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tom

Member Since 20 Jun 2004
Offline Last Active Feb 13 2014 09:50 AM
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#849509 Blood Test Received -- Endoscopy Or Not?

Posted by tom on 21 January 2013 - 12:31 AM

Haven't seen anyone mention that it can be good, just in general, to let a specialist take a look under the hood, so to speak, since we already know things haven't been well.
I feel better knowing I've got a baseline eval available for future comparison.
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#842604 Confusion About Gluten Intolerance

Posted by tom on 12 December 2012 - 12:23 PM

...
Don't know how normal this experience is?? I feel like this gluten challenge should be more unpleasant.

I think it's safe to say it'd be more unpleasant if you were re-introducing gluten after feeling increasingly healthier during weeks or months 100% gluten-free. (Slight assumption in there on it being celiac)

You did say you never really went gluten-free, right? That'd be why it's not particularly unpleasant.
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#839847 Blood Tests Positive..do I Really Need A Biopsy?

Posted by tom on 29 November 2012 - 07:33 AM

Oops I was too slow to get this in before your new post . ..

Hi all, I had two blood tests which both tested positive for the antibodies (don't koiw results or the tests they did). I went gluten free for 4 weeks and felt like a different person but then my dietician told me I had to eat gluten again for the biopsy.
...

I'm not sure I understand the situation. A dietician is involved w/ an endoscopy/biopsy?

You already have a positive dx.
An endoscopy/biopsy isn't diagnostic at this point, as that ship has sailed, but it's still certainly valuable to have a GI have a look.

I think the dietician is confused & that if the Dr *doing* the biopsy thought you needed to continue the challenge you would've been instructed so by the Dr.

With pos bloods & response to diet, if the biopsy finds nothing, the story would be either "phew, stopped gluten before damage" or, more likely, "dang, missed grabbing a damaged piece because it's spotty damage that isn't seen w/ naked eye".

The endoscopy is still worthwhile, but you're already dx'd celiac.
If I were you I'd stop the gluten immed & if I saw the dietician again I'd ask if they knew I already had positive bloods.

Damaged tissue doesn't heal overnight, and every time someone asks "it's been a month, why aren't I all better by now?", they're told "be patient, it takes time for the damage to heal".

Be gluten-free & get well! Good luck VeggieGal :)
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#839468 I've Been Gluten Free For So Long, Yet I Still Get The Worst Stomach Aches

Posted by tom on 28 November 2012 - 12:13 AM

It makes me think 'additional intolerance' too. For me, soy was doing that & I first had the notion through keeping a food/symptom diary.
The thing that *really* surprised me was that it turned out that the previous 3 or5 day soy-free trials just weren't long enough. It took ~2 wks soy-free before I really knew how great I could feel.

So many products w/ long ingred lists have some soy, ugh.
Enough about soy - if you have other intolerances, it could be anything. I'd say definitely start a food/symptom diary & remember that the reactions may not even be same day.
Good luck!


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#835770 Gluten-Free 4 Yrs, Contradictory Test Results

Posted by tom on 11 November 2012 - 04:16 AM

Also, it's a little goofy for him to be turning to the murky world of celiac genetics when you have villous atrophy AND a positive response to gluten-free.
Imho, every good GI would dx you on these, unless they have some other explanation for the villous atrophy.

Just shaking my head at that Dr's failed attempt at the blood test & warped view of the gluten-free diet.
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#835641 Hearing Loss And Celiac

Posted by tom on 10 November 2012 - 01:28 PM

... When she went gluten free she confounded the ear doctors.
...

I may never stop being amazed at how often situations of this nature occur. Some Drs even seem to flat out refuse to believe that the gluten-free correlation really is causation.

As long as those particular confounded ear Drs ended up accepting that gluten was the issue, it's hard to really blame them - being products of a system of specialized education. Sheesh even some who DID specialize in GI aren't up-to-speed w/ the totality of what body parts/areas/systems can be affected by celiac.
I don't think any of the body's systems get off scot-free for all celiacs, do they? :unsure:
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#835360 Is This Diagnosis Accurate

Posted by tom on 08 November 2012 - 05:35 PM

...
The Dr. said that if the genetic markers come back negative, I will never get celiac. Fine, I'm not predisposed to it. Here's where I have qestions. She also said that if its negative, and I do have a gluten sensitivity/intolerance that eating gluten will do no long term damage.
...

I'm with you on this one Leeloff - there's no way for her to really know this.
And also, the Dr's genetic comment is wrong. US just using 2 genes, while I've seen talk of 8 or 9 found to be involved so far, and have seen ppl here say that in Europe they already use more than the 2 we look for.
We have a few members here neg on the 2 genes but pos through testing .. .I think .. .details fuzzy right now ....

Anyway, I'd call it short-sighted & premature to definitively claim ANYTHING about long-term effects of gluten on NCGI folks.
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#835037 Newly Self-Diagnosed - Get Tested! My Story...

Posted by tom on 07 November 2012 - 12:40 PM

... However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES!


