troykm

Here in Australia most specialists and GP's don't put much faith in the blood tests as i have been told by all of them (the ones i see or have seen) that they are all too inaccurate for a diagnosis. I have also read with regards to the biopsy, in Australia they now view no villi damage BUT hight lymphocyte levels as early celiac disease. The basis being while there are some other things that cause villi blunting, none of them cause BOTH villi blunting and high lymphocyte levels other than celiac. 

 

Just in my family there are 4 biopsy diagnosed celiacs with positive gene tests. Only one of us had a + blood test. My current GP said she wont even bother with the blood tests anymore she just refers straight to the GI specialist for biopsy. Her method is "if you are going to rule something out, you have to rule it out, not guess it out. The blood tests are guessing" in her opinion

I may or may not be alone in this, but I'm kind of curious to know how it goes when you bring it up.

 

There are quite a few reaosns people "food-push;" some are cultural, some are nurturing, but sometimes also much less benign.  In the latter case, people with their own food issues will try to drag others down so they're "not the only one."  Sort of the way heavy drinkers feel especially uncomfortable around teetotallers even if the teetotallers aren't making an issue of it- the heavy drinkers feel like their alcohol use is spotlighted/feel judged/etc., and may push everyone around them to drink so they don't feel "like an alcoholic" (or some variant of that sentiment) by contrast.  (And yes, I've seen this happen- with food, and with booze.)

I have this issue at work. Over the last 2 years i have lost a lot of weight. (not celiac related, i chose to loose it)

 

Because people at work only ever saw me fat, they dont realise that normal weight for me is quite thin, but because they are all overweight i now get waves of "oh your too thin" "you look ill" "are you sick?" And i want to punch them all out LOL

My mom has a good analogy for people who just don't get it and say "a little bit won't hurt you though." she says, "it's just like if someone has a peanut allergy, it doesn't matter if they have one peanut or a handful, it still does the same damage and they would have a bad reaction. Celiac is the same, just a little bit is just as bad as eating a whole
Bowl of pasta." now, yes we know celiac isn't an allergy but it still gets the point across as most people can understand the peanut thing.

 

 

I use the peanut allergy thing now too. I tell people take celiac as seriously as you would a peanut allergy. I know that its not quite the same but at least they "get it" after that. 

Thanks guys. I've had mood swings before like all people do but these swings are different. Its almost like I can't stop myself. And im also generally happy too. My mum told me this morning it was like she was talking to a crazy person yesterday.

Hi Troy!

Tonsils out here. I did have positive antibody tests, BUT they were only weakly or moderately positive when diagnosed while I had severe to total villous atrophy.

My antibody tests were low when compared with damage - did having my tonsils out at age 7 effect the amount of antibodies produced? No idea -- I did learn with hindsight that my inner ear/hearing problems that caused them to remove my tonsils remained until my hearing magically improved at over a year gluten-free.

Interesting thought.

Oh wait...I've got kids with negative antibodies. One with positive biopsy, others that just improved gluten-free without dx -- they all still have their tonsils.

Ok maybe my theory was a stretch lol but i want to know why my test was negative but the biopsy was clearly positive. I'm only asking because my specialist wont say 100% its celiac because of the negative test, but is at a loss to explain the positive biopsy and i have the HLA-DQ8 gene. Also, i am responding to the diet so thats a good sign. But after so many years of misdiagnosis i cant get rid of that "what if they have missed something" thought in my head. The specialist said there could be lactose or fructose intolerance at play but freely admitted that both, while causing symptoms, nether cause intestinal damage.