Doctor Unsure Of Blood Test Results

[sandsurfgirl]

Last Wed. I got my results over the phone that my IgA was high from the nurse and today I went for my follow up. I started the gluten free diet and my symptoms are resolving in a big way. I KNOW I have celiac disease. It makes my whole life make sense but today my doc said she doesn't know how to interpret the results and she wants me to see a gastroenterologist.

I am very nervous to see another one since 2 of them misdiagnosed me years ago and refused to do the blood test because I was overweight since according to them celiac patients are always thin. (BIG EYEROLL)

So here's my lab results.

IGA SERUM Celiac Disease 213 reference range is 81-463

Gliadiin Antibody IGA 28 positive is greater than 17 so it's quite high

TTG Antibody IGA 3 negative is less than 5 so it's low

If this gastroenterologist tells me I do not have celiac disease I'm going to lose it. After my experiences and everything I've read I have no faith in an American GI doc to have any clue about this disease because so many of them are misinformed and don't bother to get informed because there is no drug cure.

I'm so frustrated right now. No matter what they say, I will do the diet and make the changes permanent, but I want the doc to run panels on my vitamins and minerals but she won't do it unless the GI doc says I have celiac. GRRR Seriously frustrating.

[ravenwoodglass]

With a postive blood test and resolution of symptoms gluten free chances are really, really good that you are one of us. Now for the bad news, if you want to see a GI doctor you need to get back on gluten ASAP. The GI doctor will want to do an endo and you need to be on gluten for any chance of it coming in with an accurate result. Even on a full gluten diet with full blown symptoms it is still possible to have a false negative on the biopsies. The choice of whether to put yourself through that is up to you.

Have you told your doctor about the success you have had with the diet? If you have the doctor should IMHO be listening. You may want to consider finding a more receptive doctor who is a bit more celiac savvy. One other route you could try as far as testing for vit and mineral levels might be your OB/GYN if you are female. They are also good for a baseline bone density screening which is another test you should have done.

[Jennifer2]

There are a number of people who are self diagnosed, don't worry about the doc.

I've also read that some people don't want a "real" diagnosis because of health insurance reasons.

Bottom line is, if the diet makes you feel better, stay on it.

[sandsurfgirl]

With a postive blood test and resolution of symptoms gluten free chances are really, really good that you are one of us. Now for the bad news, if you want to see a GI doctor you need to get back on gluten ASAP. The GI doctor will want to do an endo and you need to be on gluten for any chance of it coming in with an accurate result. Even on a full gluten diet with full blown symptoms it is still possible to have a false negative on the biopsies. The choice of whether to put yourself through that is up to you.

Have you told your doctor about the success you have had with the diet? If you have the doctor should IMHO be listening. You may want to consider finding a more receptive doctor who is a bit more celiac savvy. One other route you could try as far as testing for vit and mineral levels might be your OB/GYN if you are female. They are also good for a baseline bone density screening which is another test you should have done.

There is no way I will torture myself like that for a biopsy that may be inconclusive anyway. If I load up on gluten I will end up hospitalized. I have been misdiagnosed my whole life and I'm not going to let them turn me into their guinea pig any longer.

I have been on a low gluten diet for years because I figured out that wheat bothered me a very long time ago. I have avoided whole wheat for 20 years because I would get such pain I couldn't breathe. The allergist told me since I came up negative to wheat allergy that it was an intolerance so I could eat it in moderation which is what I've done. But whenever I would eat some serious gluten like pizza or lots of pasta or whatever I would get really sick. And in general I'm always sort of sick. I always have a sinus infection, or stomache problems or something. Until I went gluten free 8 days ago.

I have had so many attacks that landed me in the ER and every time the GI doc said it was IBS. This time the ER doc said celiac and now one of my blood tests is positive which is enough for me.

The problem is that I need to have the lab work done to see if I'm deficient in any vitamins, etc. I have approval for a bone density scan because of my hypothyroidism so I'll go get that done.

I'm so angry that these doctors are so ignorant about food issues. UGH

[ravenwoodglass]

I'm so angry that these doctors are so ignorant about food issues. UGH

Your not alone in that.

I am glad you have been able to finally figure out what is going on. Maybe after your problems have been resolved for a while your doctor might wake up. I am glad your feeling better and think your making the right choice to refuse the challenge. I let mine talk me into one and the results were pretty severe.

[sandsurfgirl]

I went and searched the doctors forum on this site here and found a doctor who is really close to me that somebody recommended. The poster said he is very knowledgable about celiac and food intolerances. I called my insurance and he's covered so tomorrow I'm switching. I'm 40 years old, have been to numerous numerous docs who were clueless and these people aren't getting another penny of my insurance money or my $40 copay every time I go for a visit. I'm moving on and I'll keep switching until I find a good one.

