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New, Figuring Things Out.


bifidus

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bifidus Newbie

Hi everyone. First time posting. So after the last year and a half of suffering and two seperate docors telling me there was nothing wrong with me, I think I have pinpointed gluten as the problem. All the high night time cortisol, insomnia, gut pain which I thought were parasites, but never got any out ( except candida), blurry vision, hypoglycemia, bone and joint pain- my endo said i was too young to do a bone density scan, can you believe it? (I am 36) and referred me to a nuerologist, pyschiatrist- didnt even do any hormone level testing, just for diabetes. I had been getting baaad muscle cramps, then discovered magnesium and realized I was severely deficient in that. And my acidity level which stayed around 6. All the collagen wasting, muscle loss, it all makes sense.

About 2 to 3 months ago, I decided to go raw vegan. The first thing I noticed was my digestion improved immediately. the next day, normal stool. Then one day after doing 3 huge green smoothies before 2, I realized it was 8 pm and I wasnt hungry, no hypo and i slept 8 hrs that night, no drugs. People said I looked better. Well I work in a restaurant and it is near impossible to keep up the number of calories unless you are UBER prepared, and even then you cant stop and eat, so after about a month I decided to eat" regular food" again, just to make it through my shifts. Well the the glassy, blurry eyes with th horriffic brain fog came back, and I thought maybe the meat is too hard on my liver. The pain I was feeling that I thought was my liver may very well be the duodenim/gallbaldder area becaus after ingesting large amounts of magnesium citrate( in addition to the fact i drink lots of lemon water all day long) I had a 3 day stint in the bathroom, with what I think were stones all floating on top, hundreds, some were green, i never saw anything like that before. During this time i was researching osteoprosis and it kept coming back to celiac disase so I finally read about it, took a day to go gluten free and sure enough I was clear as a bell. So I did it 2 more days, and even with little sleep I felt 100 times better, I dont get that overwhelming fog exhaustion. It was not the meat being hard on my liver.

I know there is a test for celiac (I am scandanavian with blood type O) but in order to do it you start eating gluten again. I have children and its hereditary so i probably will do it. Since it is lifelong autoimmune It would explain my hypo diagnosis at 15, lifelong exhaustion, mood disorders, and of course my drinking was the worst thing I could have done. Once again, I have not been tested yet but this will be day 4 and last night I went out bowling after 4 hrs of sleep and working all day and last night I slept pretty good. I drink chammomile tea to calm any intestinal inflammation before I go to bed. I am still juicing a lot, even more now that I know my poor body was just starving for god knows how long. I am very concerened about my bones still, I will have to fight the doctor on that one. I really hope this is it and the war will be over and I can finally get my life back.

It has been so frsustrating having people tell you its "all in your head". I really have been down this road alone, and it completely destroyed my last realtionship. Today I am happy and energetic, and just a little optimistic :).

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mushroom Proficient

Hello and welcome to the Board.

If you have not been off gluten very long (say less than ten days - and it looks like about four) it is still possible to be tested and you have a reasonable chance of the test being valid. If it has been two weeks or more since eating gluten you will have to go back on it if you want a diagnosis (and it sounds like your doctor will need the diagnosis more than family and friends, to convince him to give you the testing you need - like the bone density scan.) If you can't get a positive test now then you can still stay on gluten and try again after you are nicely glutened up, which I know will be painful, but necessary if you want to attempt to prove it's not all in your head. If you have been back on gluten for a month, one more month should be long enough. Do you have a GP you can turn to for testing since your endo doesn't seem to be with the program at all??

The sad news is that many of us are non-celiac gluten intolerant which does not show up on the testing, but it is just as miserable as celiac disease, just not taken as seriously by those who do not have either :P I'm not sure why it is that when doctors don't know what the problem is they automatically assume you are a head case instead of realizing that they are ignorant. Too painful an admission, I guess ....

Good luck on whatever you decide to do and I hope you can get a positive test result. :)

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    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
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      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
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