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!
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")
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 someone has yet to post one single piece of literature that speaks to this "extraordinary, mounting evidence". I don't know why my asking is just falling on deaf ears. I'm not vehemently arguing anything, if you cared to read my previous posts you would know that I just want to know where you guys are getting your numbers from. It seems like the source is as much a mystery to you as it is to me because nobody has mentioned any source but hearsay. If you use that as your evidence then there is no point to continue this coversation.
I should add that I didn't exclusively choose those articles (they were the first hits), but I don't know of anything newer that suggests these numbers are off. Again, instead of getting emotionally worked up that I dare question any of you, stop dodging my simple request and provide an actual resource (anything) to suggest our understanding of celiac bloodwork had evolved in the last years.
Systematic review: the use of serology to exclude or diagnose coeliac disease (a comparison of the endomysial and tissue transglutaminase antibody tests).
Lewis NR, Scott BB.
Meta-analysis: deamidated gliadin peptide antibody and tissue transglutaminase antibody compared as screening tests for coeliac disease.
Lewis NR, Scott BB.
Aliment Pharmacol Ther. 2010 Jan;31(1):73-81.
Old and new serological tests for celiac disease screening.
Volta U, Fabbri A, Parisi C, Piscaglia M, Caio G, Tovoli F, Fiorini E.
Expert Rev Gastroenterol Hepatol. 2010 Feb;4(1):31-5.
I will concede that the reported sensitivity is closer to 93%, not 95-99 as some other studies. But it's a far cry from 70%.
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).
With that line of reasoning we would be doing joint fluid sampling for diagnosing rheumatoid arthritis or performing heart biopsies to diagnose heart attacks. Enzymes and antibodies are present in the bloodstream. Let's agree to disagree because you have a high almighty attitude about when it comes to your understanding of things.
Yeah I definitely agree with your points of view. I'm going to get it investigated further.
As for the sensitivity thing, it seems you have it backwards. A high sensitivity means that you are going to catch most people with the disease. 99% sensivity means that you are only going to miss 1% of the diagnoses (in the form of a false negative). In other words a sensitive test is good at ruling out the condition tested for. A high sensitivity does not mean its a good test, however, if it lacks in specificity. A test high in specificity means that a positive test is accurate (good at ruling in the disease, ie: very few false positives). If a test is high in sensitivity but lacks specificity it's like taking an enormous net to catch everything. Sure you get what you are fishing for, alongside other things you don't want to catch. On the other hand if the test is very specific, it means you only catch what you want to catch (though if this is coupled with poor sensitivity you are going to miss a lot of what you are trying to catch). So if you are fishing for salmon with a big net (high sensitivity) you will catch all your salmon +\- other fish (not miss a diagnosis, if you will). If your net is specific you will only catch salmon (not make a false diagnosis). Every test has a combination of the two qualities.
Confusing I know but I hope this helps.
See I'm just wondering about a credible source. The most up to date medical literature indicates high sensitivity of ttg. This means that false negatives occur 1-5% of the time. This means that a negative result is accurate 95-99% of the time. There are many ways to slice it. The test is supposed to be highly sensitive and highly specific meaning that either a negative or a positive result are both highly accurate. I'm not disagreeing with others here but I would like a source more reliable than hearsay that suggests the ttg is unreliable. First hand from a GI i was told that only a couple people in his career with a negative result ended up with a positive biopsy.
No reason for you to get snarky. Any reputable source I came across suggests the ttg has 95-99% sensitivity. The fact that antibodies predominate in the gut is irrelevant - If the test works, it works. If you have other information I am interested to find out where it's from, that's all. This is also for personal reasons as I am wondering whether I should push for a scope myself.
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)
I'm simply being objective here. The TTG should have a sensitivity of 95-99%, meaning there should only be a false negative of 1-5% of celiacs. This is why it's used as a screening test. If it was only 70% sensitive then it would make a horrible screening test. This stat may change with our evolving understanding of the disease.
The only reason it's important to be so confident with a diagnosis is the radical lifestyle changes that are involved. Sure, the gluten-free diet is arguably healthier than a gluten containing diet (when done right), however it's important to realize that true celiac disease requires exceptional attention to detail when it comes to ingredients in food and strict avoidance of even minute amounts gluten.
I'm just being objective in saying that it is unscientific to diagnose a condition based on "1/3 genetic screening, 1/3 TTG result etc". This is not a matter of personal opinion.
What ultimately matters is that if you have symptomatic improvement on the gluten-free diet and a high suspicion for celiac disease based on the biopsy results and family history, then stick to the diet.
This is good to know. Thank you. I am going by current medical literature, which as we know is ever changing.
I do question the validity of diagnosing celiac based on 2/3 positive tests. That's an exceptionally unscientific way of making a diagnosis. I would be more inclined to look at your pre-test probability (the fact that immediate family history is positive and the fact that you have some symptoms to suggest celiac). In other words your chance before taking the test was pretty high already so that the biopsy results, even though inconclusive, allow a doctor to comfortably make a diagnosis. If your pre-test probability was very low (no symptoms and no family history) I would be less comfortable making a diagnosis with a negative bloodwork and inconclusive biopsy.
I also wonder about the sensitivity of the TTG blood test. Current knowledge indicates that 99% of celiacs will have positive tests, meaning a false negative is unlikely. Can anybody speak to their ecpxperience with this?
The issue here is that they did a biopsy with a negative TTG. Usually one stops at a negative blood test unless one has convincing symptoms of celiac and/or a strong family history. This is why your doc is a bit unsure of how to interpret these results. That being said, in a otherwise healthy person with no recent gastrointestinal infection the pathology report is in keeping with celiac, though not conclusive. Did you have any soft markers of celiac on your bloodwork (anemia, low ferritin or folate, abnormal liver enzymes)? The real challenge here is that there is no way for you to use bloodwork as a measure of compliance to a gluten free diet (a negative test in a seropositive celiac on a gluten free diet will be negative after a few months)... There is an option of repeat biopsy after being gluten free but even then they might just inadvertently pick a healthy patch of bowel and you will erroneously conclude you have celiac. I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.