Testing Questions (Help!)

[absteroni]

Hello forum, this is my first post. Looking for some answers/advice.

I went in for a standard physical about 2 weeks ago. I'm generally a pretty healthy person, but I told my MD about some various GI symptoms and unusual fatigue I'd been experiencing for the last 6-8 months or so. Anyway, she ordered lots of blood work. Everything came back normal until my tTG tests were abnormal:

TISSUE TRANSGLUTAMINASE IgG 1.45

Tissue transglutaminase IgA 1.43

Standard range (both): <0.90 -

Unit: Index

So, expectably, my initial reaction was "what the heck do 1.45 and 1.43 mean?" They don't state a real unit, and they seem to be using a different metric than anything I can find online. My 1st question is, does anyone with celiac disease AND Kaiser remember their tTG results? It'd be nice to compare and see how out of range I actually am.

Anyway, after the results came back my Dr. reffered me to GI, saying I might have celiac (but maybe not). She said they may want to do a sigmoidoscopy to confirm or rule out the diagnosis. Ok, so next question: can a sigmoidoscopy determine a person's celiac status? Everything I've read so far implies that an upper endoscopy with biopsy of the duodenum is the standard diagnostic procedure for celiac disease. Please, correct me if I'm wrong.

Where I'm at right now, GI called me and scheduled a sigmoidoscopy (also claimed they hadn't seen my TTG result on the referral). I'm trying to get all the information I need, and hopefully resolve this situation such that celiac disease is either confirmed or ruled out, and I don't have to undergo (or pay for) any unnecesary tests. I'm a starving student on a tight budget, unfortunately.

Thanks much for reading my post, and thank you in advance for your replies.

-A

[mushroom]

Hello forum, this is my first post. Looking for some answers/advice.

I went in for a standard physical about 2 weeks ago. I'm generally a pretty healthy person, but I told my MD about some various GI symptoms and unusual fatigue I'd been experiencing for the last 6-8 months or so. Anyway, she ordered lots of blood work. Everything came back normal until my tTG tests were abnormal:

TISSUE TRANSGLUTAMINASE IgG 1.45

Tissue transglutaminase IgA 1.43

Standard range (both): <0.90 -

Unit: Index

So, expectably, my initial reaction was "what the heck do 1.45 and 1.43 mean?" They don't state a real unit, and they seem to be using a different metric than anything I can find online. My 1st question is, does anyone with celiac disease AND Kaiser remember their tTG results? It'd be nice to compare and see how out of range I actually am.

Anyway, after the results came back my Dr. reffered me to GI, saying I might have celiac (but maybe not). She said they may want to do a sigmoidoscopy to confirm or rule out the diagnosis. Ok, so next question: can a sigmoidoscopy determine a person's celiac status? Everything I've read so far implies that an upper endoscopy with biopsy of the duodenum is the standard diagnostic procedure for celiac disease. Please, correct me if I'm wrong.

Where I'm at right now, GI called me and scheduled a sigmoidoscopy (also claimed they hadn't seen my TTG result on the referral). I'm trying to get all the information I need, and hopefully resolve this situation such that celiac disease is either confirmed or ruled out, and I don't have to undergo (or pay for) any unnecesary tests. I'm a starving student on a tight budget, unfortunately.

Thanks much for reading my post, and thank you in advance for your replies.

-A

You are correct. I don't know where your doctor's head was but it was not wrapped around celiac disease.

[absteroni]

An update:

I emailed my doctor and got the appointment switched but it took a bit of maneuvering. I don't think she's the type of doc who likes being corrected. Going in for the endoscopy next week. Any thoughts about how to prepare? Also, what questions should I ask the GI doc?

Also, the common wisdom on this board seems to be that while false negatives do occur, false positive serum tests are rare (non-existent?). I'm curious, because my labs are positive for celiac, but even so, my general practitioner gave me the impression that I probably don't have celiac. Can anyone shed some light on this for me? My labs show I'm out of normal range, but is it possible I'm only slightly out of range? And what would cause a false positive tTG test? Of course, if anyone is familiar with Kaiser's TTG test, that would be very helpful.

Right now I'm in pre-mourning for my glutenous life-style, and also eagerly anticipating relief of my symptoms. I guess I'll find out soon enough. Celiac sure is a mixed bag.

[mushroom]

Regarding the out-of-range 'range' , put it this way. If normal range is under .90, and your score is 1.45, your are more than 50% out of range. I would not call that 'slightly' out of range. And they run the tTG test because it is most specific for damage to the small intestine. Now there are some other things thar can damage the small intestine but it's usually gluten.

[absteroni]

Thanks Mushroom! I had my endoscopy today. It was a disappointment. The whole thing felt rushed and I had about 2 minutes to actually talk to the doctor before they pushed the verced and I was out of it. Then at the end the whole staff was very eager to get me out of there. I'm very irritated, to say the least (though of course, it could be my hunger, dehydration + sedation talking). What should I do now, besides wait for the biopsy results? I wasn't instructed to eat gluten free, and I honestly don't know if I ever could without a diagnosis. This GI doc again reiterated that my TTG labs are "borderline high" whatever that means. I'm a scientist and a aspiring doctor: I want real numbers! And what do these labs mean if I don't have celiac? I've read that false positives can be attributed to other autoimmune diseases (which I don't have, to the best of my knowledge), but could they really just mean nothing?

I left a message with the GI dept. and I'm hoping my doctor will get back to me so we can have a lucid conversation tomorrow. I think sometimes the medical community sees a young person like me, and they don't expect us to care about or advocate for our own health. On my discharge papers I got the dreaded words "if biopsies are normal, probable Irritable Bowel Syndrome" Not looking for that amorphous diagnosis, should it come : (

Any advice about dealing with doctors or false positive serum tests would be awesome.

Thanks for the support.

Abs

[mushroom]

Well the first thing to get straight is that IBS is not a diagnosis, it is a description of your symptoms - something is making your bowel irritable, and I don't think it is being held up in traffic or stress from taking finals. Something you are eating is most likely the cause, and so many people who have been told they have irritable bowel syndrome end up having celiac disease or non-celiac gluten intolerance. So until proven otherwise, my money is on the gluten. Fortunately, you do not need a prescription to stop eating gluten, nor a doctor's permission. You can diagnose yourself as gluten intolerant and make yourself better. I would recommend that you not wait for the results of the biopsy but start the diet immediately, and perhaps be feeling better by the time the doctor tells you smugly that "gluten is not your problem". Give it a good strict trial - no cheating or fudging because you have to get it all - and see how you feel after a month, then after three months. If you don't feel better it is either not gluten, or not JUST gluten that is making your bowel irritable.