accurate, but we could do the gene blood work to give me an idea of the likelihood of my son having or developing Celiac. All of that said...I got the results back today and unless I'm completely reading them wrong I tested negative for the celiac genes. Everything I've seen online says having them doesn't mean you have celiac but not having them means you DON'T. So, what the heck??...I'm thoroughly confused now.

 

 

Celiac panel results:

GLIADIN AB, DEAMID. IgG 1.9 U/ML
NEGATIVE U/ML <20

 

GLIADIN AB, DEAMID. IgA 1.7 U/ML
NEGATIVE U/ML <20

 

TTG IgG [H] 6.2 U/ML
WEAK POSITIVE U/ML 6-9

 

TTG IgA 0.6 U/ML
NEGATIVE U/ML <4

 

 

Celiac

Tests: (1) CELIAC DISEASE GENOTYPE (5783)

Order Note: REPORT DELIVERED BY HTPN LABORATORY

Order Note: CPL Acession: VY222241

! HLA-DQA1 01:02,04:01

-------------------REFERENCE VALUE--------------------------

Not Applicable

! HLA-DQB1 04:02,06:04

Serologic Equivalent:

4,6

-------------------REFERENCE VALUE--------------------------

Not Applicable

! CELIAC GENE PAIRS PRESENT?

No

! INTERPRETATION: (NOTE)

The absence of HLA celiac permissive genes would make the

presence of celiac disease unlikely.

--------------------------------------------------------------------------

The following results were not dispersed to the flowsheet:

HLA-DQA1, 01:02,04:01, (F)

HLA-DQB1, 04:02,06:04, (F)

CELIAC GENE PAIRS PRESENT?, No, (F)

 

[RMJ]

Blood tests for antibodies are not perfect - I used to work in an R&D lab that developed them. Each manufacturer that develops a test chooses a value for the cutoff for positive vs negative so that most, but unfortunately not all, patient results fit with the results of biopsies taken from the same patients. Your positive result is awfully close to being a negative. With that plus the negative genetic testing, I wouldn't want to assume a diagnosis of celiac without further evaluation, i.e., repeating the blood test, an endoscopy, or improvement of symptoms and significant lowering of TTG IgG level after being on a gluten free diet.

[newjoy82]

RMJ, thank you for the response...I felt a little uncomfortable with the initial diagnosis based on only the weak positive. It is a bit frustrating since I have cut out all gluten over the last couple weeks. I can't tell a difference at this point. I thought I finally had an answer and it looks like I'm back at the drawing board. I'm worried the doctor is going to say I must just be gluten intolerant and not want to investigate further.

[SMRI]

When you have a low total IgA, your IgA celiac tests are not going to be accurate. Did they measure your overall IgG, including subclasses?  Without those numbers, your IgG levels might not be accurate either. I'd be suspect of your overall results as well given you do not have the common celiac genes.  There are some people that feel there are other genes that contribute to Celiac though so it's possible you have those.  I would say your next step would be a biopsy, but realize if it is not done properly or they do not take enough samples, they could miss damage as well.

[newjoy82]

Hello SMRI, I had my total IgA measured by my allergy doctor right before all the blood work this doctor did. My levels were 55 and the test normal range was 90 something to 400 something.

 

Thank you for your response...I'm waiting to hear back from the doctor to discuss the results and see what she says about next steps.

[SMRI]

Hello SMRI, I had my total IgA measured by my allergy doctor right before all the blood work this doctor did. My levels were 55 and the test normal range was 90 something to 400 something.

 

Thank you for your response...I'm waiting to hear back from the doctor to discuss the results and see what she says about next steps.

 

Ask if they ran your total IgG, including the IgG subclasses.  If not, you should have those done too.  It's very common if you are low IgA to also be low IgG.  If your IgG subclasses are low, it might why your ttIgG level is just barely positive.  It would also probably mean that is really higher than that.  Low IgG subclass 3 has similar symptoms as Celiac, minus the intestinal damage, so you want to differentiate between the two.

[ravenwoodglass]

  Low IgG subclass 3 has similar symptoms as Celiac, minus the intestinal damage, so you want to differentiate between the two.

That is interesting. Do you have a link to where you got that info?

[newjoy82]

SMRI , thank you for the information! Still waiting to hear something from the doctor. I believe total IgG was run as well and the only thing for total overall that came back low was IgA. But, I will definitly check.

 

Side note - I ate some cheesecake (with a graham cracker crust) last night and got a latte from starbucks to see what might happen... Nothing thus far. I've been off gluten for 2-3 weeks as of yesterday. I hadn't noticed any difference in symptoms while off gluten...i do realize some celiacs don't have typical symptoms and it can take time. But, I was curious to see if it would have any affect.

[SMRI]

That is interesting. Do you have a link to where you got that info?

 

I could probably dig one up or you can search for immune deficiency and info on the subclasses for IgG.  My daughter has this so that is how I know about it.  Low IgG subclasses and low IgA is called CVID, Chronic Variable Immune Deficiency.