My Biopsy Word For Word

[Jestgar]

I realize everyone is very passionate about their points, but please remember to stay nice (as you all have so far - just being proactive).

[justlisa]

Oh and Dave,

If you find my response to you "emotional", I would suggest you do a bit of self-reflection...it was anything but.

I am, simply, telling you two very important things:

1. This forum, while filled with a LOT of information and opinion, is NOT your neighborhood convenience store. No one-stop shopping will provide anyone with enough information to make informed, reasoned decisions.

2. YOU need to do more legwork... None of us, here, are mandated to "provide" YOU with evidence/support of our positions. You will, often, find such, but we are not required to do so. And, who would want that, anyway? Do your own homework.

[Jestgar]

2. YOU need to do more legwork... None of us, here, are mandated to "provide" YOU with evidence/support of our positions. You will, often, find such, but we are not required to do so. And, who would want that, anyway? Do your own homework.

Actually, we do ask people to provide the source of their information if it's other than opinion.

[justlisa]

Jestgar,

Is there anything, in this thread, to infer that Troy (or others) are presenting scientific fact or merely opinions based upon the totality of their own research/investigative efforts? If there was a statement such as: " I just read this study...etc, etc" or " a recent study...etc, etc" then it would seem reasonable to ASK for such source data... And, if or if not provided, then the readers are left to determine the relevance/legitimacy...correct?

Is it not safe to assume that the vast majority of the members here are laymen...postic in a non-medical, non-scientific forum? If so, in my mind, it behooves all of us to absorb what we "learn" here, but validate for ourselves.

It has been my brief experience, in here, that most members will do their utmost to help with "answers" or "sourcing"...to the best of their capabilities.

In fact, much of what is related, in here, is based upon opinion/personal experience. That is, imo, what makes this forum invaluable to many.

[Jestgar]

If what you present is opinion, then it's opinion. If you present something as fact, then we ask that you back it up. We don't expect people to present science papers, unless they are comfortable with that. All you have to tell us is where you got the information you are presenting, so anyone with an interest can go and research it for himself.

[Jestgar]

I will also add a tidbit of information here. In the case of celiacs with dermatitis herpetiformis; we test negative on the blood panel even more often than celiacs with the GI issues.

Just to use this as an example.

I know nothing about dh. If this were something I wanted to look up, I'd have no idea where to start. It would be nice if this statement came with a source, even if it were something like "we had an informal poll on the board and..."

Actually, it is a pretty interesting statement. Hopefully squirming will come back and post where she got the info from, I'd like to read more about it.

[troykm]

My specialist was the one who told me that around 25 percent of celiacs test negative in blood work.

To qualify her, not only is she a practicing gastroenterologist, she is also a professor and lectures here in melbourne at monash university on the subject, she is also a on staff gastroenterologist at several private hospitals.

Based on what she told me I have Googled and discovered what she has said has basis in current thinking.

So is that enough of a source for you? I would tend to believe my specialist who clearly is at the front of new information in gastroenterology over a 6 year old study.

[troykm]

If you can't find what I can find on google then maybe you're not asking the right questions.

[troykm]

Most of the current research on celiac disease is coming from europe and scandinavia. In fact I think you're find most of the current research come from countries outside of america because most other countries are actually interested in health and are not driven by pharmaceutical companies.

in France the research is so advanced they now think patient presenting with anxiety for the first time should automatically be screened for celiac.

Unfortunately I don't know what you want any of us to say. To what end to do you keep arguing with us? What is your ultimate goal in this thread? Or is your life so boring you just want to argue with people?

[troykm]

Just to use this as an example.

I know nothing about dh. If this were something I wanted to look up, I'd have no idea where to start. It would be nice if this statement came with a source, even if it were something like "we had an informal poll on the board and..."

Actually, it is a pretty interesting statement. Hopefully squirming will come back and post where she got the info from, I'd like to read more about it.

Google! Simply Google dermatitis herpetiformis negative celiac blood test and presto! 27000 results.

[justlisa]

Just to use this as an example.

I know nothing about dh. If this were something I wanted to look up, I'd have no idea where to start. It would be nice if this statement came with a source, even if it were something like "we had an informal poll on the board and..."

Actually, it is a pretty interesting statement. Hopefully squirming will come back and post where she got the info from, I'd like to read more about it.

Good example...

It would be nice, helpful to some even, to have links/source references for statements similar to this... And, from what I've seen, simply asking, "hey, squirming, can you, possibly, tell us where you came across this information?". Then the link/source provided (or not) and we can read and decide the validity for ourselves.

However...There seems, to me, a great difference in engaging in a cooperative discussion and appearing to denigrate someone's opinion. And, when one is using potentially flawed "fact" to argue their position and, in essence, demanding citation for the opposing view? Does not seem constructive to me.

Healthy debate can be constructive...and we all can learn from it...

Just my opinion.

[davemu]

Troy you will find my "ultimate goal" stated in one of my first posts, if you only cared to read it. I wanted to know where you got the value of 70% sensitivity for the ttg blood test. I also clearly stated it was of personal interest because I too had a negative ttg and wanted to know how reliable this result is. Unfortunately you became too pre-occupied giving me a hard time for questioning your sources that you never responded to my original question, until your most recent post.

