NeverLikedRollercoasters
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by NeverLikedRollercoasters
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Yeah, I think I will drop it for now (but I miss all the things so much). I've always wanted to get good at cooking so this has kind of forced me to. I rather enjoy it really.
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Thank you. I already dropped dairy because that immediately gives me explosive D. The soy, I was vegetarian for almost 20 years until 2 years ago. Thought the tofu was screwing with me originally, but then the beer too. So, I'm not sure about soy, although about 4 weeks ago, I cooked with certified gluten-free soy sauce and that's when I started feeling...
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Long answer. As a child up until about mid 30s I would go multiple times in the morning, back to back. Always on the softer side. Lots of upset stomachs but not usually D. Then, when my gut issues started about 5 years ago, I became somewhat normal by going 1 time shortly after waking in the morning.. still soft. Not really sure why it changed then but it...
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I had to order the blood test myself after 8 weeks gluten-free because my primary (same one who ordered the CT) refused to order it for me when it was crucial (should have had them write it in my charts that they refused). I was way too sick at the time. The only thing that had any effect on improving my health was taking it upon myself to go gluten-free...
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Hmm.. not yet. Just curious why you totally rule out celiac? Just because my biopsy didn't show it? I'm pretty sure I can talk my doctor into ordering the gene test tomorrow for hemochromatosis. I already know I have the DQ8 gene for celiac. And I know it's possibly just sensitivity, but damn I get so sick with all the classic symptoms plus some.
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By the way, I can find some medical papers and some people who have developed secondary hemochromatosis after a celiac diagnosis and going gluten-free. But again, I want an answer but really trying my hardest not to self-diagnose.
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I have no clue. All I know is all these issues began with GI symptoms/rash/weird toenail. If it is fatty, I'm assuming it's minimal at this point so maybe it's just early on? Never had any pain on my right side until the day after my last endo where I had a really sharp pain in a single small spot. Just assumed I developed a duodenal ulcer after eating bread...
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Maybe, but also had ultrasound before the CT with no remarks. 2nd ultrasound a month ago remarked on it which prompted the MRI.
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I understand.. been doing some reading, but this same test in january came back all in-range. So, again, this is new since January, and probably closer to starting in March-July.
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I agree.. this is exactly why I posted with this title lol.
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Were you still eating gluten? By the time I got the biopsies taken I was 7-8 months gluten-free.
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Been tested for Hep.. negatory. Also, just got Hep A/B vaccines last month too but I've been told there's no reaction to those. No contrast for either the CT and the MRI. My CT scan from September last year only showed a splenic cyst and no remarks to my liver. But seriously about the alcohol, I don't over indulge but maybe for my low weight it could be...
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I'm not sure what falls under the liver test umbrella. My father passed away quite a while ago but the only person in my family that was obese was his mother. Again, this is new and I'm assuming has popped up since january, but if I had to guess, it was more around march. Furthermore, I had about 4 months of feeling normal from march to july, then I believe...
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Hey followers, I have yet to hear back from my hematologist, but I did put in a request to see if they'd order the thiamine testing and setup an appt tomorrow to discuss my results. I got a peek at my MRI and my blood work. Blood work for cancer looks good, but my total iron and saturation are too high while my ferritin is normal, and my MRI shows enlarged...
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lmao.. exactly. A troubled prodigy.
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By the way, the only 'answer' that I'm not accepting for now was from my 2nd GI. One day while he had his hemmorhoid tool deep up my ass while I was complaining that I wasn't feeling well, he asked if I use MJ. I answered honestly (I have a med card). As soon as I answered 'yes', he immediately jumped to that as my cause. He asked me to quit for a month or...
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Knitty Kitty.. sorry, no updates. I never got a call back from my hema doc. I expect a call anytime though because he'll have results from my other blood work and MRI. Thank you Posterboy. I'll read them when I get a moment. I have to emphasise something though. Those 'hangovers' happened over the course of 5 years starting in 2014. It didn't happen...
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I do take a daily multivitamin, but it's not enough. I really had to beg my GI to test me for deficiencies. I swear, they just don't want to diagnose celiac disease here. And my hunch is because there's no treatment/no cure/no profit. But, I was stern with him and I think he knows what I think of him now lol. Anyhow, he did order just the Vitamin D and...
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Good lord, Knitty Kitty.. are you an angel or what? I'm holding off. I was told by the receptionist I will get a call back today and hopefully get the ball rolling on this. I will say, my new hematologist was very receptive to everything I had to explain to him. I think he was impressed that I had all my documentation in place and even a list and timeline...
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No, no dye/contrast, and didn't feel any more sick than I did before. Actually, it was the first day in a month I actually started to feel a little normal. I will definitely keep you posted. I thought for a split second to just get some thiamine supplements now, but I'll give it a day and see if they can rush a test for me. Don't want to say I'm convinced...
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Knitty Kitty, I really think you're on to something. Maybe more-so than any of the 10 doctors I've seen over the past year. All those things you mention are me. From the high blood pressure to the slow moving gut.. all of it. I already called my Hematologist to check if it was already ordered. They're going to call me back today and let me know if it was...
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Thank you Scott. I have had it biopsied but I'm skeptical it was biopsied correctly. They said it was DE instead. I just created a post under the 'not diagnosed' section this morning if you feel like reading a novel about my diagnosing journey.
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This too. My MRI was for my abdomen. It was about a 40 minute procedure and at some points I could feel the MRI pulling on my organs. Afterwards, i mentioned it to her and she said sometimes it can do that if there's specific vitamins or minerals, but more importantly, she mentioned she saw some white specs during the imaging in my intestines and just thought...
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Knitty Kitty, thank you for replying. I will look into that. It's funny you mentioned this. I read through the article and although I didn't quite understand everything, it does seem similar. In fact, it mentions that they were going to diagnose CHS. I've been reading a lot on that as well since I am a daily user. As soon as I mentioned that to my 2nd GI...
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I have this! It started on my right ring finger along with a ton of other symptoms including gastric. Mine looks like DH to me. Tons of tiny puss-filled bumps that pop then leave pin sized purple marks. It has since shown up now on my left ring finger too. Been told it's dyshidrotic eczema by 2 doctors. I had it biopsied by a dermatologist, but I'm not so...
