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Villous Atrophy

Helena

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Helena Contributor
Helena
Posted

Some of this is repetitive from another post . . . but I have a new question . . .

My biopsy has been cancelled . . . GI doctor says since there is a slight risk in my case (allergens in the drugs . . . I don't want to do it without drugs) it isn't necessary. He asked me what I would do if the test was negative and I would go gluten free regardless so he suggested we cancel the whole thing . . . but he is referring me to a dietician and will see me in a few months to see how I'm doing on the diet.

I agreed to cancel the test but am now having second thoughts.

I *don't* want to go on gluten again . . . but I *do* want to know how my villi are doing.

So my question is: would someone like me (I'm 30) who has probably had celiac all her life but has been on a wheat free diet for 3-4 years and on a nearly gluten free diet for a few years be likely to have nearly normal villi? Or is it likely that I would have some villous atrophy still? (I did have a positive tTG test)

I have mild GI symptoms with gluten + tiredness. Plus I have *major* dental enamel defects (which my dentist has always figured has been from antibiotic use) and I've always been thin and have to snack frequently.

I'm getting some nutritional blood tests . . . if I don't have any nutritional deficiencies does that mean my villi are probably okay by now?

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Guhlia Rising Star
Guhlia
Posted

Enterolab's stool test can tell you whether or not you're absorbing nutrients (I think). Check into that. It may be a much safer alternative. While it won't tell you if you have villous atrophy, it will report if there are any problems.

gfp Enthusiast
gfp
Posted

Firstly I doubt a nearly gluten free diet will affect your biopsy.... you only need 1 crumb thiough it may make it harder to find a good sample.

Secondly why not just get a full celiac panel?

Finally if you want to know how your villi are doing then you can have a biopsy without drugs, I for one wouldn't take the amnesiac cocktail they give and my biopsy was drug free excepting lidocaine local spray on my throat and this was 10 yrs ago with an old style endoscope which was at least 2x the thickness of the modern ones.

Helena Contributor
Helena
Posted
  • Author

Thanks for the suggestions . . . enterolab is out at the moment. . . I can't afford it. I'm getting some tests for nutritional deficiencies though.

I did find out on my last visit to the GI that he *did* run the full celiac panel (I should change my signature). . . EMA was negative. I asked him whether it would be worth our while to repeat the blood test since he put me back on barley for awhile and he did . . . so before I do anything, I'll wait until I get those results back.

My doctor initially suggested that we do the GI procedure without the drugs . . . but I have serious gagging issues and some problems with swallowing (those old style Tylenol pills really hurt on the way down. I need to eat meat with water by my side because it sticks in my throat.) But perhaps I'd be okay if I had some topical anaesthetic applied . . .

gfp Enthusiast
gfp
Posted
Thanks for the suggestions . . . enterolab is out at the moment. . . I can't afford it. I'm getting some tests for nutritional deficiencies though.

I did find out on my last visit to the GI that he *did* run the full celiac panel (I should change my signature). . . EMA was negative. I asked him whether it would be worth our while to repeat the blood test since he put me back on barley for awhile and he did . . . so before I do anything, I'll wait until I get those results back.

My doctor initially suggested that we do the GI procedure without the drugs . . . but I have serious gagging issues and some problems with swallowing (those old style Tylenol pills really hurt on the way down. I need to eat meat with water by my side because it sticks in my throat.) But perhaps I'd be okay if I had some topical anaesthetic applied . . .

I won't pretend its pleasant...it's not BUT I personally (as someone with severe gagging, I haven't seen a dentist in 10 yrs) would prefer not to have the ketamine cocktail at all.

Its still unpleasant, you just don't remember it... (immediately..I'm waiting for peoples artificially repressed memories to start coming out in 5-10 yrs....)

Nancym Enthusiast
Nancym
Posted

Your doctor put you on Barley when you're a diagnosed celiac? What on earth for?

Ursa Major Collaborator
Ursa Major
Posted
Your doctor put you on Barley when you're a diagnosed celiac? What on earth for?

That's what I was thinking. Anyway, your doctor can't put you on anything. If you refuse to do it, what can he do?

I hope you're completely gluten-free now!

Getting nutrient levels checked is a good idea, really, seeing how you absorb them will also tell you how your bowels are doing.

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Helena Contributor
Helena
Posted
  • Author

Well, my doctor was originally going to do the biopsy because the blood tests were inconclusive (i.e. tTG positive--"barely positive" he said in my last appt.; antigliadins and EMA negative). But he expected them all to be negative on account of my nearly gluten free diet.

So I went back on barley for the purposes of being diagnosed; but I raised a number of issues with the test (innacuracy . . . especially given the fact that barley is a low gluten grain; potential allergy issues with the meds.) At that point he asked me what I would do if the biopsy is negative . . . I said I would go gluten free anyways. So he said he was fine with a degree of uncertainty and since I wouldn't be doing anything different he would prefer not to take any risks. He will continue to follow my progress and referred me to a dietician. (He didn't, however, order any nutritional tests . . . I didn't ask him though because another doctor did that for me already :) I like that particular doctor! The only thing he didn't order is a bone scan and a test for vitamin D which I'll look into in the near future.

Yep, I'm going gluten free . . . or am attempting to. (Haven't thrown out wooden cutting boards, etc. yet, but will soon . . . haven't looked into my cosmetic products. Am not sure about my spices. But other than that, I'm doing everything right, I think.)

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