Negative Blood Tests, Positive Biopsy --what Does This Mean?

[poet925]

Hi all. I"m relatively new here. I don't have a celiac dx yet but I was scoped while in the hospital a couple years ago for severe abdominal pain (turned out to be an ovarian cyst). The biposy showed intestinal damage consistent with gluten-sentivity enteropathy (or some similar word that when I looked it up seemed to be an old-fashioned term for celiac). I started a gluten free diet and followed up with GI who ordered blood tests and told me that since my blood tests came back negative, I do not have celiac. Hello?! That's like the opposite of everything I read then which said the biopsy was the gold standard for diagnosing celiac. I've decided I want this checked into again and have found a specialty clinic in the area that I think I'll go to. I'm curious though. Does what the previous GI said to me sound right to you all or does it sound like he really didn't know much about celiac? Thanks so much for any replies.

[Fiddle-Faddle]

Your GI sounds like an idiot.

If you had blood work done after starting gluten free diet, of course your results will be negative!

Take your biopsy results with you to the specialty clinic--there should be absolutely NO need for a repeat. Once you have celiac, you always have celiac. You can't turn it off.

Welcome to gluten-free land! It's SO much better than most of us ever though it could be--both in terms of tasty food we can eat (LOTS of great substitutes available, unlike, say, 5 years ago) and in terms of how much better we feel off gluten. LOTS of support available here!

[Osprey101]

Your GI sounds like an idiot.

Amen to that!

After enough time without wg in your diet, your labs will show a reduced antibody response. One lab says they'll still show up even after 1-2 weeks of dietary exclusion, but why guess? If the biopsy shows the villi were damaged, that's a good reason to believe a celiac diet is good for you.

Really the "gold standard" test is dietary exclusion. If you cut out the wg and you get better- followed by a challenge in which re-introduction of wg in which symptoms reappear- that's a very, very good sign that wg is something that doesn't agree with you, and does not belong in your diet.

Good luck!

[poet925]

I had only been gluten free for about 2 weeks if that when the bloodwork was done. I'm going to a support groupmeeting/mini-conference next Saturday with an MD in attendance (actually a colleague in the same group as the prior guy as it turns out), so I guess I will see what I can find out there too. I have to say I'm quite worried about starting the diet. Our budget is so stretched thin and with dh facing a possible lay-off in a week, I can't afford specialty items. Last time I only did the diet briefly and I'd been so sick with the cyst and also with the meds they'd given me for constipation that it hurt to eat. So I wasn't that hungry and basically did things like, cook a large pot of mashed potatoes and subsist on that and meat for a few days, then cook another pot, lol.

There really is no need to repeat the biopsy? I was thinking I should not start the gluten-free diet until I see the new specialist but now I'm thinking, do I really need to wait? Maybe I will ask them when I schedule an appt. The diet has seemed to read about it like a big deal managing to find the hidden gluten in everything that it's been a daunting task to think about to say the least- esp. since I already follow a no dairy products diet due to an allergy. I've never been strict about that though, if something has a tiny bit of milk in it, I do eat it but maybe now is the time to tighten that up too? (And no it's not lactose intolerance, it's an allergic reaction to casein, the protein in the milk.) Thanks for your suggestions and for letting me vent.

[Guest j_mommy]

Yup I would say Celiac!!!!!

Just remember if you choose to have another biopsy done you need to be eating gluten for the test results to be "true", same with blood tests!

good Luck!

[Nancym]

You don't need to buy specialty items. Meat, veggies, fruit, nuts, etc are all gluten free.

[gfpaperdoll]

yes, defintely celiac, even with a positive biopsy. Not to mention your casein problem which is a big tip off, most people that have a dairy problem also have a gluten problem. & yes you should not cheat on dairy even a tiny bit - dairy is very damaging to your body...