I've already been through heck with my thyroid too, so now with this I'm fed up.

[nora-n]

Hi, the IgA test is just a total IgA to check if the IgA type blood tests are valid. It is not a celiac test per se.

The antigliadin test is the old test for celiac, and it is known to be positive also with gluten intolerance (which is just as severe as celiac)

the ttg test was almost positive, ideally it should be 0.

I think it means something that it had a number.

There is another test which is very very specific, the endomysium antibody test but it was not done.

Over-weight patietns often have patchy celiac which is quite common. The rest of the guts are programmed to absorb extra much food or calories or something, in reaction to starving mode by a lot ov villi being damaged.

[sandsurfgirl]

Hi, the IgA test is just a total IgA to check if the IgA type blood tests are valid. It is not a celiac test per se.

The antigliadin test is the old test for celiac, and it is known to be positive also with gluten intolerance (which is just as severe as celiac)

the ttg test was almost positive, ideally it should be 0.

I think it means something that it had a number.

There is another test which is very very specific, the endomysium antibody test but it was not done.

Over-weight patietns often have patchy celiac which is quite common. The rest of the guts are programmed to absorb extra much food or calories or something, in reaction to starving mode by a lot ov villi being damaged.

Thanks Nora! I'm hoping that the new doctor I'm going to will be able to make sense of all of this. Maybe he can order the better blood test too.

[Wolicki]

Thanks Nora! I'm hoping that the new doctor I'm going to will be able to make sense of all of this. Maybe he can order the better blood test too.

I am glad you are going to see Dr. M. I love him. When you go for your first visit, take a copy of the labs with you. Since you are already gluten free, additional blood tests are not going to be accurate. IMHO, you already have your diagnosis, via positive blood tests and positive dietary response. The doc was more than willing to accept a Celiac diagnosis for me with the exact same thing, and was fine with not doing an endo to confirm. He thinks the gluten challenge is barbaric. He should be very willing to run the vitamin/mineral panels based on your blood tests. He takes care of my thryoid, too I really like him because he doesn't insist on sending you to a million specialists. Feel free to email me anytime if you have questions:)

Janie

[Gemini]

Last Wed. I got my results over the phone that my IgA was high from the nurse and today I went for my follow up. I started the gluten free diet and my symptoms are resolving in a big way. I KNOW I have celiac disease. It makes my whole life make sense but today my doc said she doesn't know how to interpret the results and she wants me to see a gastroenterologist.

I am very nervous to see another one since 2 of them misdiagnosed me years ago and refused to do the blood test because I was overweight since according to them celiac patients are always thin. (BIG EYEROLL)

So here's my lab results.

IGA SERUM Celiac Disease 213 reference range is 81-463

Gliadiin Antibody IGA 28 positive is greater than 17 so it's quite high

TTG Antibody IGA 3 negative is less than 5 so it's low

If this gastroenterologist tells me I do not have celiac disease I'm going to lose it. After my experiences and everything I've read I have no faith in an American GI doc to have any clue about this disease because so many of them are misinformed and don't bother to get informed because there is no drug cure.

I'm so frustrated right now. No matter what they say, I will do the diet and make the changes permanent, but I want the doc to run panels on my vitamins and minerals but she won't do it unless the GI doc says I have celiac. GRRR Seriously frustrating.

Your Gliadin antibody test (IgA) was high, meaning your are producing antibodies to gluten in your blood. This is a pretty reliable test for those who are serio-positive. A low tTg may possibly mean that you haven't had enough damage done to your intestinal tract to show damage in blood work....yet.

So, having a high AGA IgA and negative tTg means you are either gluten sensitive, without full blown Celiac, or you do have Celiac but your blood work is not showing all that's going on. This is common. Doctors are trained to look for full blown Celiac and anything else they will not put their stamp of approval on.

FYI....none of these tests will show zero, even in non-Celiac patients. This is why they have a range for normal. Concerning the AGA IgA test, you do want the numbers to be as low as possible in the normal range because this is the test which checks for dietary compliance, after a diagnosis for Celiac.

So, if you go totally gluten-free, that number should come down and if you get it into the low normal range, that's a good thing. There really is no need to see a GI doc, unless you want an endoscopy to see what your gut looks like and you need the official stamp to stay on the diet. Sounds like you know what is going on so it's your decision on what you end up doing. Good luck and I hope you continue to feel better!