NeverLikedRollercoasters
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by NeverLikedRollercoasters
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I guess the complex I was taking wasn't quite enough. I was taking them twice most days and I would still think it would get me out of the hole if they were even close to working. Had a visit with my GP and I've switched to liquid B2 and sublingual B12 and also got on weekly B12 injections. My urine is now a yellow color after taking the liquid B2 so I guess...
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Also, I want to add that in those pictures of hematocrit and hemoglobin, those red spikes are from when I was experiencing a reaction of which I assume was due to gluten.
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Hi Trents, thanks for the reply. I have been gluten-free for about a year and a half now. But in the beginning, it took probably a good 6 months to navigate around and I kept contaminating myself. For the past year, I have had 1 light glutening and 2 really bad ones, so even though I'm gluten free, I guess I'm still learning, or I'm just really really sensitive...
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I created a lengthy post last September and received a lot of good information from some of you. For a quick recap, I've had a horrible time with various doctors and have not received a concrete diagnosis in anything as of yet, although everything seemed to point to Celiac Disease, and in my opinion it still does. I also received a diagnosis of Hemochromatosis...
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mystery tooth/gum pain
NeverLikedRollercoasters replied to cristiana's topic in Related Issues & Disorders
Hi Cristiana. Although I don't have a concrete celiac disease diagnosis due to many reasons, I have nothing else to explain all my symptoms when I eat gluten as just about everything else has been ruled out. I just wanted to respond to this because I haven't seen anyone else really mention it. I've had bad teeth all my life and have had a lot of dental... -
Just want to jump in and make sure your test was proper. You need to be eating gluten for at least 6-8 weeks prior to the blood test and 2 weeks for endoscopy biopsies. From your post it sort of sounds like you ate gluten for 1 day and took the test in the same day which would not be proper at all.
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Yes, but I can't explain it. There's plenty of articles about it, but there's no determined reason for it. I don't know enough but for some reason it's only Hep B vaccine, not the A. Just a few articles I've found but there's tons: https://celiac.org/about-celiac-disease/related-conditions/hepatitis-b/ https://www.ncbi.nlm.nih.gov/pmc...
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@Posterboy @cyclinglady @DJFL77I and others following along here.. Just thought I'd swing back in and give an update. I finally got my referral to go through for Mayo after being denied on my previous insurance. So, I went last week and spent an entire day going through testing and imaging. Originally, I was sent there for hemochromatosis with gastric...
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Entirely incorrect sir. Maybe 6 drinks in a week and no more than 3 in one day. Edit: Never liked getting pee drunk to begin with. Maybe been 'drunk' twice in my life. Used to just like sippin' a beer (mostly Guiness). I could make 1 last 1/2 an evening. Only had 1 drink in over 3 months now so I'm sure I'm not an alchy
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Apparently it can cause quite a few issues. One thing I'm confused about is my doctor said it typically takes years to accumulate and cause damage to organs. I asked why my iron levels were fine in February, and my ct scan a year ago didn't show any issues in my liver and he didn't really have an answer for me. But my GI symptoms started long before this...
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This might have to wait until Mayo can get me in. Think is, I don't really eat anything fatty except maybe a steak once in a while. Furthermore, that stabbing pain near my gallbladder only hurts when I have a flare. And seems to be positively affected by PPIs which leads me to believe it's a duodenal ulcer. Can't really be sure. I recall the first time I...
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I know everyone is on pins and needles waiting for an update, so here it is. Confirmed diagnosis of hemochromatosis and had my first phlebotomy last friday. I have moderate damage to my liver and notes of iron in my vertebrae. Doctor doesn't want to push it so we're doing them in 3 month intervals while checking my iron levels each time. He wants...
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I'll be seeing my primary this week and will ask for a full panel. He's on my side so he probably wont give me a hassle. Thank you @Bebygirl. I have been tested for cancers of the marrow / bone, and any other genetic mutations my hematologist recommended. All came back clean. Also, only one of my tests over the past year showed elevated white blood...
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Thank you again Posterboy. Are you a bot, by chance (hehe just kidding). But you seem pretty knowledgeable. I will look into that. I'm assuming part of my fatigue issue is the iron overload as well, but who knows. No problem for me.. call me a sissy if you will but I've never been able to swallow pills. Had a bad experience as a child and unless...
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Right on breddah! Soon as I can make it 8 hours without a nap lol.
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Hey guys, just finally got a call from my doc. The wait doesn't help the anxiety at all. Anyhow, confirmed deficient in thiamine and start 100mg daily. Also, I've tested positive for two variants of H63D genotypes and with evidence, I have hemochromatosis (still not out of range ferritin though). Doc said he was quite surprised to see it. Have a liver...
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@Posterboy, @knitty kitty, @cyclinglady I just got my B1 results from quest. Haven't spoke to my doctor yet, but I just went in to get the genetic test for Hemochromatosis. Anyhow, I'm deficient in B1. Don't think this is the Erythrocite Transketolase test though as Posterboy mentioned. Pretty sure it's just the whole blood test. Edit: It...
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Posterboy, you are filled with info. Thank you. I still don't have answers, but I think you're right about the B1 test not being correct. However, just got a call from my hematologist. My 2nd Iron test was still abnormal and NOW he wants to do the genetic test for hemochromatosis. I suspect I should have at least the B1 whole blood test results in a couple...
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I really think it is. I did have it biopsied when it was inflamed back in Jan but I'm not convinced they did it right. I watched her use the 'core tool' right on top of one of the blisters. I've since read that it needs to be next to it. Pathologist came back with dyshidrotic eczema. Strange it only appears after getting sick though. I'm half expecting to...
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I haven't tried that one. Last year, this was one of the first things I noticed popping up in me. Quite a while before I started having horrible GI issues and I was still eating gluten. Right around the time my GI issues really ramped up, it really blew up and was pretty much a constant rash for about 4 months straight. This year, it's been kinda dormant...
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Posterboy, too kind. Thank you for all the info. I'll hit the links later on. Just for reference, this picture was taken last year the first time it occurred about 3-4 weeks after when all the blisters popped. I posted this in a thread under the DH section a few days back too. It only comes about a week after I get my first symptoms (migraine/troubled GI...
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Wow Posterboy, thanks for all of that. It's quite over my head. I did try to pronounce that test properly to my doctor and I'm sure he knew what I was saying, however, I don't know exactly what he ordered. All I know is i read on Quests site prior to going to the doc that there's specific handling for the sample, and watching/hearing the nurse try to decipher...
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I have not had a full panel test for vit/min. Over the course of the past year, I've had tons of tests. None of them include B1/Thiamine. I have only been tested for iron, B12, and vitamin d (I was deficient in this one). Like I said, seemed as though they never tested B1 before in the hematologist office.
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I certainly will. Like Knitty Kitty, if I can help someone else who is having as much of a hard time as me getting any kind of diagnosis, I will be happy to help. This is complete utter hell not knowing what is wrong when I get so sick and doctors just shrug and/or not order the proper tests at the right time. I'm disgusted by it really.
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So, no to the hemochromatosis since my ferritin is in check. He ordered the iron test again in case the labs were faulty. He didn't order the genetic test because the labs don't show it, but he agreed getting the thiamine checked. Funny thing was the nurse didn't quite know how to handle the thiamine blood draw. I guess they don't do it too often and there...
