Questions About Test Results

[Cuba]

My daughter was recently diagnosed with celiac (resulting from tests up to and including a biopsy) causing the rest of the family to get tested too. While my son and wife both came back with all numbers within normal range, my test results were different. Now keeping in mind that the only symptom that I can honestly say that I have ever displayed is heartburn (never really considered it to be anytihg serious as I am a frequent eater of spicy food, caffeine, etc.). When my results came back I was advised that with my numbers and my daughter's diagnosis, that I too had celiac. No big deal really, we were already gluten-free at home based on my daughter, so I have started a gluten-free diet away from home as well (i'll miss you Budweiser and deli sandwiches). After further review of my numbers when and comparing them to my daughter's, my wife and I started playing internet Dr. and suddenly we weren't so sure. My Deamidated Gliadin Abs, IgA was high at 17.6 (range 0-10), but the tTG can back <1 (negative 0-3). From my understanding the tTG is the most telling number to look at.

So....the initial diagnosis was provided to us by a nurse over the phone (I believe this is how it went, my wife talked to them, not me, so I could be wrong), but today we called the Dr. back. As of today I was told that the test results can be considered inconclusive and that I do NOT have to be on the gluten-free diet at this point becasue my test results are not NECESSARILY indicative of celiac and they will probably want to do genetic testing or a scope in either case I would need to be on gluten. If for some reason I start having symptoms, I should let them know, but for now just pay attention to my body from now until the appointment.

Can anybody offer an opinion, insight, more info, etc.? Thanks in advance for anything you may have to offer.

[ShayFL]

Diagnosing Celiac is complicated at best. The fact that you are "gluten lite" can make you have a FALSE NEGATIVE on your biopsy. Since you are going that route (biopsy) (and I think you should), you need to really start eating gluten. Every lunch should be gluten laden....pasta....pizza....big hoagie rolls, beer, etc. Every morning stop somewhere on the way to work and get something with gluten. Bagels, muffins, etc. Sneak it in wherever you can. Eat bagel crisps or the like for a snack each day. Eat lots of it so if you DO have Celiac it will show up with the scope.

Push for the GENETIC tests for everyone.

Here is the thing, there are lots of people who have "no symptoms" or "minor" symptoms but they DO have Celiac. The scariest thing is the unseen/unkown damage that comes from untreated Celiac (i.e. gluten-free diet). Heartburn is a pain in the butt, but you may not know you are developing lymphoma or intestinal cancer until it is too late. These are just two diseases associated with untreated Celiac. While you are going on your merry way eating gluten thinking you have no symptoms, your body's immune system could be attacking your beta cells in your pancreas leading to Diabetes. Or autoimmune thyroid disease. Or any number of autoimmune diseases associated with untreated Celiac.

Of course you will miss your beer and deli sandwhiches, but if you DO have Celiac and dont treat it, your family will miss YOU.

So make sure the diagnosis process is thorough by eating a HEAVY gluten diet before testing:

Ask for a FULL Celiac panel if they didnt run one.

Biopsy

Genetic Testing

And if it were me, with a POS daughter, regardless of the tests, I would go gluten-free (after all testing is done) and see if the heartburn went away. You may also find other things go away that you didnt realize were a problem. This is common.

[Mother of Jibril]

Welcome to the group!

You're right that anti-gliaden is not as specific for celiac disease as TtG. The thing is... it does indicate that your immune system is making antibodies in response to gluten. You might not have celiac disease... you might not even have the genes for it... but you could easily turn up with some other autoimmune disease if you keep eating gluten.

I think it's a great idea to get the endoscopy... and you do need to keep eating gluten (a lot of it) if you want to have that test. The genetic test can be done at any time, gluten-free or not. The good thing about the genetic test is that it can indicate other disorders you're predisposed to. The bad thing is that it can't diagnose celiac disease (even if you have one of the genes), so if you want to be sure you should get the endoscopy. Just keep in mind that even that test is not foolproof... you can easily get a false negative.

[sbj]

Why do many people keep writing that you have to eat A LOT of gluten before the biopsy? I have read that anywhere from 2 to 4 slices of bread per day was enough. In fact, prior to my own endoscopy, I was simply eating my standard diet, gluten with some meals, no gluten with others. I was only eating one small roll per day. Just wondering if eating a whole bunch and heaps and gobs was a medical recommendation or just based on anecdotal evidence. After all, if the body reacts to even a tiny crumb, why would it take massive amounts to show up on biopsy?