[GottaSki]

I am interested in your information about the sensitivity of the TTG test, as I too have a positive family history with negative bloodwork. My understanding was that a false negative was rare and hence the hesitancy of most doctors proceeding with an endoscopy in the setting of negative bloodwork. It is true that if you are IgA deficient the negative TTG will be invalid, however in that case an IgG TTG test can be ordered which should come back positive (if IgA deficiency was the cause of the false result)

Getting back to answer what I believe your question was -- from what I understand:

In IgA deficient individuals, the tTG IgG can be more sensitive -- not necessarily true for non-IgA deficient individuals. I have read in interviews of Celiac Docs (I think Mayo or Univ of Maryland) online that quote for non-IgA deficient individuals the tTG IgG has the same 30% false negative rate as the tTG IgA (can't give you links because it was awhile back and I have visited thousands of sites since regarding hundreds of different searches, but I'm sure you could find them too -- try searching tTG IgG false negative). My current Celiac Doc has also told me the 30% false negative rate -- I am confident in quoting this number as she is on the Board of the American Gastroenterological Association, is a primary celiac research as well as clinical physician whom presents seminars to medical professionals with regard to Celiac Disease as well as serving as reviewer for NIH Grants - so I trust that she would not quote an invalid statistic.

If you have a family history of Celiac Disease along with symptoms I suggest having the following tests:

IgA Total

Endomysial IgA Antibodies

Gliadin Peptide IgA & IgG

tTG IgA & IgG

Iron

Ferritin

Copper

Zinc

Vitamins Bs, D, K

I base this suggestion on the complete list of tests that my Celiac Gastroenterologist at UCSD used for my initial diagnosis (he wanted my blood for two of his research projects so he followed my blood for the first year post dx) -- now I have these run annually.

May be of note...my tTG IgA was barely positive, the tTG IgG that was done on the day of my biopsies was a solid positive, but still quite low in the positive numbers. The numbers may have been low, but the damage to my small intestine was severe - no doubt long undiagnosed celiac. Oh also of note...all of my vitamin/mineral tests were extremely low at diagnosis indicating I was not absorbing nutrients.

As with any decision to do with your body...the choice is yours...run the blood, have the endo, trial gluten-free for at least three months to log any improvement. Doctors along with blood work can be wrong no matter what statistical information is out there.

Good Luck to you!

[davemu]

Thank you gottaski. Very useful info. Other than family history my ferritin is borderline for a male that eats exceptionally well (ferritin of 50 - what's a "normal" ferritin is another discussion. I think folate and liver enzymes were normal. I have issues with sleep, anxiety, chronic nasal congestion and recurrent chest colds. Im pale but not anemic - in more recent time i have developed pronounced dark circles under my eyes, which i suspect is tied to the congestion. Perhaps more meaningful I have a pretty sensitive stomach and have even once seen a GI specialist as a child for stomach pains. Even though they have improved I eat light lunches to avoid the heaviness that often follows heavy meals. While I try to stay lean and have a healthy bmi, to some degree i display a degree of "skinny fat" and am unable to put on weight when lifting weight and upping the calories. By skinny fat I mean skinny arms and a pot belly if I don't hold it in (months of hard training can offset this pretty well, but this is my "set point")

[troykm]

Troy you will find my "ultimate goal" stated in one of my first posts, if you only cared to read it. I wanted to know where you got the value of 70% sensitivity for the ttg blood test. I also clearly stated it was of personal interest because I too had a negative ttg and wanted to know how reliable this result is. Unfortunately you became too pre-occupied giving me a hard time for questioning your sources that you never responded to my original question, until your most recent post.

And I have stated over and and over and over and over that I'm passing on what my specialist said!!!! I have subsequently read it online with Google searches.

I'll say it again. My specialist said to me "if the antibody test is positive, then it's most likely positive. But if it's negative it's only 70% accurate so about 30% of negative results are FALSE"!!

That's my source!!!!!!!!!!!!! GOT IT NOW FOR FRIG SAKE!!!!

[davemu]

I dont have classical symptoms but I wonder if it warrants further investigations... The one thing I notice when trying gluten-free is that the reflux symptoms improve, my incredible thirst goes away, and my appetite normalizes without the frequent hunger pangs. It is frustrating to be thorough in investigating ones health without coming off sounding like a hypochondriac!

[troykm]

I dont have classical symptoms but I wonder if it warrants further investigations... The one thing I notice when trying gluten-free is that the reflux symptoms improve, my incredible thirst goes away, and my appetite normalizes without the frequent hunger pangs. It is frustrating to be thorough in investigating ones health without coming off sounding like a hypochondriac!

I dont know what country your in but if were you I would have the antibody test again. Use a different lab. Have the biopsy and the genetic tests as well. You need an answer none of us on here can give you.

In Australia the antibody test is not used to diagnose celiac, it's seen as just one piece in the celiac diagnostic puzzle. Melbourne pathology did my antibody test and even on the negative results they state that the results are not diagnostic of and a biopsy is necessary. Now would they be saying that f they believed negative really meant negative?

