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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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    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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