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Blood Type Yes; Biospy No; 12 Monthes Later Symptoms Seem Bit Worse

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None Newbie
None
Posted

Blood type yes; biospy no; 12 monthes later symptoms seem bit worse.

I'm not a hypochondriac; but I've gained 10 lbs which i never do (same, healthy weight more or less since 15); my stomach bloats out recently and i have bad gas and sometimes this overall bad odor to me (my BF doesn't notice it or hasn't said anything).

So I went relatively gluten free for two weeks, not nearly as strict as some people who post on this board. Felt better, belly was flatter, no smell etc. But when they did the biopsy a year ago I just wasn't celiac. I'm diabetic type one and keep good control of things. Honestly-- if u tested Neg. a year ago, with the biospy, by a a well established NYC doctor, could I contract celiac a yr later? I know my blood will always test positive, but I don't have the time to take biospies every yr. or anything? Need straightforwad, honest advice.

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Guest nini
Guest nini
Posted

If your blood test was positive, you have it... plain and simple. Dr's are still reluctant to dx based on blood work alone, but I'm sorry to say that the biopsy is NOT as accurate as the medical community would lead you to believe. It is too easy to miss damaged areas as they can be sporadic, especially if they did not take enough samples. Also, they could have seen early signs of damage, yet refused to dx because currently the majority of the medical community is stuck on the outdated methodology of waiting until the the villi are completely gone before being willing to dx celiac.

My advice to you would be to forget having any more biopsies, they are useless IN MY PERSONAL OPINION, and go ahead and try the diet. How you respond to the diet is way more valid a diagnostic tool than the biopsy.

nikki-uk Enthusiast
nikki-uk
Posted
If your blood test was positive, you have it... plain and simple. Dr's are still reluctant to dx based on blood work alone, but I'm sorry to say that the biopsy is NOT as accurate as the medical community would lead you to believe. It is too easy to miss damaged areas as they can be sporadic, especially if they did not take enough samples. Also, they could have seen early signs of damage, yet refused to dx because currently the majority of the medical community is stuck on the outdated methodology of waiting until the the villi are completely gone before being willing to dx celiac.

Nini just about said it in her comment above.

A once in a lifetime test is not enough to detect celiac disease.It's possible that at the time of your biopsy you was in the early stages of the disease -the damage can also be patchy so it could easily be missed by a biopsy.

If you feel better G.F and don't feel the need for a 'formal' diagnosis then continuing being G.F would be your best option :)

nettiebeads Apprentice
nettiebeads
Posted

Nini and Nikki are right. More up to date drs now don't think of the biopsy as the gold standard for celiac. It takes 10 or more samples (I forget what the current recommendation is exactly) plus a WELL TRAINED lab to read it accurately. Believe it or not, some drs are re-thinking tests and now think that the diet challenge is the best dx, which is how I was dx'd almost a decade ago, before the blood tests and biopsies became the standard. If your body feels better w/o gluten, then don't eat gluten. You'll be saving yourself from lots of misery years from now--read the posts of those who weren't dx in a timely manner - ataxia, neurapathies (I suffered from that one - different story), thyroid problems.... Get the pic?

Take care and keep us posted!

Annette

jerseyangel Proficient
jerseyangel
Posted

I agree with everyone above! I would use your energy to go 100% gluten-free. Come here anytime you have questions about how to de-glutenize your life! :)

aikiducky Apprentice
aikiducky
Posted

Just a thought but could the original poster mean they had a blood test GENE test? That one would always be positive for a celiac gene even if you hadn't developed celiac.

To the original poster: celiac doesn't happen overnight. It developes. :) So yes, it could be that first you have an inconclusive biopsy where nothing much is to be seen, and a few years later, you do show celiac damage in a biopsy. So you could think of having another one. But some people never show much damage in their intestines, and still feel much better on a gluten free diet, so you should keep that in mind as well.

There's also the option of getting (stool) tested by Enterolab, I don't have a lot of info on that though but hopefully someone else will chime in...

Pauliina

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