Did You Have + Ttg?

[Meg123]

As per usual, I'm going crazy waiting for my results. this time the results are for the biopsy. I might get them next week.

I should have put this poll on here 8 weeks ago, but it didn't occur to me then. I've been reading other research etc, but this would have been a great place to start.

Ok, so I'm trying to establish the likelyhood of getting a positive biopsy after having positive ttg.

I've read some articles that say, once you have enough ttg in your blood for a + result, then it must be so high in your intestine that there should already be the damage.....

So, if you had +ttg, was your biopsy + or - ?

THANK YOU.

[WinterSong]

My entire Celiac panel levels were extremely high. My doctor actually had me stop eating gluten the week before my biopsy (at the time I didn't know any better to say no and wait). After my endoscopy he told me that I showed all of the internal signs of Celiac, and my biopsy came back positive.

Just try to relax as much as you can. And even if it does comes back negative (as there are many false negatives), remember - your blood test was positive. Biopsy or not, welcome to the Celiac club.

[Meg123]

  On 6/16/2011 at 12:19 PM, JessicaNYC said:

My entire Celiac panel levels were extremely high. My doctor actually had me stop eating gluten the week before my biopsy (at the time I didn't know any better to say no and wait). After my endoscopy he told me that I showed all of the internal signs of Celiac, and my biopsy came back positive.

Just try to relax as much as you can. And even if it does comes back negative (as there are many false negatives), remember - your blood test was positive. Biopsy or not, welcome to the Celiac club.

Thank you for the lovely welcome

See everything else on my panel was negative, and my ttg wasn't overly high, but definately positive. It was borderline 18 months ago, and is obviously increasing. I just have to be patient a teeny bit longer

looking forward to seeing the results on this poll.....

[sa1937]

I was highly positive on my celiac panel and my biopsy was also positive.

[Greenling]

I did an elimination diet (which was gluten-free as well) for four weeks before my blood tests were drawn and my tTG was still off the charts. I have no idea how high it must have been.... Needless to say, the biopsy (done a week later) was positive as well.

Good luck!

[Roda]

Both positive here. My 6 year old had a positive ttg last Nov. but we didn't do a biopsy on him.

[Mummyto3]

So far we've just had a positive ttg of 128. I've googled everywhere to find anyone who had this and then went on to have a positive biopsy and managed to find two people, one child and one adult with exact same ttg and both had positive biopsies. Will post on here once we get results but biopsy date still not through.

[Skylark]

There was a study on people with positive TTG and GI symptoms but negative biopsy. They had all the metabolic markers of the people with celiac disease, rather than looking like the people who were controls. In other words, there is some strong evidence that if you have TTG and other conditions like Crohn's ad RA have been ruled out, you are celiac.

[adab8ca]

I had very high TTG (>200) some gliadin antibodies and no GI symptoms that are considered "typical" (no D or C but nausea and LOTS of unexplained weight loss)...

My biopsy showed total villous atrophy and the doc said he actually saw damage with the naked eye.

My celiac diagnosis was a total fluke as the neuro was trying to rule out stuff and ran every test he could think of (since I had terrible small fiber neuropathy)

[October3]

I'm answering for my 6 yr old son. His tTG was not super high, but was "moderately elevated" at 48. tTG went down to 21 or so without going gluten-free, and his biopsy was negative. No GI symptoms except malabsorption issues (anemia, etc). So as of this point we don't have a diagnosis.

[busymomof5]

My Ttg was only 4 (weak positive range was 4-10). My biopsy was definitely positive.

[October3]

  On 6/17/2011 at 9:18 PM, Skylark said:

There was a study on people with positive TTG and GI symptoms but negative biopsy. They had all the metabolic markers of the people with celiac disease, rather than looking like the people who were controls. In other words, there is some strong evidence that if you have TTG and other conditions like Crohn's ad RA have been ruled out, you are celiac.

Can you tell me where I might find this study? I would love to read it since it seems to be very relevent to our situation.

[Skylark]

  On 6/18/2011 at 4:17 PM, October3 said:

Can you tell me where I might find this study? I would love to read it since it seems to be very relevent to our situation.

I'm sorry. I usually include references but I was so tired and brainfogged when I posted that, I didn't have the energy or wherewithal to look it up. I come here for company sometimes when I feel really bad.

This is a pretty good article that explains the research and its implications for people with positive blood tests. Basically, because people with positive bloodwork and negative biopsy have the same metabolic markers as celiacs with full villous atrophy, they recommend gluten-free if you're positive on tTG or EMA.

Open Original Shared Link

Here is the Pubmed link to the original abstract.

Open Original Shared Link

In the paper it explains the potential celiacs as: "Patients with potential celiac disease were all positive for anti-tissue transglutaminase antibodies (tTGA); all but one were also EmA positive; histological examination revealed an apparently normal mucosa (Marsh 0) in 9 subjects, just an increase in intraepithelial lymphocytes (Marsh 1) in 12 and increased intraepithelial lymphocytes coupled with crypt hyperplasia (Marsh 2) in 8 patients."

