Positive Blood Test, Negative Biopsy....dr. Is Convinced

[Tamesis]

Hi everyone,

I'm brand new here, but not new to the idea of Celiac disease and gluten free. About 6 years ago I was having all sorts of abdominal symptoms, and being my father has Celiac (Although he does not eat gluten-free), the Doctor ran a TTaG?, which was high positive. I had a gastroscopy and biopsies, which were negative, and was told I do not have celiac, it must be IBS.

Fast forward to two years ago, I had a really bad flare of intestinal symptoms....D all the time, 6+ times a day, abdominal pain, vomiting, the works. I started undergoing all sorts of testing for IBD, as that also runs in my family. Multiple colonoscopies, blood tests, and specialists later, nothing has been found. They ran another TTaG (I think that's it...Maybe TTG?) which was again positive, another gastroscopy/biopsy negative. All sorts of other tests for Lupus, Addisons, Cushings, etc., all still in the works.

So, I saw my GP yesterday (I had to switch due to a move last year, so she has come into this part way), and we were talking about all the results, etc., and she said "I assume they have tested you for Celiac", to which I told her all of the above...Positive blood tests, but negative biopsies. Well, she nearly blew a gasket, saying that it is ridiculous that they have not tried a gluten free diet with me being the blood tests have been positive, and that if you have a + blood test, it is Celiac, end of story.

So...My question is I guess, has anyone received dx. with only a positive blood test? I was eating gluten at the time of the biopsies, but I'm not a HUGE gluten eater, i've heard you may have to have 4 slices a bread, or equivilent, a day to test positive via biopsy? I'm just a little lost, wondering if I should accept this dx. or keep pushing in case this is not the problem.....

Additional symptoms include chronic fatigue, depression, itching, abd. pain, diarrhea, bloating, excessive gas, joint pain

Thanks for reading, and any suggestions!

Pam

[mushroom]

Hello and welcome to the board.

I wonder why they didn't run any of the other celiac tests, since the tTG is not totally specific to celiac and can be caused by other things. The usual procedure if the tTG is positive is to run the EMA which is celiac specific. Or there is the newer DGP which is very celiac specific. If they corroborated with other celiac tests then it would be much more likely that you are celiac. The damage in the small intestine can be very patchy and hard to find on biopsy especially if they only take one or two samples. If your father has celiac you very likely do too.

I too wonder why nobody has suggested the gluten free diet for you. A positive response to the diet (and the genetic testing if you decided to have it) would negate the nonpositive biopsy, for which, by the way, there is a 20% error rate. If I were you, I would do the diet.

[domesticactivist]

You got a good one with that new doctor! All your symptoms are classic reactions to gluten and I think it's very likely you will be much healthier and happier on a strictly gluten free diet. Try it!!!

The diagnostic criteria for celiac is shifting away from requiring biopsy for diagnosis.

It is possible to have false negative biopsies for a number of reasons. Here are just a few:

- Not enough samples taken

- Samples taken from the wrong places

- Inexperienced/badly educated lab reviewed the samples inaccurately

- Not enough damage done YET at the time of biopsy

There are a few other possible reasons for elevated anti-tTG-IgA, but generally it's a good indicator of celiac disease, especially if numbers drop in response to a gluten-free diet. Some of the other potential causes of elevated tTG numbers also respond favorably to a gluten-free diet.

Trust your new doc on this one!!! Even if it's not celiac, the symptoms you mention can be caused by non-celiac reactions to gluten. Try going gluten-free!

[domesticactivist]

One more thing - you mentioned your testing was 6 years ago. If you are on a diet containing gluten now and really want more testing, do it now, before going gluten-free. I'd want a full celiac panel and probably another endoscopy as well, to get baseline information for follow-up testing down the road.

[nora-n]

another thing, the person looking at the slides might have not looked close enough. There are a lot more subtle changes going on with low-grade celiac other than total villous atrophy...

And there is special staining for showing IEL, and more than 2.3 on each villi tip is celiac now, maybe they did not do that.

We have also heard from people that after they requested the biopsy description, it said villous blunting, and it was not picked up. Villous blunting IS celiac.

[domesticactivist]

another thing, the person looking at the slides might have not looked close enough. There are a lot more subtle changes going on with low-grade celiac other than total villous atrophy...

And there is special staining for showing IEL, and more than 2.3 on each villi tip is celiac now, maybe they did not do that.

We have also heard from people that after they requested the biopsy description, it said villous blunting, and it was not picked up. Villous blunting IS celiac.

Open Original Shared Link

[Skylark]

If you have the antibodies and feel better on the diet, you're celiac. Rather than trying to have other invasive procedures, I'd suggest you try the diet strictly for a few months and see what happens. You might be pleasantly surprised at how much better you feel.

Yes, it's possible eating only small amounts of gluten could have made your biopsy less severe.

[Tamesis]

Thanks everyone.

I think that I will just continue with the gluten-free diet, and if it helps, leave it at that.....My Dr. is willing to give me the dx. without positive biopsy, and I'd just rather not go through that again! I will likely see if I can get the actual pathology report though, and possibly a second opinion on the slides.

Funny...I've been gluten free for three days and haven't noticed too much difference until I cheated....I was in the toilet within 15 minutes....coincidence? Who knows....but it makes me wonder!!

[domesticactivist]

Sounds like a good plan. As for feeling a difference - I just felt worse when I first went gluten free! It actually took me months off gluten and going on GAPS before I felt better. Having gone on GAPS made me think maybe it was gaps and not the gluten that had helped me.

A year later I did a gluten challenge... the first couple days I felt surprisingly well, then it was all downhill from there. I lasted almost 2 months on gluten before it was completely intolerable.

I've now been gluten free since Thursday morning (three days) and today I woke up without a stomach ache for the first time in ages! My head is getting clearer, too.

Make sure you get to the point where you are truly gluten free. I have a friend who went gluten-free for Graves disease. While her numbers did start to improve, she didn't start really feeling the difference until she switched to certified gluten-free oats. Those "little" things can make a very big difference.

[Tamesis]

Well, The Tissue Transglutaminase Ab IgA was 8....Within normal range it seems? I think i'm going to talk to my doc though about doing a gluten challenge, and then running a total celiac screen....Which tests would you recommend? I don't even know which one it was that came back positive in the past, I need to get all my medical history from my old GP's office and figure this all out. Argh!