"confident it's not celiac" & how important is an "official" dx?

[drejo.mcwes]

So my daughter's doc wrote me back today that we can be "confident" she does not have celiac, and I confess I was surprised.
She has stomach pain that comes on when eating gluten, and goes away when gluten free. She gets weird, scaly/scabby rashes (not eczema) periodically and has consistent diarrhea and bloating. She's had labs done three separate times: DGP was weakly positive each time, ttg-iga was 3X the upper limit twice and 6X the upper limit once, and EMA was also positive. She also has two siblings with biopsy verified celiac disease.

But she's had two biopsies that failed to find any damage.

Quote from her doc: "This means that she does NOT have celiac disease. People can develop celiac autoantibodies that are sometimes transient, or they can persist and yet never progress to celiac disease. I think we can feel confident at this point that she doesn't have celiac, at least at this time." He suggested leaving her on gluten for now and retesting levels in a year.

We're taking her off of gluten anyway, since we have two other celiacs in the house, and we're throwing in the towel on testing. A number of folks on a celiac fb page told me that their children received a dx with a whole lot fewer presenting factors, but I'm not sure I have it in me to keep feeding her gluten while we seek a second opinion.

So I guess my question is what your take is on this, and how important you think it is for a child to have an "official" diagnosis. I was convinced she had it, and now I feel a lot of doubt and uncertainty. Certainly, it'd be nice if she didn't - but I feel like I've gotten a lot of mixed messages. I feel like I need some "certainty" to move forward and stop doubting myself. I want to believe the doctor. I really do. She certainly doesn't want to give up gluten and would also like to believe the doctor...

[trents]

My take is your daughter has celiac disease and your doctor is full of bologna.

With those symptoms, high tTG-IGA and genetic risk factors I don't know how the doctor reached the conclusion she did. No need to torture her. And negative biopsies after positive antibody tests is certainly not unheard of. It can be due to a number of factors. Transient or not, no need to torture her. She has celiac symptoms now and if you keep shoving gluten in her there is more and more chance harm will be done to other body systems and more and more chance it will evolve into permanent celiac disease even if it is transient.

Edited January 22, 2022 by trents

[Scott Adams]

A formal diagnosis could be helpful to keep your daughter on a gluten-free diet for life, as some people may wander back to gluten later without this. However, it could also mean higher private health and/or life insurance costs going forward. 

I agree with @trents, high tTG-IGA levels mean she’s something like 97% likely to have it.

[drejo.mcwes]

Thank you both! I very much appreciate your input. I'm curious - would it change your opinion if her most recent EMA was negative, after being positive in November? We just got that result back today, and I felt like it threw me for another loop!

[trents]

No.

"The EMA-IgA test is an important marker for celiac disease, portraying a 99% accuracy rate. This test is expensive and involves a high degree of technical precision. It is used as an accompanying test along with the routine tTG-IgA test to confirm the diagnosis of celiac disease. This test implies that anyone with a high titer of EMA is sure to be a victim of celiac disease. However, the EMA test scores are much lower in sensitivity than the tTG-IgA test." From: https://factdr.com/diagnostics/blood-tests/ema-endomysial-antibodies/

[Scott Adams]

17 hours ago, drejo.mcwes said:

Thank you both! I very much appreciate your input. I'm curious - would it change your opinion if her most recent EMA was negative, after being positive in November? We just got that result back today, and I felt like it threw me for another loop!

It would not erase the prior results, which were positive. Was she eating gluten daily before this more recent test? She would need to eat about 2 slices of wheat bread for 6-8 weeks before taking a blood test for celiac disease. If she wasn't doing this before her recent test, it could explain why the results were lower.

[drejo.mcwes]

5 minutes ago, Scott Adams said:

It would not erase the prior results, which were positive. Was she eating gluten daily before this more recent test? She would need to eat about 2 slices of wheat bread for 6-8 weeks before taking a blood test for celiac disease. If she wasn't doing this before her recent test, it could explain why the results were lower.

She was eating gluten for 6 weeks before hand. It makes sense that the sensitivity rate is lower, like trents said, so the specificity is more telling than the sensitivity with regards to a negative test the second time. I think we're just going to let it be for now and consider a gluten challenge down the road in a few years, depending on what she actually wants as she gets older. The doc said there may be an opportunity  for her to participate in a research study in the next few years that looks at some blood markers after just a single dose of gluten, and he'll let us know more about that as things progress.

The other thing that I was thinking is just that she's relatively young still (1st grade) and things may only have just been developing when we happened to screen for it. 

[trents]

1 hour ago, drejo.mcwes said:

The other thing that I was thinking is just that she's relatively young still (1st grade) and things may only have just been developing when we happened to screen for it. 

Agree.

[beaver]

I have not been tested or diagnosed with celiac or any other conditions but have many food eating problems one of which led me to this website today.

Last year, I was thinking the worst that I might have celiac or something as I was suffering from bloating, stomach discomfort and diarrhoea after eating bread but noticed I wasn't quite as bad eating a bought organic loaf so tried making my own.

I now make my own part white, part wholemeal bread with organic flour and can now happily eat bread again, so it might be worth trying it with your daughter.

I have no real idea why, but wonder if it's a sensitivity to the multitude of insecticides, pesticides, fungicides etc, that crops get sprayed with so now eat organic if I can.

[trents]

2 hours ago, beaver said:

I have not been tested or diagnosed with celiac or any other conditions but have many food eating problems one of which led me to this website today.

Last year, I was thinking the worst that I might have celiac or something as I was suffering from bloating, stomach discomfort and diarrhoea after eating bread but noticed I wasn't quite as bad eating a bought organic loaf so tried making my own.

I now make my own part white, part wholemeal bread with organic flour and can now happily eat bread again, so it might be worth trying it with your daughter.

I have no real idea why, but wonder if it's a sensitivity to the multitude of insecticides, pesticides, fungicides etc, that crops get sprayed with so now eat organic if I can.

Beaver, what's keeping you from being tested for celiac disease? It is common for people with celiac disease to develop intolerances to other foods in addition to those containing wheat, barley and rye over time. It's due to the "leaky gut" caused by damage the small bowel villi which allows larger than normal protein fractions from the food we eat to enter the blood stream and get detected as invaders. If you have celiac disease it might unlock the puzzle for you. Or, you might have non celiac gluten sensitivity (NCGS).

[beaver]

Hi Trents,

Reading some of the posts here has got me wondering and rather than hijack this thread, I will post again when I have had a chance to think about it.

[trents]

18 minutes ago, beaver said:

Hi Trents,

Reading some of the posts here has got me wondering and rather than hijack this thread, I will post again when I have had a chance to think about it.

Sounds good. Thanks for your sensitivity about thread hijacking.

[drejo.mcwes]

6 hours ago, beaver said:

I now make my own part white, part wholemeal bread with organic flour and can now happily eat bread again, so it might be worth trying it with your daughter.

I have no real idea why, but wonder if it's a sensitivity to the multitude of insecticides, pesticides, fungicides etc, that crops get sprayed with so now eat organic if I can.

I appreciate the idea and we've had a moderate amount of success with this sort of thing for other issues (e.g., US flour caused swollen tonsils and sleep disturbances for one child, while bread we had in Europe didn't affect her at all). Because of this, before she was tested for celiac, we ate homemade sourdough made with organic grain that we ground ourselves. Unfortunately, it just didn't actually affect the GI issues.