Doctor Diagnosed Based On Weak Result. I Am Not Convinced This Is It.

[Jeffiner]

Transglutaminase Iga of 4.5 and all other numbers were normal. The test says that 4.0 to 10 is a weak positive. The four other numbers were normal. She REFUSED to send me to another doctor to confirm it. Doesn't that seem a little strange to diagnose me with Celiac Disease with such a weak positive? Possibly I do have it, but certainly it does not seem enough to confirm such a diagnosis. I have been sick for seven years now. I just don't want to take shots in the dark when a gastro doctor might be able to explore everything that it could be. I also had elevated protein, white blood cells, red blood cells, and occult blood in my urine. Does that have anything to do with Celiac Disease?

[RiceGuy]

I'm no expert on the tests, but I read that it only takes one number to be meaningful. Also, many on this board have had all the tests show negative, but going gluten-free has made all the difference for them.

While you could pursue further testing, such as a biopsy, this is also not reliable enough to count on it. The best test is the one you do yourself - a gluten-free diet. If you feel better, that's what matters. However, the longer you are gluten-free, the less likely any further tests will be accurate. So if you feel you need a doctor's confirmation, then go ahead and get whatever tests you want done. Just know that in the end, no matter what the results say, you should try the gluten-free diet anyway. It's not difficult, and it just might be the best thing you'll ever do for your health.

HTH

[sandsurfgirl]

From everything I have read a positive is a positive no matter how weak or strong it is. Just like a pregnancy test. A faint line is still pregnant no matter what.

In your doctor's defense, she may be trying to protect you by not sending you elsewhere. If you read enough on these boards, you'll see that many of us, maybe even most of us, have been misdiagnosed by countless doctors and many of them have been gastroenterologists. You'll see posts by people who have had the GI docs, who should be experts in this, tell them the most idiotic inane things and have no CLUE about celiac disease or anything dietary.

Once you start down the path with the GI docs and the testing, you may or may not get the answers you are seeking. The biopsy isn't all that accurate, so if it comes up negative it can be wrong.

You need to decide if you can wait months more to second guess what this doctor is telling you and keep eating lots of gluten to make yourself sick enough to have a chance at getting even close to accurate testing.

She sounds like a very good doctor to me. She is taking your blood tests and your symptoms seriously and she's trying to help you get better.

My O.B. said she was sure I had celiac disease 7 years ago based on my history, and the GI doc gave me a laundry list of reasons why there was NO WAY I had celiac. I was thrilled! I mean who wants to live with such a strict diet? I made the mistake of believing him and suffered an extra 7 years. I found out that EVERY symptom he said pointed to NOT being celiac were actually classic celiac symptoms and the guy was dead wrong. I will regret believing him for the rest of my life because I lost 7 years of my life to being sick. I had 2 miserable pregnancies that ended with a crash C section a month early for my 1st one, major illness for my 2nd one, and preterm labor and bleeding with both.

[Jeffiner]

Thank you for the advice. I realize that a gastro doctor might not correctly diagnose it either. The doctor that ordered the test tested for it because I asked her to. She didn't think I had it. She then called to tell me that I did have it and that I could get all the information that I needed online. I have NEVER had a doctor give me a diagnosis and then tell me to "look it up online" for guidance. For me, that made me a little untrusting of her knowledge of it. If I go to the gastro doctor with no results and he disagrees with the diagnosis, I will still try the diet to see if it helps. I guess my real concern is that it has done damage that won't be found without further testing. My whole body hurts, I am short of breath, the glands in my neck hurt......the list is huge. Thank you again for your replies.

[Jestgar]

Or you could assume that she's smart enough to know that she can't give all the info you need.

If you try the gluten-free diet and you don't get better you still have the option of pursuing other testing.

[ravenwoodglass]

"Or you could assume that she's smart enough to know that she can't give all the info you need."

I agree with this. It sounds like you have a good and caring doctor who wants you to get better as soon as you can. There is a bit to learn when we are first diagnosed. It isn't as simple as just don't eat wheat. You have found a great place for the info you need. Read as much as you can and ask any questions you need to. I think the diet is going to make an incredible difference in how you feel.

[tarnalberry]

The diet is a large learning curve. There is no way that she, or anyone who hasn't lived with the gluten free diet, can tell you about the disease without taking hours, over the course of weeks. It's like getting into exercise; some things don't need a trainer, you just do it on your own, but actually finding a schedule, method, location, etc. that works for you takes a much longer time.

[Jeffiner]

I don't know, I found information online, her advice , that said that it could only be diagnosed for certain with a biopsy. Seeing how my reading was 4.5, only slightly above normal, I would think she would want to confirm it with someone that does know about it. I suppose my fear is that something else is wrong because I have been undiagnosed for so long and my symptoms have gotten much worse very quickly. This diet is expensive, not what I want to do if it is wrong because buying groceries now is a stretch.

It made me angry too that I pay out the nose for my health insurance and she denied me a second opinion. I am overwhelmed by this.

I just wondered if anyone else was diagnosed based solely on a weak positive and if they feel the diagnosis was correct. Thanks for the replies.

[mushroom]

The biopsy is considered by doctors to be the "gold standard" for diagnosis, but don't forget that for a long while that was the only test there was, before the blood testing was developed. Of course the GI's want to do the biopsies because they make more money that way. But the biopsy does really not tell you reliably whether or not your symptoms will respond to the diet. It can be totally negative but the diet nevertheless solves all your symptoms. Many of our posters had totally negative tests (blood and biopsy) and positive response to the diet. Yes, eating this way can be more expensive, or more time-consuming, and is a bit of a pain, but how much is your health worth? A good trial of the diet will tell you if this is the way you should be eating. And you don't have to go out and buy all the expensive processed gluten free foods. All the good, healthy foods are naturally gluten free--meat, fish, poultry, vegetables, fruits, rice, nuts and seeds. If eating this way does not help you then you can tell your doctor this and ask for a referral. Under those circumstances I am sure she would give you one and your could explore other possible reasons for your symptoms. But you do have to give it a good trial and eliminate all gluten, including from supplements, prescription medications, personal care products, etc.

[GFinDC]

There are several celiac centers around the country you could check on. They would have doctors who specialize in celiac and could give you advice. Or you could take the free route and do the diet as your own test. You either get better or you don't. But do the diet 100% for several months at least and you should have some idea if it is a gluten problem. Try eliminating soy and dairy also. gluten-free doesn't have to be more expensive. There are plenty of simple whole foods you can eat instead of all the factory processed foods that are actually more expensive. And the gluten-free diet won't hurt you. You would actually be eating a healthier diet which should help even if you have some other condition.