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Not Diagnosed Yet..........

chuckybaby

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chuckybaby Rookie
chuckybaby
Posted

Hi everyone. About three weeks ago I was admitted to the hospital after being diagnosed with severe anemia. They have not found a cause as of today. About 2 weeks ago my doctor did the Celiac panel blood test but came back negative. Referred to Gastrointerologist last week. Thinks Celiac's is still a posibility even with negative blood test. Ordered a CT scan which I had done last week. No results yet. He did the CT to make sure I had no blockages in small intestine so he could perform the camera endoscopy next. Will be doing endoscopy with biopsy after that.

While I was in the hospital they did a upper and lower endoscopy. Only found Reflux and hiatal hernia in the upper. (This Dr. failed to do a biopsy).

Symptoms include constipation, anemia, leg creepy crawlies ( felt like ants crawling under your skin in lower legs, This has gone away after I was given 4 units of blood in hospital). tiredness and joint pain occassionally. My grandson was diagnosed with type 1 diabetes this year. Brother and aunt have MS. My mom said her mom always complained of stomach problems but doctors never found anything. I am of Swedish/ European descent.

I work in a clinic and the ARNP in Oncology/hematology has looked at my blood work and insists that I have Celiac's. Just by my blood counts and symptoms.

I remember getting hit with a nasty flu like virus around April...maybe this could have been the trigger??? What are my chances of being diagnosed with the biopsy?

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mftnchn Explorer
mftnchn
Posted

If celiac disease is advanced enough to cause significant damage to the villi, if you have a good doctor who does multiple biopsy samples and a good lab to do the pathology reports, you have a good chance of a positive biopsy.

However, there can still be negative blood and biopsy results but a very positive response to the diet. So once you finish your tests, regardless of outcome, try the diet.

I suspect that your friend who saw your blood work may have picked up a low total IgA, plus the anemia--perhaps a low ferritin?

Sounds like a likely family history and ancestry. Flu or any stressor can be the trigger. If like me, you've been constipated all your life--we probably have just been undiagnosed our whole lives. Celiac can be present but "silent" too--no symptoms.

About 20% of celiacs present with constipation, if I remember right from my reading.

ShayFL Enthusiast
ShayFL
Posted

Get ALL of the testing done including GENETIC and then commit to trying a gluten-free diet for at least 3 months to see if things improve. It sure sounds suspicious, but not definitive. A pos. response to the diet is a good sign.

chuckybaby Rookie
chuckybaby
Posted
  • Author

Thanks for the replies. I just received a call from the Gasterologist' nurse and I am scheduled to undergo endoscopy with biopsy on October 30. Apparently the CT scan was good. Now I have another month before I find out anything. How much gluten should I be eating before this biopsy?

Lisa Mentor
Lisa
Posted

Open Original Shared Link

The capsule endoscopy is the most advance test available at this time. I hope you get an answer soon.

chuckybaby Rookie
chuckybaby
Posted
  • Author

The specialist told me when I met him last week that he would do the following in order...CT scan to check for any problems before doing a capsule endoscopy. Followed by upper endoscopy with biopsy.

His nurse called me today to set up appointment for endoscopy.....still not sure if it was the capsule or regular endoscopy....She is sending me paperwork in the mail...Had a bad cell phone connection so I will know more when paperwork comes in.

jerseyangel Proficient
jerseyangel
Posted
Thanks for the replies. I just received a call from the Gasterologist' nurse and I am scheduled to undergo endoscopy with biopsy on October 30. Apparently the CT scan was good. Now I have another month before I find out anything. How much gluten should I be eating before this biopsy?

The equivilant of 3-4 slices of bread a day--the more, the better.

Best of luck! :)

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