Hi everyone,

First poster here with request for help!

I recently requested to be tested for Celiac due to months of sudden and escalating joint pain. The joint /bone pain moves around. I have had a number of other blood tests for ANA , CRP, RA, Lymes and all so far are negative.

What we have found so far is:

Anaemia at 9.1 (not pern.anaemia..all reds are low)
Thyroid Underactive

After reading about Celiac Disease..I felt this strange kind of... connection - like all those other "smaller" things Id lived with all my life may have a connection to this bone pain. The other lifelong "smaller" things being:

tiredness and nausea sometimes after meals
weak stools (they always float lol. in fact until i read about celiac, i thought everyones did!)
accelerated digestion (i usually have stools at 2-4 times a day)
flatulence
abdominal distention
muscle cramps
I was an awkward kid who when ill, threw up until i reached my stomach green bile

So.... I ask my doc to test for Celiac. I collected my results today and he advised "negative"

But I look at my results and I see only three possible Celiac things on my blood count, these being

Transglut igA 1.2
transglut igA 1.2

Gliadin 1.2

Now Im an english speaker living in germany, so the titles may look a tad different... but Im a bit puzzled when i read my numbers here above, and compare with sarahelizabeth´s post which has all of this :

Antigliadin Abs, IgA: (0-4 normal)
Antigliadin Abs, IgG: (<9 normal)
t-Transglutaminase (tTG) IgA: (0-3 normal)
t-Transglutaminase (tTG) IgG: (0-5 normal)
Endomysial Antibody IgA:
Immunglobulin A, serum: (70-400 normal)


I feel I have a strong physical symptom list of Celiac, and dont want to let this one slide unless my bloods are conclusively against a celiac diagnosis. I intend to try gluten free anyhow...but ...only when I have a conclusive result from other tests.

Can any of you more experienced guys out there help me with what my results say... isnt it a bit weird that everything just says the same score of 1.2?

Again, as many newbies say, apologies for asking similar questions, but my...the world of docs isnt easy....


thanks in advance for any advice!!!

good_trojan

unfortunately, you can't use another labs reference ranges against your tests. you need to find out the reference ranges for the lab that your tests were performed at, in order to interpret the results.

thanks Tarnalberry!

Do you know which of the above tests though, my test were?

Like I see five test results often in other threads on this and other sites, but I only have three on my bloodcount.

Transglut igA 1.2
transglut igA 1.2
Gliadin 1.2

I don´t understand which ones are missing. From these three, Im not sure I had a full blood test..

no, I don't really understand the results. the first two things you right are the same thing, too. unless it was a typo - were one of those IgG, not both IgA?

but yes, at least some tests are missing.

thanks tarnalberry. You´re right, I did typo there.

Im going to follow the tests up again with my doctor.

Guten Tag!

I think it is quite a coincidence that all 3 results came out 1.2 I would question the results if they were mine!

Many doctors just order the Tissue transglutaminase test (TtG IgA) as a screen. It is good your doctor included the IgG as well and also the gliadin antibody. I would also ask for the total IgA (total immunoglobulin A) as well.

The endomysial antibodies you see on these boards are often part of an initial screen, but are only positive in 60% of confirmed celiacs anyway. So many doctors just order the TTg instead, which is fine as an initial screening.

It is possible that 1.2 is the low end sensitivity of the tests, so that is what they report, while many labs just report the numbers as <1 or less than 3, whatever the cutoff value is. I would ask the doctor if that was the case, then it would make sense that all 3 numbers were the same.

I hope this helps! And the symptoms you describe do sound like celiac! I would definately follow up.

Thanks NY547!

I saw an Endocrinologist 14 days back who diagnosed Autoimmune Hypothyroidism. My doc has since advised that they want to wait 4 weeks to monitor improvements in joint/muscle pain during that time to give the Thyroxin chance to help my body. On the one hand I understand the logic of this. On the other I am impatient and unconfident in this approach. I seem to have a sore throat almost daily now, and these strange 60 minute Irritability hours that are developing. On top of the joint pain, anemia, the immensely itchy skin and the abdominal pain- waiting 4 weeks seems to me like an age.

I believe I should be tested further for Celiac, but somehow I always feel like I have to push for this. It´s like being really sick and hassling doctors to help. It is so tempting to go gluten free in a trial but I feel in the long run that I should only do that as a last resort if Im not getting anywhere with a medical diagnosis.

I found a new website this week of a gastro specialist in my city whose clinic also screens for osteoporosis and thyroid illnesses. On their homepage, there was a link to european celiac websites.... I think this could be a good sign.. if I dont get anywhere with my current doc (I would prefer to, he has always been great before) then I am going for a second opinion.

thanks again to everyone for your replies,

much appreciated, have a grand day,

good_trojan

False negative abound in celiac testing. Going on the gluten free diet to see if it helps is only going to improve your thyroid if the diet is needed. The diet will not mask any other disorders or disease. Sometimes the best diagnostic there is is your response to the diet.