Lower right rib pain

[Mackie 0]

My long story short...

I went to my primary care physician with the following symptoms which have gotten much worse in the last few months -

Weight loss, neurological symptoms, GI issues, dry eyes, rash on hands, extreme fatigue, probably depression, anemia, abnormal pap...etc

I have a family history of Celiac (Mom and maternal grandfather) and 1st cousin on mother's side. I asked to be tested for Celiac, she also ran a Rheumatoid Factor.

The office called and said I had a positive Rheumatoid factor recommended that I see a Rheumatologist. The office said that my Celiac test was positive. I went to the Rheumatologist and he diagnosed me with Sjogrins Syndrome and having a gluten sensitivity. The next week my Dr's office called back and said my Celiac was negative and that I should seek a second opinion with another RA and that I should see a GI specialist, because they don't know what is wrong with me, but it is not Celiac.

In the interim, I took myself off of gluten and feel much better. Most notably, less stomach pain and more energy. I do believe I have Celiac, but am confused and a bit concerned that it could be something else as well.

I was hoping someone could help me interpret the lab work (I was eating gluten at the time of the lab work).

Celiac Panel

tTG Ab, IgA - negative (less than 20)

IgA, Serum - positive 602 mg/dl (reference range - 82-453)

Rheumatoid Factor (IgA, IgG, IgM)

IgG - positive 76 U/ml (reference range - 0-20)

IgA - positive 361 U/ml (reference range - 0-35)

IgM - positive 249 IU/ml (reference range - 0-25)

ANA Choice with Reflex to Titer, Serum - positive

Sjogrens Antibody

SSA Antibody - positive greater than 8 A.1 (reference range - less than 1)

SSB Antibody - negative 0.9 A.1(reference range - greater than 1)

I cannot interpret these results and I am reluctant to go back on gluten to get a biopsy, or some other definitive test. I feel that I have Celiac, but am not sure what I should be doing for next steps. I don't need a diagnosis to stick to the gluten-free life, but am just worried it could be something more sinister.

Any help would be appreciated!

[alevoy18 1]

Hi,

I was diagnosed about 5 months ago after having a wide variety of unexplained systems. My heart began to slow and finally stopped and I had a pacemaker put in. I had unexplained anemia with bone marrow showing signs of failure. I had seizures and felt weak all the time. They suspected cancer, but before I saw the octologist, they did a celiac test and it was strongly positive. I know all about the testing as I was guinie pig last year.

As far as your celiac panel is concerned, IgA is outdated and not accurate enough. You need to request that you have a tTG panel instead. It has a 90+% accuracy, so basically if this is postive then you are likely Celiac. After the tTG test, if it is positive, you need to have a biopsy done. The biopsy is quick and painless as you are drugged. It confirmed my positive blood test. Try mentioning this to your doctor. best wishes!

[string bean 0]

I am curious about your rash. I have had the bloodwork done and they say I am "normal", but my total IGA was high. I have a rash on my hands that I THINK is DH, but it doesn't look like the pics I see and the dermatologist said it was not DH by visual exam.

[nora_n 60]

Hi, you had one celiac test done, the Ttg IgA test.

The other tests were for the total IgA,

rheumatoid factor and sjögrens.

Now there is a lot in the literature that says that sjögrens is connected to gluten and that sjögrens patients shoudl go totally off gluten for that reason.

I am totally sure that I could have avoided hashimotos, another autoimmune disease, by going gluten free some years ago.

The celiac blood tests are designed to first be positive when tehr is a lot of villi damage in the intestines, and not when other outoimmune illnesses have been triggered.....

Can you get teh other celiac blodo tests done before you are gluten free too long?

They are:

ttg IgG (you had the IgA version)

antigliadin IgA

antigliadin IgG

endomysium antibodies

Sometimes people only have one of them show up positive, and there is reason to believe you are celiac seeing you have the sjögren tests positive and you feel better off gluten.

Personally, I think you should go gluten free at the end even though tests might turn out to be negative. The tests are designed to only be positive when there is a lot of villi damage. In the meantime, all kinds of autoimmune illnesses have been triggered.

You can still do enterolab testing if you want to, as these tests can pick up celiac antibodies for a while after going gluten free, but they cannot diagnose celiac, only gluten sensitivity.

The antibodies are first only in the intestines, and it takes a lot of damage before they spill over into the blood. That is the point of enterolab testing.