[squirmingitch]

Just to use this as an example.

I know nothing about dh. If this were something I wanted to look up, I'd have no idea where to start. It would be nice if this statement came with a source, even if it were something like "we had an informal poll on the board and..."

Actually, it is a pretty interesting statement. Hopefully squirming will come back and post where she got the info from, I'd like to read more about it.

And I will be happy to comply WHEN I get well. Yesterday my shoulder/arm went whacky &it's so painful!!!!!!!!!!!!!!!!!! Had to sllep with ice pack on. Can't move arm or I scream. I have hundreds of bookmarks on dh & hundreds on celiac & the info. is bookmarked but I didn't organize them --- my bad. It will take a lot of searching & I'm not up to use of the arm that long until it stops hurting. Sorry typos --- arm -- can't type well.

[Jestgar]

And I will be happy to comply WHEN I get well. Yesterday my shoulder/arm went whacky &it's so painful!!!!!!!!!!!!!!!!!! Had to sllep with ice pack on. Can't move arm or I scream. I have hundreds of bookmarks on dh & hundreds on celiac & the info. is bookmarked but I didn't organize them --- my bad. It will take a lot of searching & I'm not up to use of the arm that long until it stops hurting. Sorry typos --- arm -- can't type well.

Bummer. :( Sorry! Hope it heals up quickly.

[GottaSki]

And I will be happy to comply WHEN I get well. Yesterday my shoulder/arm went whacky &it's so painful!!!!!!!!!!!!!!!!!!

Wishing your pain away - hoping it feels better quick!

[Bubba's Mom]

I dont have classical symptoms but I wonder if it warrants further investigations... The one thing I notice when trying gluten-free is that the reflux symptoms improve, my incredible thirst goes away, and my appetite normalizes without the frequent hunger pangs. It is frustrating to be thorough in investigating ones health without coming off sounding like a hypochondriac!

I am one of the people that has a negative blood test for Celiac, but my symptoms were so bad, a scope was ordered at the same time as the blood work. My endoscope showed complete villious atrophy, along with some ulceration in the duodenum. I was DXed based on the biopsies, but it was obvious with the naked eye. The Dr. gave me photos and they look just like what I can find online as pics of villi flattening.

If you have gotten a negative blood test, but your symptoms point to the possibilty of Celiac, you can push for a scope (you must be consuming gluten daily for a good test result) or you can go on the gluten-free diet on your own to see how you feel.

IMHO it might be a good idea to push for the endoscope? It could also look for H.Pilori and any other gastro problems.

They can do genetic tests, but there again, there are some that say you need to have DQ2 and/or DQ8 or it's not Celiac, but other studies are saying there are other genes that are Celiac too. If you have the common genes, it doesn't prove you have Celiac, just that you have the genetic ability to manifest the disease.

To sum it up..there's no testing at this time that is 100% accurate. If you are one who falls into the false negative blood work category, or questionable genes, it's really frustrating. They'll tell you "you may or may not have Celiac disease." Or that you have atypical Celiac disease, or non-Celiac gluten intolerance.

It really seems to all come down to the same answer if you are having symptoms. Go gluten-free and see what happens.

[justlisa]

I actually merely corrected some misunderstanding on your end. It seems you didn't handle that too well.

I never questioned the diagnosis, I only asked for the source of your information (to which you gave me a smart ass reply about using google and then gave me a misguided lesson on blood tests). The purpose of this board is to educate each other, is it not? By posting a scientific question I assumed you wanted somewhat scientific answers. My only goal is to keep an objective yet open mind. That's why I asked for your source of information - for my learning too. I'm not intentionally playing devils advocate to upset you.

I am not here to make you doubt anything. As I said your family history along with biopsy results make a convincing case for celiac disease. If I was in your shoes I would absolutely stick to the diet. It is hard at first but I've tried it for some months and it does get significantly easier (especially if your symptoms respond).

Davemu,

You've tried gluten free for "some months"?

I'm confused... Your profile indicates you've been a member since'04...and, per your posts in'04, you were getting tested back then... Did you test negative in'04? And, as a result, decide to not go gluten free? Are you having symptoms now (as you state you're, now, considering endoscopy).

When did you try a gluten free diet... any improvement?

I'm interested in what's happened with you over this amount of time...

[squirmingitch]

And I will be happy to comply WHEN I get well. Yesterday my shoulder/arm went whacky &it's so painful!!!!!!!!!!!!!!!!!! Had to sllep with ice pack on. Can't move arm or I scream. I have hundreds of bookmarks on dh & hundreds on celiac & the info. is bookmarked but I didn't organize them --- my bad. It will take a lot of searching & I'm not up to use of the arm that long until it stops hurting. Sorry typos --- arm -- can't type well.

Thank you justlisa & jestgar for the well wishes! I'm better now & as I promised I am posting sources & info. for my statements. I might have gotten a little carried away as I find all of it fascinating. You can certainly learn about dh though! I have posted though on the dh forum as It would not be fair to Troy to hijack his thread & I have no wish to do so. here is the link:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/