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

Can't Get A Diagnosis! Frustrated!

nu-to-no-glu

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted
I just registered today. Hello everyone. I am getting tested for Celiacs and Crohn's soon. This is all pretty scary. I've been reading some posts and felt instantly sad for everyone. I'm 41 yrs old. No one in the family with celiacs ( that we know of). I was just wondering....Should my allergist or gastroenterologist test for this? I am so confused with everything. I went into the ER for throwing up for 6 wks from a sinus infection...3 days later...I might have celiacs or crohn's; have a cyst on my ovary; found spots on my lungs, and I am now on a very special gluten-free diet until I am officially diagnosed. Very overwhelming. Oh yea... I am vit b12 deficient. :( OK I am done pouting now. I will read more of your guy's stuff. Maybe I can get a handle on this. After a nap.....Thanks for listening.

The doctors putting you on the diet before they do any testing will cause the tests to be a false negative. However sometimes dietary response is the best test there is. If your doctors are going to test you need to go back on gluten until the tests are finished. Otherwise they will want you to do a lengthy gluten challege which can be a really nasty experience after we have been gluten free and started to heal.

  • 1 month later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


csoctavia Newbie
csoctavia
Posted

hi,

I'm having the same problem with getting a doc on my side.After my son,I gained almost 40 lbs (I'm 5' and never wieghed over 100)and can not lose it.My doc keeps saying its stress or IBS.I had no control of bms and was sick after every meal. I saw on tv this diet were you give up 5 things,one was gluten.I finally started to feel better! After the 21 days I entered everything back into my diet and was fine till I ate gluten.I have been off it for almost 4 months and now my doc just tested me.He sent me to five other docs that all said I should get tested for it,but he didn't agree. Ofcouse the test came out neg.He wants me to eat gluten for 2 months then come back.I don't want to be that sick again!! My doc finally decided that he is not comfortable saying I have celiac disease but if not eating gluten helps,don't eat it.He just told me this yesterday.Don't know what to do next,but maybe I'll just stop eating gluten and say the heck w/docs!!My only advice to you is do what makes you feel good,I take fiber choice in the morn to help with making it to the bathroom,and for your baby,butt paste,you can get it at wal-mart,it will cure the diaper rash up almost immeditly,I swear by it!!Hope I helped,and if anyone has advice for me,please do,I'm pretty much just giving up on docs and living my life now,but if you know how to lose weight,help please!!

Archived

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

Go to topic listing

  • 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. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing...
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      Insomnia help

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated. So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. I came off dairy completely next and it worked like a charm...
    3. wellthatsfun
      - wellthatsfun posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      nothing has changed

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent...
    4. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      48

      Severe severe mouth pain

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it....
    5. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      48

      Severe severe mouth pain

      Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,105
    • Most Online (within 30 mins)
      7,748
    kyocera
    Newest Member
    kyocera
    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

    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless!
×
×
  • 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.