NoGlutenCooties
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ARCHIVED How Accurate Are The Tests?
NoGlutenCooties posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
How accurate/reliable are the tests for Celiac? When I first requested my blood test for Celiac Disease, my doctor warned me that it may come back negative even if I had Celiac because the blood tests are not particularly accurate when they come back negative. A positive result, however, is much more accurate. My tissue number was also only 13. ... -
ARCHIVED Ridiculous Conversations
NoGlutenCooties replied to Auntie-Manda's topic in Coping with Celiac Disease
If you want a good laugh, along with several eye-rolling "SERIOUSLY PEOPLE???" moments... read the "Ridiculous Conversations" thread. It's a mix of funny and clueless-stupid-human-tricks. A good read. (I actually had someone try to tell me Italian Bread would be ok. I guess because it's white. <set sarcasm on> If it's white it can't possibly... -
ARCHIVED Huge Painful Tummy After gluten-free Dinner. Now What?
NoGlutenCooties replied to NanaV's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Most au jus has gluten. It is possible to make it without it, but that may be the culprate. Too easy to get them mixed up - or stir both with the same spoon, etc. -
ARCHIVED Hyper- Acid Secretion?
NoGlutenCooties replied to CeeLeighacLady's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Welcome to the forum! A few things come to mind after reading your post. First, have you tried taking a digestive enzyme? If you have ulcers you would want to check with your doctor first, but a good digestive enzyme can really help your body break down your food - especially when you're healing from all the Celiac damage and probably can't break them... -
ARCHIVED Newly Diagnosed
NoGlutenCooties replied to Mac0030's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Just wanted to add that I too was completely asymptomatic before my diagnosis... so you're not alone there. I heard about the bloodtest for it and seeing how it runs in my family I asked my doctor for the bloodtest, assuming it would be negative but wanting a baseline just to be sure. I haven't eaten a single crumb of gluten since the doctor called with... -
ARCHIVED Huge Painful Tummy After gluten-free Dinner. Now What?
NoGlutenCooties replied to NanaV's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Was there au jus on the steak? Gluten-containing steak sauce? It sounds to me like either cross-contamination or that your body just isn't ready for such heavy food. Have you tried a digestive enzyme? -
ARCHIVED Talking About Gluten Intolerance With Your Significant Other
NoGlutenCooties replied to I-want-nachos's topic in Coping with Celiac Disease
I told my SO that I have to stay away from all gluten because even a little bit of it could land me in the bathroom for days - not being really sure which end to hold over the toilet first. I didn't need to go into details... he got the picture. And I'm an asymptomatic Celiac, meaning that I haven't had any symptoms yet - but have been warned that once... -
ARCHIVED Did Anyone See The New Study Published About Gluten In Orthodontic Materials?
NoGlutenCooties replied to BelleVie's topic in Coping with Celiac Disease
Excellent!! Congratulations!! -
ARCHIVED Did Anyone See The New Study Published About Gluten In Orthodontic Materials?
NoGlutenCooties replied to BelleVie's topic in Coping with Celiac Disease
My mother just ordered aligners from her dentist - I can't be sure that they are the "Invisalign" brand - but her dentist said the same thing. No gluten issues. And he's a bit more on the "health" side of the medical profession, if you know what I mean, so I would tend to trust him to not just say things to placate people. As far as the tangential... -
When I was in highschool I was a little over 5 feet tall and weighed 98 pounds. I was eating four meals a day, including 2 school lunches at lunch time along with extra protein shakes and couldn't gain weight for nothin. I was anemic, tired all the time, and looked like a twig. I also had low blood sugar problems. Once I was out of college, things evened...
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- below normal weight
- confusion
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ARCHIVED What Next?
NoGlutenCooties replied to cmc811's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
If it were me, I'd request the biopsy - as long as your insurance will pay for it with what the doctor classifies as a "weak positive". You may want to beef-up your gluten intake for about 2 weeks prior to the biopsy - just to make sure there's plenty of inflammation in there for a firm diagnosis. If your insurance company won't pay for the biopsy, or if... -
ARCHIVED Did Anyone See The New Study Published About Gluten In Orthodontic Materials?
NoGlutenCooties replied to BelleVie's topic in Coping with Celiac Disease
Nope. You missed the second sentence: "However, the HLA-DQ2 allele is common and is carried by approximately 30% of Caucasian individuals." I don't think anyone is saying that everyone who has either of the genes actually gets the disease - or that 30% of the population gets the disease. Just that approximately one-third of the population has at least... -
ARCHIVED Sick, Shocked And Scared
NoGlutenCooties replied to biancad's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Just wanted to add that depending on how long you've been gluten-free, it may not be too late for a biopsy. It depends on how long it would take to get an appointment. When I got my bloodwork results I immediately went gluten-free... just couldn't see putting more poison in my body. It only took 3 weeks for me to get an appt. for an endoscopy and my biopsy...- 18 replies
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- heart attack
- liver biopsy
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ARCHIVED What Next?
