Worried About Getting An "official Diagnosis"

[bakergirl90]

Hello everyone, 

 

So I was told I have Celiac disease by my doctor about 3 weeks ago. (From a blood test, two of the tests for celiac came back positive)

I had been suffering from pretty bad symptoms before the diagnosis and this explained all of them. I was super irritable everyday, bouts of constipation or diarrhea, headaches, occasional nausea, lightheadedness, brain fog (really bad that it has been affecting my job), extreme fatigue, excessive gas (it's ridiculous how excessive it is sorry for the TMI), feeling like I can't get a satisfying meal into my stomach, and stomach pain.  

Since then I have been trying the gluten free diet and I started feeling better within a couple days (not 100 percent) but I showed improvement. Well unfortunately I have been "glutened" twice since I started gluten-free 3 weeks ago. I start getting a lot of those same symptoms I listed above again. The last time was a couple days ago... And as of now, I am suffering yet again. 

 

Anyway what I am trying to get at is, I keep reading everywhere that I cannot have an official diagnosis if an endoscopy (biopsy) test doesn't come back positive. I don't have even a consult appointment with the GI doctor for several weeks and who knows when I can get in for an endoscopy. I am afraid that if I stay gluten free, my test will not come out positive and then I will be in the gray area and not know for sure if this is what is wrong. ( I feel like it is, but everyone around me is also making me feel like I am crazy or something) 

 

Apparently you have to be on gluten for your tests to come back with anything?? But I also know that when I eat gluten I feel like death... I don't want to put myself through all that pain I had before. It's like torture.. But I want a confirmed diagnosis. I am so lost and feel so alone in this. 

 

Here are the blood test results that I got back that were positive: 

 

Gliadin Ab IgA        166 (H) <i>    Ref range: 0 -19 

Tissue Transglutaminase Ab IgA         190 (H) <i>     Ref range: 0 -3

 

Also my "IgA" test was 256      Ref range: 91 - 414 

not sure if that makes a difference 

 

And at the bottom of the sheet I got it also says this: 

Endomysial Ab          result: positive 

 

Does this point to a positive celiac diagnosis with just this information?? 

I know certain celiac blood tests are supposedly not as accurate as others.. 

 

I just had to get this off my chest and talk to people about it who actually know what I am going through.. because no one else understands  Besides my husband who is being very supportive, but even he doesn't know how I feel. 

I am really afraid that I am going to get a negative biopsy result from the endoscopy and then be left wondering if I have Celiac or not. And then no one will believe me and continue to think I am insane and making it up or something. 

[BlessedMommy]

The biopsy is less accurate than the blood tests.

 

Personally, if I were you I would go ahead and schedule a biopsy if it worked out, but consider that you have celiac and eat gluten free regardless of the biopsy's results. The intestine is very long and the biopsy can easily miss the damage, unfortunately. Many people have had positive bloodwork and a negative biopsy and have been sent on their gluten eating way until they got progressively sicker and sicker.

 

Your numbers on the bloodwork are sky high. That is pretty indicative. Combined with your symptoms and improvement on the diet, it seems pretty clear.

 

Bottom line: If it makes you sick, don't eat it. Nobody will ask you for a copy of a biopsy report (except your doctor) and anybody who is your real friend will support avoiding that which is toxic to your body. If you can get it confirmed via biopsy, great! But if not, don't feel like a hypochondriac, because your numbers are high, the symptoms are there & they are improving on the diet.

 

Hope that helps!

[nvsmom]

Welcome to the board.

 

With three positive celiac disease tests, you really do not need a biopsy.  Some doctors get stuck on that because they think you might be the 5% of people with a weakly positive tTG IgA (tissue transglutaminase) whose test result is caused by something else.  Your result is... about 65 times above the normal range - it doesn't get much higher than that! I have no doubt that your positive tTG is caused by celiac disease.  A result that high shows that your body is attacking your intestinal lining.

 

The AGA IgA (antigliadin antibodies) is a test for gluten sensitivity.  It's quite high.  Gluten sensitivity with an attacked intestine means celiac disease.  

 

The Endomysial Ab (EMA IgA) is about 99+% specific to celiac disease. There is less than a 1% chance that a positive EMA IgA is caused by something other than celiac disease.  When the EMA is positive it basically means that it is trying to wipe out the top layer of your intestines because of the damage initially caused by the tTG IgA.  

 

If you had the biopsy done, it would probably show damage. That being said, the biopsy can miss up to 1 in 5 celiacs, confusing the diagnosis process for some.  If you feel comfortable going gluten-free with those (very definitive) tests, then you do not need the biopsy.  Some like to have it for that extra push to go gluten-free, and others like to have it in case they need to refer back to it later, but it won't help you get better in anymore. Go gluten-free if you are happy with your tests.... Well, not happy!  LOL Satisfied maybe?

 

If the biopsy is soon, you could still do it while gluten-free.  With tests like yours, I wouldn't be surprised if there is still damage to see a few weeks or even months down the gluten-free road - but that's just a guess.

 

BTW, I had a positive tTG IgA and EMA and skipped my biopsy. Those tests were enough for me, so I'm probably a bit biased against doing the biopsy. I think they are more useful when tests are negative but celiac disease is still suspected, and not when one already knows the patient has celiac disease.... My rant. Sorry.

 

Welcome again to the boards.  I hope you continue to feel better quickly!  

[beth01]

What Ruth and Nicole said ^^^.  If you have a doctor that insists on getting an endo and biopsy with results like yours, get a different doctor.  We know you have celiac, you now know you have celiac, another couple thousand dollar test isn't going to change any of it.

 

Read the newbie thread under the "coping" section and learn about cross contamination.  Good luck and welcome to celiac.

[SMRI]

Just another suggestion, if you want the biopsy just to cover all the bases, have your doctor call in the test and set the appointment with the GI.  They can usually get you in much faster.

[Georgia-guy]

Bakergirl, welcome the the forum!

Your tests can't even see the normal range. It's like your test results are the top of Mount Everest and normal the the base of the mountain. Your doctor ran 3 celaic tests and all 3 came back positive. If your doctor insists on a biopsy, which is pointed out has a 20% chance of a false negative, he probably wants the money from it.

Your blood tests, combined with an improvement on a mostly gluten free diet screams celiac. (As far as the gluten free diet, it gets easier! But like Beth said, check out the "newbie" thread under "coping" for great tips! And then swing by the "what's for dinner?" Thread and share some recipes!)

As far as fully interpreting your test results, the only one nobody explained is the one you seem confused about it's purpose...the "IgA" test that was 256. That test is a control test to determine your overall IgA level. A low range on that test would be a hint of possible celaic, and tell your doctor that any celiac specific IgA tests would be invalid. Since your numbers there were "normal" (and if my math at midnight is correct, they are smack dab in the middle of the normal range), it tells is that your IgA based tests are accurate and can be used for diagnostic purposes.