Crohn's Disease Forum » Your Story » Hoping for Diagnosis Soon

02-05-2018, 02:50 PM   #1
Danibee's Avatar
Join Date: Feb 2018
Location: Lake Mary, Florida

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Hoping for Diagnosis Soon

Hi all. I know, the title of my thread is bizarre, but I've been dealing with whatever this is for 4 years now and I'm just ready to move on. Brief history:

43 y.o. female, chronic constipation and long history of internal and external bleeding hemorrhoids.

4 years ago I started feeling tired all the time and no amount of sleep helped. Got blood tested and ferritin was 5 and hg was 10. Also had positive test for blood in stool. Saw Hematologist who scheduled iron infusion and referral to GI. Started having mild stomach pain. Tested negative for H.Pylori. GI started standard work-up - endo, colonoscopy and capsule endo. Said there was an AVM in my small bowel and what appeared to be NSAID damage in my stomach. Double balloon enteroscopy to deal with AVM. Surgeon after was MAD - didn't find AVMs. Said it was a waste of his time. GI doc insisted it was NSAIDs, although it didn't make sense - I didn't take them regularly.

1-1/2 years later same thing with ferritin and fecal test. Iron infusion again.
Pain started even more. Stabbing pains had me doubled over. Severe bloating, gas, breathing labored, etc... Had all scopes and camera pill again. Found nothing. Pain got worse - scheduled ultrasound and CT (they thought it was gallbladder). All negative. GI doc blamed NSAIDs again, even though I had specifically restricted my use of them in the past year and a half. Pain eventually went away.

1 month ago - tired. blood test showed low ferritin and positive fecal test. Iron infustion again. New GI doc this time. Endo, colonoscopy scheduled for this Friday. Pain started last week, today is bad. Doubled over, gas, diarrhea, feeling of dizzyness and flushed, along with heavy feeling in chest (breathing). Pain at it's worse today.

It's pretty sad when you wish for IBD, isn't it? I just want answers so I can move forward with whatever this is. New GI is open to all possibilities, so I'm hopeful.
02-05-2018, 03:53 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I hope you can get some answers soon.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-05-2018, 11:55 PM   #3
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cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Welcome Danibee,

That sounds awful, you have been through so much. You have found a great place to meet understanding and knowledgeable people. I hope you enjoy the forum, and find what you are looking for in the way of answers.

Warm regards,

02-06-2018, 06:05 PM   #4
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Jabee's Avatar
Join Date: Oct 2016
Location: Massachusetts

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Did your first GI test you for celiac disease? You can have a simple blood test for it and an endoscopy will show blunted villi. My only symptom before being diagnosed with celiac disease was unbelievable stomach pain—in the region of my gallbladder so they ruled that out first. Glad your new GI has you scheduled for tests.
02-07-2018, 01:08 PM   #5
Danibee's Avatar
Join Date: Feb 2018
Location: Lake Mary, Florida

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Thank you Jabee, cmack, and ronroush7.

Jabee - She ruled out Celiac via endoscopy. I don't see any other blood work beside iron panels, CBC, and some miscellaneous ones to rule out pancreatitis. I've had 3 endos and capsule endos. If I remember correctly, she said she ruled out celiac. I'll have to follow up on that....

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