To rice cracker or not to rice cracker?
March 8, 2011 2:18 PM Subscribe
YANAD/YANMD, BUT... What does an apparently high level of TTG antibodies mean? Does it indicate a problem with gluten, or just tissue damage, or what?
I had a blood test yesterday to possibly see if I was having issues with gluten. I got the results back, and to a lay-person, the results look really high. I probably won't hear from my doctor for a few days and I am wondering if these results might indicate an issue with gluten or not.
My doctor ran a blood panel of TTG antibodies, and it says:
My result: >128
Standard range: 0-6
Negative: 0-6
Equivocal: 7-10
Positive: >10
(I don't know what TTG stands for... Can't really explain any of this technically).
Thanks!
I had a blood test yesterday to possibly see if I was having issues with gluten. I got the results back, and to a lay-person, the results look really high. I probably won't hear from my doctor for a few days and I am wondering if these results might indicate an issue with gluten or not.
My doctor ran a blood panel of TTG antibodies, and it says:
My result: >128
Standard range: 0-6
Negative: 0-6
Equivocal: 7-10
Positive: >10
(I don't know what TTG stands for... Can't really explain any of this technically).
Thanks!
Response by poster: Damn, my GI doc appt. isn't until April 5th. I'd rather not go another month with stomach "fun" on both ends. Maybe my primary can order the endoscopy sooner if she thinks it's warranted.
posted by ShadePlant at 2:56 PM on March 8, 2011
posted by ShadePlant at 2:56 PM on March 8, 2011
Call your GP, yeah-- you might be able to start GF now and then re-gluten for a period of time before the biopsy.
posted by fairytale of los angeles at 3:05 PM on March 8, 2011
posted by fairytale of los angeles at 3:05 PM on March 8, 2011
Best answer: NOOOOO!!!! Don't start going gluten free now!! Even if you go back on a 'regular' diet for the biopsy you could still get a false negative. In my opinion getting that definitive diagnosis is really important. The gluten free diet is really hard to stick to, without the diagnosis it's too easy to cheat. Then you'll never feel better.
I totally agree that you should ask your GP for the endoscopy ASAP. If I were you I'd call the GI doctor and explain things and ask them if they can move you up. I went to the ER with my pains and had an endoscopy the next day, I saw the doctor about the results within a week.
If you do have to wait for the endoscopy ask your GP for some meds, there are some prescriptions that might help. I was given Bentyl and Levsin that are supposed to help the pain by keeping the gut muscles from spasming. Here's an article about them on WebMD. It didn't solve the issue, but they made life a little more tolerable while I was waiting for the gluten free diet to help. I still take the Bentyl if I get accidental gluten.
posted by TooFewShoes at 4:13 PM on March 8, 2011 [3 favorites]
I totally agree that you should ask your GP for the endoscopy ASAP. If I were you I'd call the GI doctor and explain things and ask them if they can move you up. I went to the ER with my pains and had an endoscopy the next day, I saw the doctor about the results within a week.
If you do have to wait for the endoscopy ask your GP for some meds, there are some prescriptions that might help. I was given Bentyl and Levsin that are supposed to help the pain by keeping the gut muscles from spasming. Here's an article about them on WebMD. It didn't solve the issue, but they made life a little more tolerable while I was waiting for the gluten free diet to help. I still take the Bentyl if I get accidental gluten.
posted by TooFewShoes at 4:13 PM on March 8, 2011 [3 favorites]
I was in a similar position (suspected a gluten intolerance well before my GI appt) and decided to just go gluten-free. Didn't get the biopsy, and the GI doc thought the idea of re-glutening if going without made me feel better was patently absurd. There's an increasing body of evidence that gluten intolerance is fairly widespread, and the thing is, an elimination diet is free.
