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Can't Get A Diagnosis! Frustrated!


nu-to-no-glu

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ravenwoodglass Mentor
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...

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csoctavia Newbie

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!!

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      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
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