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High or Fluctuating Chromogranin A Level: What does it mean?
Neuroendocrine Tumors (NETs) | Last Active: Jun 18 3:39pm | Replies (184)Comment receiving replies
I have been diagnosed with Crohn’s iliteus, and IBS. However, the problem is the stool samples came back normal and no active Crohn’s or IBS. I still have diarrhea, and my stomach is hurting so bad; it rotates to my back, so it hurts to walk sometimes.
I have lost any weight but that’s also due to the fact that there is something wrong with my esophagus. So I have been drinking the Ensures with calories, so that I don’t lose weight bc of having trouble swallowing food.
Replies to "I have been diagnosed with Crohn’s iliteus, and IBS. However, the problem is the stool samples..."
Hello @kaforester3
As it has been a while since you last posted I was thinking about you and wondering how you are feeling now. Have you had any more diagnostic lab tests or scans?
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Hi @kaforester3,
It sounds like you have had a lot of digestive tract problems. Problems with swallowing makes eating so difficult.
Has your doctor ordered the 24-hour urine test (5HIAA) as well as a serotonin blood test? If not, I suggest that you request both tests.
You mentioned having an octreotide scan. There is another test, more precise in finding neuroendocrine tumors called 68Ga DOTATATE Positron Emission Tomography (PET). Here is a link that will give you more information about this test, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/. You might ask if a hospital in your area has this type of equipment available.