wooya replied to wooya's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsThanks so much for all your advice - I'll be pouring over the reading material to see what I can learn. That's fascinating about the weak tTG results - my doctor obviously didn't get that memo, because when I asked what the odds were of false negatives & positives, she found a paragraph about it being around 90% accurate. Still, I give her credit for even thinking of celiac for me in the first place. Here's another variation on the sensitivity question... do people usually have reactions to gluten in different forms, or different proportions? I've been testing my reactions to a variety of things I know have gluten in them, and so far I've had bad reactions to meals that are mostly heavy, gluten-concentrated, and warm (pasta, stuffing, buckwheat pancakes). But then tonight some friends brought over a massive loaf of fresh bread and some beer, and that plus a salad was all I ate. I feel perfectly fine, and that was an undeniably large load of gluten. Confusing. Perhaps what I'll do between now and July is do a two-week gluten-free diet just to see if I react to any foods during that time. Hopefully that wouldn't be enough to throw off the tests if I stop it a month before I get more blood work done. Then I'll ask the hematologist to do the other tests you mention. I don't think I could get Enterolab tests since I'm in Canada. In the meantime, I'm trying not to get too fixated on the notion... but I couldn't help noticing that there was nothing I could've eaten at dinner tonight if I was on a gluten-free diet. Croutons in the salad, y'know...
wooya posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHello all... I've read a bunch of somewhat similar stories on this forum but am hoping I can get some insight from you guys. I generally feel like a pretty healthy person - if I do have any kind of gluten issues, I'm very lucky not to be going through what some of you seem to be. But my doctor's been trying to figure out why I'm mildly anemic. My iron stores are apparently okay but I'm not absorbing iron from supplements as well as I should, so she's got me an appointment with a haemotologist in July. She asked me if I get diarrhea, which I occasionally do but have never really been able to trace it back to anything... it never occurred to me that I might be gluten intolerant since I can eat bread & baked goods just fine without it bothering me. So she decided I should get a tTG just to be on the safe side, and I got that done last week. Over the past week I started reading about celiac, and was surprised to find how many peoples' stories here sound like my own... anemia... no major symptoms, just random & intermittent digestive upset, not always correlated to the same foods... northern European descent... and while I'm not usually prone to reading about an ailment and then thinking I have it, but the end of the week I was pretty convinced I was gluten intolerant. It seemed obvious. I had two reactions this week to fairly gluten-heavy foods, and thought, well, that's it then. But my tTG came back solidly negative. She said anything < 20 is normal... I'm at 5. I also had a stool test done for intestinal bleeding, and that was negative too. B12 is normal, glucose is normal, if that means anything. Other than the anemia & occasional (bi-weekly, maybe) digestive woes, I seem to be in okay shape. Part of me is relieved, but the rest is uncertain... Gluten intolerance seems like a nice pat way of explaining two otherwise unrelated symptoms at once. I can't decide whether I'm just jumping to conclusions (gluten intolerance DOES seem to have so many possible symptoms that it could be easy to self-diagnose incorrectly) or whether I should really pursue this seriously. I was somewhat prepared to start a gluten-free diet today if necessary, but now I don't think I should. If the doctor in July wants to look into gluten intolerance further, I know I shouldn't be gluten-free or it'll affect the tests. And dammit, I don't WANT to go gluten-free. I love cakes and cookies and bread and soy sauce. I love eating strange eclectic meals at unusual restaurants. If I'm told I have to give it all up, then yes, I can do that... but I'm not so sure I want to do it unless I've got some real evidence that I have to. I guess my question is, what's the difference between gluten sensitivity and gluten intolerance? Under what circumstances could my tTG possibly be normal but I could still react to gluten? What other avenues should I maybe be considering *besides* gluten - other problems can cause anemia and dietary reactions independently...? Thanks for any advice you can offer!