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celiac or ibs or ulcer colitis

janis362529

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janis362529 Newbie
janis362529
Posted

Just starting to get a correct diagnosis after 2 years of misery. Background info 2 years ago I quit smoking for 18 months at which point i could not tolerate dairy, soda, shellfish, non room temp drinks without extreme diarrhea. Other foods would cause bloating and gas. I restarting smoking to try and get relief but didn't get much. My primary doctor said it was ibs and to remove gluten and see a gastro. This was 3 weeks ago. Last week I finally saw the gastro who wanted me to restart eating everything I had avoided the past 2 years as well as quit smoking and after 2 weeks get a colonoscopy to rule out ulcer colitis and blood work to rule out celiac's. This past week has been a roller coaster. If I do not have a cigarette I spend the morning throwing up after having a cup of coffee, instead of diarrhea I am almost constipated( i do pooh daily but it is so firm and painfully), i feel like I am constantly running a fever but hubby says I am cool to the touch, and lastly my abdomen hurts so bad rotating between stabbing knives or feeling like i did 100 sit ups.  Is any of this normal? How long will I feel like this ( i prep for the colonoscopy on Sunday by drinking magnesium citrate). Will 2 weeks of eating gluten give a positive test result after being gluten free for 2 weeks.  

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  I am sorry that you are so sick!  

These are the tests needed:

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I think you'll be okay after being gluten free for only two weeks.   Usually, you need to be consuming gluten daily for 8 to 12 weeks.  Make sure you are getting an endoscopy (mouth) and not just a colonoscopy.  The endoscopy is required for a celiac disease diagnosis.  Make sure four to six tissue samples (biopsies) are taken.  The colonoscopy can rule out other things like cancer or Crohn's.   Keep eating gluten until all testing is complete.  All results back in.  You would be amazing at lost records, etc.  

So, I just want to confirm.  You were only gluten free for 2 weeks over the last year, right?  

janis362529 Newbie
janis362529
Posted
  • Author

Yup I have only been gluten free for 2 weeks while waiting to see the gastro. Once I saw him last week he put me back on gluten. By the time I have the blood test done I would have been re eating gluten for 2 weeks. the gastro did not mention having the endoscopy done. He said if the blood test is positive its celiac's if the colonscopy is positive for ulcers its ulcer colitis. He doesn't think its IBS but said if both tests are negative then we treat for IBS.  

After wanting to eat normal I am counting down the days till I can go back to such restrictive eating. I'm so tired of feeling like crud

cyclinglady Grand Master
cyclinglady
Posted
 

Yup I have only been gluten free for 2 weeks while waiting to see the gastro. Once I saw him last week he put me back on gluten. By the time I have the blood test done I would have been re eating gluten for 2 weeks. the gastro did not mention having the endoscopy done. He said if the blood test is positive its celiac's if the colonscopy is positive for ulcers its ulcer colitis. He doesn't think its IBS but said if both tests are negative then we treat for IBS.  

After wanting to eat normal I am counting down the days till I can go back to such restrictive eating. I'm so tired of feeling like crud

You  might want to consider getting a second opinion from a celiac savvy GI because your GI is not following diagnostic guidelines as recommended by the American GI Association.  Geez, he is putting you out for the colonoscopy.  It makes sense to do both at the same time.  I bet your insurance will not pay for the endoscopy without a positive celiac blood test.  You could have H. Pyllori, SIBO, Chrohn's.   All those should be ruled out.   

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I know you feel bad and want to be well, but it might be worth it to slow down and do some research.:)

 

janis362529 Newbie
janis362529
Posted
  • Author

my insurance is not paying for anything until i meet a deductible of $3000. so I'm ok with not doing the endoscopy. I'm thinking he is leaning towards ulcer colitis because my main complaint has been the diarrhea since quitting smoking. But he wants to rule out celiac because of repeat miscarriages, past unexplained seizures, anxiety and constant low iron.

 

I have a huge fear of doctors and it took almost 2 years for me to feel sick enough to see my primary. She gave me 2 options remove gluten and see the gastro or remove gluten and if I feel better than just continue with the status quo unless I get worse. My husband forced option 1 on me so right now a 2nd opinion is equal to climbing Everest. LOL I am a huge chicken

cyclinglady Grand Master
cyclinglady
Posted

Ah!  I get it.  I hope that you find some answers!  I wish you well.:)

 

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