Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New, Figuring Things Out.


bifidus

Recommended Posts

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 :).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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. :)

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,225
    • Most Online (within 30 mins)
      7,748

    Paulyw
    Newest Member
    Paulyw
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      I noticed eating gluten-free or CGF foods have higher sugar and sodium some. No added sugar protein bars I found better with plant fiber. I wanted to know what are you go to besides whole fruits/veggies that you find are healthy for you where you can feel eating normal without hurting yourself or health. I was looking into subscription based like Thrift to see if there is something that is healthier CGF that can make me feel normal. Thanks
    • Jmartes71
      Thankyou because I met up with K B with well known bay area hospital once and she said she knows I don't like to take meds, I said thats incorrect, I have issues.Thats the one that said I was deemed " unruly " when she admitted I was celiac when I asked why am I going through this.
    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.