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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      GI DX celiac despite neg serology and no biopsy

    2. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      6

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    4. - Silk tha Shocker posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    5. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,478
    • Most Online (within 30 mins)
      7,748

    Susan Gutenberger
    Newest Member
    Susan Gutenberger
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • Silk tha Shocker
      What is the best gluten free scanner app? I have the "gluten-free Scanner" app. I scanned an almond joy and it says it contains gluten when the package is labeled gluten free
    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
×
×
  • 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.