To the original poster, ask your doctor for your blood test records and post your results here along with the lab that did the testing. I do think, however, that the best way to get a celiac diagnosis one way or the other is to look at the celiac panel in concert with biopsy and genetic test. That's exactly what I had done. I think you should eat some gluten everyday but my GI never told me I had to eat massive quantities prior to my blood test (and I did NOT eat massive quantities prior to my biopsy).

Good luck - I hope you don't have it!

[ShayFL]

Just wondering if eating a whole bunch and heaps and gobs was a medical recommendation or just based on anecdotal evidence.

Since NONE of us in this forum are M.D. everything here is anecdotal including your experience sbj.

There are a lot of us in here who got NEG results on Gluten Lite. It makes sense to make sure you are eating enough to cause damage (that is what the biopsy is looking for). Not everyone will get damage from a crumb of bread. Some might need to be eating A LOT to get a positive.

It is up to you Cuba to decide what sounds right for you PLUS what your doctor recommends. And if what your doctor recommends doesnt sound right, use your own instincts as well. They are there for a reason.

[sbj]

I just wanted to be sure I hadn't missed some report that said you had to eat 'massive' quantities. As you know, no one 'knows' how much gluten is required for a positive biopsy (some folks never test positive via biopsy anyways!) and we constantly have folks asking how much is required during challenge. The tone of responses had led me to believe that someone had come upon the definitive answer. So far as I know the jury is out on what is required and most docs and reports I've read recommend 2 to 4 slices bread per day. Thanks for the confirmation!

[Amber M]

My daughter was recently diagnosed with celiac (resulting from tests up to and including a biopsy) causing the rest of the family to get tested too. While my son and wife both came back with all numbers within normal range, my test results were different. Now keeping in mind that the only symptom that I can honestly say that I have ever displayed is heartburn (never really considered it to be anytihg serious as I am a frequent eater of spicy food, caffeine, etc.). When my results came back I was advised that with my numbers and my daughter's diagnosis, that I too had celiac. No big deal really, we were already gluten-free at home based on my daughter, so I have started a gluten-free diet away from home as well (i'll miss you Budweiser and deli sandwiches). After further review of my numbers when and comparing them to my daughter's, my wife and I started playing internet Dr. and suddenly we weren't so sure. My Deamidated Gliadin Abs, IgA was high at 17.6 (range 0-10), but the tTG can back <1 (negative 0-3). From my understanding the tTG is the most telling number to look at.

So....the initial diagnosis was provided to us by a nurse over the phone (I believe this is how it went, my wife talked to them, not me, so I could be wrong), but today we called the Dr. back. As of today I was told that the test results can be considered inconclusive and that I do NOT have to be on the gluten-free diet at this point becasue my test results are not NECESSARILY indicative of celiac and they will probably want to do genetic testing or a scope in either case I would need to be on gluten. If for some reason I start having symptoms, I should let them know, but for now just pay attention to my body from now until the appointment.

Can anybody offer an opinion, insight, more info, etc.? Thanks in advance for anything you may have to offer.

I agree on the full set of tests metioned here. I was gluten free with my blood test and biopsy. They were negative. I had already done the "challenge diet" through my allergist and discovered the gluten problem, so I was stumped. I decided to have the gene test for that reason. As it turned out, I was gluten sensitive with no upper intestinal damage. I have gluten ataxia (serious) from gluten sensitivity! Also lower colon problems and many other health problems. Because my gene test was able to determine that I have a gene from both parents, it makes it worse and also means my children (1) have, for sure, at least one gene. My daughter has 3 auto-immune diseases at the age of 34, most likely caused by the gluten. This is nothing to mess with. I do not have full blown celiacs, no, but had I gone strictly by the celiac tests, I would have gone on assuming I could have eaten the poison. I would have never understood why I couldn't stand up straight with out running into walls, etc, etc....All other tests (MRI etc) had come back negative too. Now, 4 or more months off of gluten, I am starting to pull it together. So I would push for the gene test, especially if the celiacs is negative! (One of my worst symptoms was heartburn-gerd)