Glad you posted this, Bill. I've barely been able to believe how vehemently some claim the opposite around here, as if a biopsy can't possibly be positive w/out constant gluten up to the day of the procedure.

We just had another newer member w/ a positive biopsy after SEVEN months gluten-free. (Of course it's not a recommended testing strategy - I need to say that before someone claims "tom thinks 7mos gluten-free never changes test results" or some such nonsense.)

Anyway, I've long thought the bigger factor in biopsies is the patchy nature of damage combined w/ GIs taking too few samples or from too few locations.
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#834867 The Funny Pages - Tickle Me Elbow - The Original

Posted by tom on 06 November 2012 - 04:46 PM

Vote . . check.
No line! I'd allotted energy for a line! So I popped over to a nearby guitar store to check out some hollow-bodied electrics. Want want want. "With prices like THESE, it's a mistake to NOT buy!"

While some political scientists may have their own arguments to abolish the electoral college, I had to laugh at a headline lets_kill_the_electoral_college_so_we_never_have_to_pay_attention_to_ohio_and_florida_again/
It does sound nice, in that respect.
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#830180 Tell Me A Gastroscopy And Colonoscopy Are Not That Big Of A Deal!

Posted by tom on 15 October 2012 - 09:51 PM

Guess I've got to agree that googling it was a bad idea, because mine was a breeze & I've seen many many others here say either the same or that their throat was a little sore.

It's a pretty common procedure . ...well both procedures I guess, whether together or separate.

I'll flat out say I think those rare horror stories are even VERY very rare.

Afterwards you'll be saying "I got worked up over THAT?".

You're gonna get better once it's figured out. :)
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#829806 How Much Gluten, For How Long, Must You Eat Before Testing?

Posted by tom on 14 October 2012 - 02:39 PM

THANK YOU IH for that MOST informative information & the link to the article!!!!!!!! This should clear up a lot of confusion on the subject.

The article's header is:
This article appeared in the Autumn 2005 edition of Celiac.coms Scott-Free Newsletter.

So, no, 7yo info shouldn't be expected to clear this up.

Did the best current celiac blood tests even exist in 2005?

We really need to use current info.
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#829627 How Much Gluten, For How Long, Must You Eat Before Testing?

Posted by tom on 13 October 2012 - 06:31 PM

No, I am sure the "usual posters" are just afraid to post anymore about this topic, having been shouted down and argued with repeatedly.
...

Oh please ....
I'm not the one bolding or using allcaps in these misguided disagreements.
If someone believes 3 months challenge is "needed to have any hope of a positive dx" (despite that being imo irrelevant in this thread, given an already-positive blood test) disregarding all the contrary evidence that it *is* possible to get DX'd on less than 3 months, there are many non-controversial ways to say so.

This thread isn't really about the same topic as those where someone is trying to launch testing after having been gluten-free.


...conversely, you need to be gluten heavy for about 3 months for the best diagnostic outcome on a biopsy (according to the leading celiac centers).

Someone will disagree with this, I am sure.

Someone, as in all but one leading celiac center, is how it's been presented here by others.

And the dispute is the word "need" again.

Last study I saw had no diagnostic difference w/ lower gluten. (The key info is that once over the threshold, how high doesn't matter.)
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#828830 Gluten Challenge Before Endoscopy

Posted by tom on 10 October 2012 - 02:11 PM

...
In your rush to pick a fight with me (as always) you may have missed that part.
...

? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".
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#820747 Celiac: The Trendy Disease For Rich White People - Science 2.0

Posted by tom on 31 August 2012 - 02:07 PM

http://www.science20.com/science_20/celiac_trendy_disease_rich_white_people-93422">

<font size="-1">Unfortunately, some people really do have <b>Celiac</b> disease, an actual immune disorder - gluten is like poison to them, not an 'I feel better if I don't eat a bagel' issue. Those sufferers are not the laughable 1% suddenly claiming they have <b>Celiac</b>
href="http://news.google.c...ys1e34jvYw&url=
...
View the full article

Don't most of us agree that this article deserves no mention here at all?
Did it sneak in by pretending to be scientific via its hosting on a blog called Science2.0?
I'm thinking these 'Publications' posts are auto-generated, so its initial posting is a price paid for the convenience. But if something as ridiculous as this makes it through again, wouldn't we be better off if a mod or Scott edited out links to such articles? Nothing to learn there & no point in giving traffic to a nonsense site/article.
Or maybe it's just too late to delete it once ppl are commenting on it, I don't know. I see nearly all of the posts in the Publications section & now I'm ready to commend the many many posts w/OUT bs nonsense useless articles.
Surprised more haven't snuck through whatever path "Science"2.0 took.
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#819590 Five Guys And Fries

Posted by tom on 24 August 2012 - 04:33 PM

...
What you have done here is pushed me to not be an involved party here.
...

I hope you'll reconsider. Gluten can have some weird effects.
In a couple days, if you re-read what was written, I think you'd see it in a different light.
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