(My understanding of the presence of tTG (transglutaminase) enzymes indicates that your body is having an autoimmune reaction to one of the constituents of gluten. I am not a nutritionist, but I have spent the last three weeks listening to Robb Wolf's podcasts.)
posted by restless_nomad at 4:59 PM on March 8, 2011
(My understanding of the presence of tTG (transglutaminase) enzymes indicates that your body is having an autoimmune reaction to one of the constituents of gluten. I am not a nutritionist, but I have spent the last three weeks listening to Robb Wolf's podcasts.)
posted by restless_nomad at 4:59 PM on March 8, 2011
Check your MeMail.
posted by TooFewShoes at 5:06 PM on March 8, 2011
posted by TooFewShoes at 5:06 PM on March 8, 2011
Best answer: Transglutaminase belongs there. It is part of you and you'd miss it if it were gone until you bled to death. It's the antibodies that are the problem which is why celiac disease is an autoimmune disorder and not a food allergy.
There are factors that might matter in how your doctor thinks you should proceed - the one that occurs to me is that it might matter which isoform of transglutaminase you're have issues with, but in my scientific opinion, 128 is a shit-ton more than 6.
So yeah - call and see what your doctor has to say and if you can get things moved up a bit.
posted by Kid Charlemagne at 6:54 PM on March 8, 2011
There are factors that might matter in how your doctor thinks you should proceed - the one that occurs to me is that it might matter which isoform of transglutaminase you're have issues with, but in my scientific opinion, 128 is a shit-ton more than 6.
So yeah - call and see what your doctor has to say and if you can get things moved up a bit.
posted by Kid Charlemagne at 6:54 PM on March 8, 2011
Was that the only test, or did you get a full panel? If you have a full panel, you might post at celiac.com. The people there are really good at interpreting (not a doctor yada yada) test results.
Definitely don't stop eating gluten until you get an endoscopy. However, remember that there's a high possibility of false negatives, both on the blood work and the biopsy. Even if it comes back negative, still give the gluten free diet a shot. I had a negative biopsy (I think it was done incorrectly) and I haven't eaten gluten in months. I would never, never go back and I didn't need a doctor's approval to make me stick to the diet. The idea that the biopsy showing flattened villi is the gold standard doesn't necessarily hold water anymore.
I have been off gluten since October, and I am definitely still healing, but I knew that going gluten free was the right thing to do within thirty-six hours. No joke.
posted by sugarfish at 8:31 PM on March 8, 2011
Definitely don't stop eating gluten until you get an endoscopy. However, remember that there's a high possibility of false negatives, both on the blood work and the biopsy. Even if it comes back negative, still give the gluten free diet a shot. I had a negative biopsy (I think it was done incorrectly) and I haven't eaten gluten in months. I would never, never go back and I didn't need a doctor's approval to make me stick to the diet. The idea that the biopsy showing flattened villi is the gold standard doesn't necessarily hold water anymore.
I have been off gluten since October, and I am definitely still healing, but I knew that going gluten free was the right thing to do within thirty-six hours. No joke.
posted by sugarfish at 8:31 PM on March 8, 2011
Response by poster: Got the endoscopy done yesterday and a biopsy came back positive for Celiac. Where there's smoke there's fire I guess. I appreciate everyone's advice; I wound up pigging out on every pastry I could get this past weekend until Sunday when I officially broke up with gluten. Had the biopsy done on Tuesday and got the diagnosis today, Wednesday, so that wound up rolling pretty fast.
posted by ShadePlant at 4:29 PM on March 16, 2011
posted by ShadePlant at 4:29 PM on March 16, 2011
Welcome to the club! Feel free to drop me a line if you need sympathy, recipes, or an ear to bitch to. I've been more or less gluten-free for two years, and I've managed to come to terms with it.
posted by restless_nomad at 4:32 PM on March 16, 2011
posted by restless_nomad at 4:32 PM on March 16, 2011
Ditto restless_nomad. It takes some adjusting but once you've switched over I think you'll feel much better.
posted by sugarfish at 12:01 PM on March 20, 2011
posted by sugarfish at 12:01 PM on March 20, 2011
This thread is closed to new comments.
In real short: this may be indicative of celiac, but you will probably need a small bowel biopsy to confirm. Don't go GF just yet, let your doc guide you-- the biopsy will look better than it should if you go GF before you have it.
posted by fairytale of los angeles at 2:38 PM on March 8, 2011