Ruu
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by Ruu
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Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Yes, I hadn't made my home completely gluten free because I wanted to wait for the biopsy results, so you're probably right. I did have a positive TTG-IGG test, however, and its my understanding NCGS cannot be detected by a test. My gastro said we may have caught it early. -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Update: I had my endoscopy last week and immediate went gluten free afterwards. I felt better for 4 days. I slept better, no waking up at 4 am anymore, but on the 5th day I became nauseous again on & off. Then my gastro contacted me and told me that the biopsy (10 samples) came back clear. No evidence of celiac and my stomach and duodenum looked healthy... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
No worries! And that's actually a good question... I read other people's experience on what the other 3-5% could be (like hashimoto) but I haven't found any studies on that. We definitely need some more research for autoimmune diseases. -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hey, Onegiantcrunchie (lol). I am well informed on the purpose of the gluten challenge and endoscopy, but thank you for taking the time to explain for those who may be lurking. And no, my doctor was referring to the early stage of celiac where there is yet damage to be shown (damage from celiac doesn't just happen one day, it is progressive and damage... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I sent you a DM about my profession, I hope that's okay. I think phrased my question poorly. My gastroenterologist said that sometimes there is no damage shown in the biopsy (even with a positive blood analysis) which could mean early stage celiac, but this is not an actual diagnosis? Now that I am phrasing it this way it sounds like a question I can... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Thank you for sharing your experience. No, I do not think foods are more important than my health. I can't wait to start eating gluten free, but I'm still waiting for my endoscopy. I'm in my early thirties now and I just hope there hasn't been any permanent damage (I doubt that since I've been diagnosed with osteoarthritis at 19, and no one cared to look... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
No, I am not a doctor. The information I was taught about celiac is accurate, but it wasn't enough information. It was a brief lesson on it. If there is no damage in a biopsy, however, wouldn't this mean that people are walking around undiagnosed? It seems to be that in order to be diagnosed with celiac, is must show on a biopsy. I'm in the US, by the... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Agreed! Is there a test that detects early celiac before it gets to that point? -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Oh, the gastroenterologist explained it very well. There is a progression of celiac disease and in the earlier stages there's little to no damage, so it tends to get missed and people are misdiagnosed until later. My hesitation was with my general doctor who just went ahead and told me I had it without consulting a gastro first. -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I felt the same way as you, questioning if I really have it. The longer I keep eating gluten, though, the more symptoms (and worse) I have. Its hard to say what will resolve on a gluten free diet, but I would say for most people a lot of issues resolve or improve. Are you planning to see a gastroenterologist? I recommend ruling celiac out/in if possible... -
I just saw my gastro and got an endoscopy scheduled in 2 weeks, so I am in the same boat as you. I asked if he could let me know if anyone canceled so I can be seen sooner; he said yes. You can maybe ask to be put on a waitlist, or call every morning to see if anyone canceled for the next day? In the mean time, I'm -trying- to enjoy gluten foods while I can...
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Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I just want to update for anyone who is interested: My gastro said that with elevated ttg-igg, presence of genetic factors for celiac, and current symptoms make him 95% confident I have celiac disease. I am scheduled for an endoscopy where he is going to take ~16 samples and observe the damage. I feel I am in good hands with someone as thorough as he... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I just googled this real quick: https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/gluten-sensitivity-testing/ Its concurrent with what I've been taught... even testing for wheat or other allergies is iffy and is used as a guide or starting point rather than the answer. -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I was thinking along those lines as well and started looking up specificity of the test. According to Quest Labs (which is where I got it done), they state the TTG-IGG has a 95% specificity for celiac disease; this means 5% can be a false positive. Its not exactly the answer to your comment... in my practice, if a patient says they feel better without gluten... -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I was thinking it could be that as well; though I'm not sure it would cause elevated TTG-IGG. In any case, I'll keep it in mind and go gluten free after the endoscopy regardless of what the results are. Thanks, Trents! -
Diagnosed with celiac a little too soon
Ruu replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hi Scott; thank you for taking your time to read and respond to so many posts. I will keep eating gluten and hopefully I get an endoscopy sooner than later. 🤢 (On an unrelated note, I am originally from Santa Rosa; its nice to meet others from there.) -
Hello everyone! I just got done seeing the doctor today and I'll be honest... I came in prepared to advocate for myself; I had facts, sources, and Mayo Clinic's diagnostic flow charts ready. However, my doctor took one look at my HLA-DQ8 variant and TTG IGG of 15 (less than 6 being normal), listened to my symptoms, and said, "I'm certain you have celiac...