NoGlutenCooties replied to cmc811's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Just wanted to mention that I don't trust the "weak positive" thing. When I was tested, the lab that did my bloodwork considered anything 11 and under as negative (different labs have different numbers). I was a 13. So I could have been considered a "weak positive". But when I got my biopsy, I had moderate to severe villi damage. This leads me to... -
ARCHIVED How To Overcome The "wants" + Anxiety
NoGlutenCooties replied to bburmeister0407's topic in Coping with Celiac Disease
Good luck staring down the pizza, and the donuts, and the bagels.... And all the other "crap" that's out there waiting to get you! -
ARCHIVED Did Anyone See The New Study Published About Gluten In Orthodontic Materials?
NoGlutenCooties replied to BelleVie's topic in Coping with Celiac Disease
My doctor estimated it at 40 percent. My gastro-intestinal doctor estimated it at 30-35 %. CeliacDisease.com estimates it at up to 40 percent: Open Original Shared Link From Medscape: "Approximately 95% of celiac disease patients express HLA-DQ2, and the remaining patients are usually HLA-DQ8 positive. However, the HLA-DQ2 allele is common and is... -
ARCHIVED Gave Up Gluten And Feeling Sick
NoGlutenCooties replied to WestCoastGirl's topic in Coping with Celiac Disease
A few things come to mind... How long have you been completely gluten-free? Often symptoms improve in a short amount of time, but sometimes it takes awhile. Some have reported symptoms getting worse at first - part of the healing process. You may also have other food allergies/sensitivities - which is common with Celiac folks. For example, being sensitive... -
ARCHIVED How To Overcome The "wants" + Anxiety
NoGlutenCooties replied to bburmeister0407's topic in Coping with Celiac Disease
So I had to stop by the mall this morning and being that I live in Northern New Jersey where it is waaay over-populated (I absolutely HATE this state) if I go to the mall I get there before the stores actually open so that I can actually get a parking spot that isn't two counties away. Anyhow... usually I would spend the extra time stopping for a cup of... -
This report was from Sept, 2011: According to Dr. Thomas O'Bryan (an expert and lecturer about gluten intolerance), this test records a false negative 7 out of 10 times. These false negatives are due in part to the physician's interpretation as well as the patient's condition at the time of the test. Physicians may interpret the test as negative if the...
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ARCHIVED Tested Negative For Blood Test...
NoGlutenCooties replied to madminx's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Interesting... not at all what my doctor told me just two months ago. I'm wondering if some of the false negatives are due to the variances in what different labs consider positive vs. negative? For example, my ttg IgA (I think I have that right... the tissue number) was only 13 and some labs would have considered that negative. But my biopsy confirmed... -
ARCHIVED Sigh...i Really Want A Doughnut
NoGlutenCooties replied to sweetsailing's topic in Coping with Celiac Disease
Donuts to a Celiac person: Open Original Shared Link -
ARCHIVED Sigh...i Really Want A Doughnut
NoGlutenCooties replied to sweetsailing's topic in Coping with Celiac Disease
The other night there was about a 10 minute window of time when I'm pretty sure I would have killed for an Oreo cookie. But then I think ahead to how I feel when I eat sugar and that memory made me forget about the Oreo cookie. (I'm an asymptomatic Celiac, so can't think back to gluten-related illnesses - but too much sugar makes me feel awful.) I think... -
ARCHIVED I Found This Awesome Article
NoGlutenCooties replied to bburmeister0407's topic in Coping with Celiac Disease
Thanks for sharing! Very interesting and in-line with other similar information that I've read - although this is the first I've heard of a fecal transplant. Aside from sounding icky I find it fascinating. -
ARCHIVED My Story
NoGlutenCooties replied to ceceliac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
It sounds like maybe the biopsy only showed minor damage because you were not ingesting much gluten at the time. Also, the intestinal inflammation tends to come and go so sometimes you can get a negative biopsy but then 6 months later it can show very positive. I agree with desperateLady - if going gluten-free makes you feel better, there's your diagnosis... -
ARCHIVED Tested Negative For Blood Test...
NoGlutenCooties replied to madminx's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Just wanted to add that you can get a false-negative blood test even while still eating gluten. Unfortunately, the tests aren't as reliable as one would hope. I've seen estimates that indicate a negative blood test result is only about 70-75% accurate, while a positive test result is about 97-98% accurate. That said, if you're already gluten-free the test...