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So it has finally been a whole year. I am making an appointment because it is time to get a checkup on my liver. Because of all of the screwing around that was done, not in particular in putting off my surgery in general, but once I showed up at the ER a week before Christmas in 2011 in more pain than I had ever been in with elevated liver enzymes, I get to spend the rest of my life playing the how bad is my liver messed up game. I still get pain in my liver, but my doctor told me to give it a year. <_< It has been a year, I can link the pain to no particular food, time of day, activity or anything else. It just comes and goes. It hasn't gone away since healing from surgery either. I am just crossing my fingers at this point and hoping I am not badly enough off that I'll need to be on a transplant list eventually. (This is what they were warning me about every time I ended up in the ER... but they wouldn't just take out my freaking stupid useless gallbladder!!! GAH!) Ok, done ranting.

Since I am going to be letting someone stick a needle in me anyway, I figure I may as well bring a laundry list of tests to do. I never came up positive on the celiac blood tests, although a full panel was run twice. I don't see the point running them again, waste of money, waste of a vial of blood. I do need a follow-up ANA, blah blah blah lupus. Whatever. I figure I should be tested for vitamin/mineral deficiencies. Should I be like... test for ALL the deficiencies!!!! Or do I need to bring a list in case the PA I get stuck with is a complete and total idiot. If I need a list, I have no clue what on earth I need on it. Is there anything else I should be giving up blood for while I've got a needle in me? I feel like there is something important that I know I know, but am forgetting. Old age and all that.

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Gosh I could have written that all myself. I have liver issues too and am going to the Dr. in a few weeks to be checked again for that. I am interested in reading these responses as I have the same questions you do about it all.

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Eh, i generally get everything done at once because my viens are hard to get to (they are deep). On adveradge it takes the tecnition 3 or so times before they hit them.

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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
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