[quandary]

  On 6/16/2011 at 6:26 PM, Roda said:

Both positive here. My 6 year old had a positive ttg last Nov. but we didn't do a biopsy on him.

My son has had, what the endocrine calls, a 'trace elevation' of his TTG over the past several years (and he has type 1 diabetes, his sister & dad have type 1, his sister has celiac, his DQ8 gene positive, and gluten sensitivity was indicated by Dr. Fine's stool sample testing done many years ago)....but no endoscopy. He started a gluten free diet about 3 1/2 months ago. We're wondering whether to continue it or not. What happened when your son, after 4 1/2 months gluten free, was challenged with gluten - did he have symptoms? What other blood-work/symptoms did he originally exhibit that made you choose gluten free for him? Thanks!!

[October3]

  On 6/19/2011 at 8:40 PM, Skylark said:

I'm sorry. I usually include references but I was so tired and brainfogged when I posted that, I didn't have the energy or wherewithal to look it up. I come here for company sometimes when I feel really bad.

This is a pretty good article that explains the research and its implications for people with positive blood tests. Basically, because people with positive bloodwork and negative biopsy have the same metabolic markers as celiacs with full villous atrophy, they recommend gluten-free if you're positive on tTG or EMA.

Open Original Shared Link

Here is the Pubmed link to the original abstract.

Open Original Shared Link

In the paper it explains the potential celiacs as: "Patients with potential celiac disease were all positive for anti-tissue transglutaminase antibodies (tTGA); all but one were also EmA positive; histological examination revealed an apparently normal mucosa (Marsh 0) in 9 subjects, just an increase in intraepithelial lymphocytes (Marsh 1) in 12 and increased intraepithelial lymphocytes coupled with crypt hyperplasia (Marsh 2) in 8 patients."

Thanks very much for the links. Looks like maybe the next step is to request an EmA. I also need to find his path report and re-read it - can't remember if there was an increase in intraepithelial lymphocytes.

[Skylark]

  On 6/21/2011 at 1:02 AM, October3 said:

Thanks very much for the links. Looks like maybe the next step is to request an EmA. I also need to find his path report and re-read it - can't remember if there was an increase in intraepithelial lymphocytes.

Looking over the path report makes a lot of sense.

EMA is an old test where they see if the antibodies react with monkey esophagus. The main antibody that reacts has since been shown to be TTG. I don't know that EMA would really give you new information since you already know he has the autoimmunity.

What you might find more valuable is the newer anti deamidated gliadin peptide (DGP) antibody test. It's more sensitive than EMA or TTG and specific for celiac. As with any celiac test, your son has to be on a full gluten diet to be likely to get a positive result.

[Roda]

  On 6/20/2011 at 5:23 PM, quandary said:

My son has had, what the endocrine calls, a 'trace elevation' of his TTG over the past several years (and he has type 1 diabetes, his sister & dad have type 1, his sister has celiac, his DQ8 gene positive, and gluten sensitivity was indicated by Dr. Fine's stool sample testing done many years ago)....but no endoscopy. He started a gluten free diet about 3 1/2 months ago. We're wondering whether to continue it or not. What happened when your son, after 4 1/2 months gluten free, was challenged with gluten - did he have symptoms? What other blood-work/symptoms did he originally exhibit that made you choose gluten free for him? Thanks!!

Sorry it took so long to reply, I have been on vacation. I had him tested about a month after I was diagnosed and his blood work was negative and he was showing no other signs. Appx. June 2010 he started having (his language mind you he was 5 at the time) puke burps and tummy aches. The stomach aches occured at random times and would be anywhere from severe (he would lay down and not play and I would have to rub his tummy) to mild where he would mention it and then go off and play again. On the few occasions I helped him in the bathroom after a BM I noticed fat floating in the toilet. He was also having an increase in rhinosinusitis. I took him to a new allergist to be retested (negative on skin testing at 14 months old and again at 3.5yrs) suspecting maybe some food allergies. I also requested his celiac panel be redone. The only thing to show positive was his Iga ttg. With that positive test, his symptoms and my celiac diagnosis we opted out of biopsy and went gluten free. Later my husband regretted that decision, but I was unwilling to put him back on gluten for 3 months at that point. After the 4.5 months of gluten free we did do a gluten challange. It only lasted three days because my husband could't stand what it was doing to him. Within 12 hours he complained of a belly ache. The next day it was still bothering him (he wouldn't admit to it though because he was having fun eating pizza and donuts) and moped around on the couch and wanted me to rub his tummy. He also began having sever mood swings. One minute he was fine the next crying over nothing. He started having temper tantrums again. He also became constipated for about 5 days, usually goes everyday like clockwork, and I had to give him something so he could go. I think it is pretty clear from the challange he shouldn't have any gluten. He has been glutened twice unintentionally since then and same thing happened.