suspected crohn's, negative colonoscopy, feel miserable- please help

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go star
Regular Member

Date Joined Apr 2017
Total Posts : 27
   Posted 4/15/2017 8:04 AM (GMT -7)   
So, I have many symptoms of crohn's. my GI thought I definitely had a IBD after a barium x ray --- there showed some inflammation -- but later was told that it could have been a shadow, where the colon turns, after negative colonoscopy
thing is....
i am having diarrhea 5-10 times/day
i am so underweight-- lost 20 pounds in 2 months. 101 lbs at 5'7.
i have neuropathy and arthritis now. skin rashes. red bumps that resemble bruises all over legs.
glossitis. (swollen tongue)
and there is a hard mass in my right side of my stomach and it feels like there are needles on that side.
also, had slightly elevated WBC. (2 months ago when had colonoscopy)
enlarged lymph nodes too

the neuropathy, glossitis, arthritis, chronic fatigue, showed up a month after the scope. diarrhea has been constant for 1 year or more.

i gave up on the GI after the scope because i felt so stupid and embarrassed. but i have an appointment to go back next week.....
how can this just be IBS?
what tests can be done to test further?

saw a doctor yesterday and she thought i had celiac.... but did no tests. just gave me the dx...
i just feel horrible. all over my body. no one can find what is wrong.
i have accepted i will likely live in pain with no relief forever.

Post Edited (go star) : 4/15/2017 9:26:28 AM (GMT-6)

Regular Member

Date Joined Aug 2015
Total Posts : 151
   Posted 4/15/2017 9:02 AM (GMT -7)   
A celiac disease (an autoimmune disorder like Crohn's or Lupus) diagnosis requires blood tests (checking for antibodies) and biopsies of the small intestine (via endoscopy). A doctor can not guess! They are not following GI Association protocol! Celiac disease can impact more than just the GI tract. Please research more and find another doctor who test you (any MD can order the tests).

I do not have Crohn's (celiac disease and Hashimoto's Thyroiditis), but my niece does. She was diagnosed eventually via a pill camera after celiac disease was denfintely ruled out....but not for life as it can develop at any age and is the only AI disorder proven to be genetic!

Do not give up!

Post Edited (cyclinglady) : 4/15/2017 10:05:31 AM (GMT-6)

go star
Regular Member

Date Joined Apr 2017
Total Posts : 27
   Posted 4/15/2017 9:38 AM (GMT -7)   
Thank you @cyclinglady

it was in the ER
i am going to get the blood tests. the results were not even processed when i was discharged.
i want to know what it says.
i am having extreme pain in right abdomen. it is very hard compared to left side and has lumps.

Veteran Member

Date Joined May 2012
Total Posts : 3319
   Posted 4/15/2017 10:32 AM (GMT -7)   
I think it's worth going back to the GI to have an endoscopy to rule out Celiac. If Celiac is negative, ask for a pill cam. You can have negative colonoscopies but still have Crohn's if it's located in the small bowel.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

go star
Regular Member

Date Joined Apr 2017
Total Posts : 27
   Posted 4/15/2017 7:00 PM (GMT -7)   
Thank you.

I need to do pill cam-- they saw some inflammation in CT scan again...but it is not that inflamed they said-- i do not understand that.
I just got back from ER (was more of an urgent care)after abnormal test.
WBC in urine. other weird things.
they did iodine CT scan.
said i have possible appendicitis...i have never heard of "possible appendicitis"
gave me pain killers. sent me home with instructions to return for another CT scan in 12-24 hours, recommended.
and i have an appointment with GI this week.
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