if they were able to diagnose via colonoscopy?

Question

I had my first check-up with my GI since diagnosis yesterday. Not once crumb of gluten has entered this body intentionally and I’ve only had 2 “incidents” since going GF in early July. I was feeling pretty proud of myself and was going over all of the good things I’ve been feeling and noticing. I could see something in my GI’s face though. She was reluctant to tell me something.
Let me give you a little backstory. I was admitted to the hospital in June and was there for a week. My heart rate was 160 and my skin was bright red and flushed. They had no idea what was going on. They were testing me for things that I’ve never heard of and I was on continuous antibiotics for the whole six days. The day before release was when I had my endoscopy and colonoscopy. My G.I. was there every single day checking on me and she never gave me a clue that she thought it was celiac related. She told me at my visit yesterday that she was fairly certain it was when she did her initial assessment at the hospital and was happy that it wasn’t something more severe when they finally got the results of the biopsy back. Either way, the whole thing was traumatic for myself and my family because we had no idea what was going on until the biopsy came back. She basically explained that my body simply could not process the gluten anymore and was literally freaking out. This affected everything from my heart to my skin and everything in between!

Going back to my appointment yesterday, I had given permission for them to pull my records from my last colonoscopy (WHICH DID NOT INCLUDE AN ENDOSCOPY) from my previous GI in Pensacola from 2012. That was when they diagnosed me with possible UC because I had an ulcer in my colon and colitis consistent with UC, etc. So he said….
My G.I. was flipping through the records and stopped at the pathology report for the biopsy done. Blah, blah…”Celiac sprue”. Plain as day. In black-and-white. She is now pulling my records from my first colonoscopy when I was 18, 20 years ago. Two things. I had no idea that a colonoscopy could give you these results as well. I had so many questions but mostly I was upset. I was formally diagnosed this time via endoscopy, but what does that say for how damaged my intestines were in 2012 if they were able to diagnose via colonoscopy? Second, why the hell did my G.I. doctor in Pensacola not tell me? The last five years could’ve made all of the difference in the world. So many things have happened that were explained with the celiac diagnosis. I had no clue.
I am beyond upset, but the moral of the story is that if I would have taken my health into my own hands and requested records from the G.I. doctor, I would not have had to go through what I went through in June (and for the last 5 years…possibly more). I assumed that because he was the doctor that he knew what he was talking about. He took my gallbladder and told me I had UC. That was enough for me to assume that that was the extent of my problems. Man, was I wrong ?

I am not a person that allows myself to hold on to negativity. But, I simply cannot let this one go. I cannot make peace with this! I am just so very upset. Maybe it’s because the last five years have been hell on my body. I don’t know. Just venting, thanks for listening

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Tamara 3 years 14 Answers 341 views 0

Answers ( 14 )

  1. It’s unreal what you have been through. I’m glad you have finally been diagnosed and your body can heal.

  2. Well for starters, letting go of negativity and not holding grudges or whatever doesn’t mean you’re never angry. You’re so very right to be angry and upset about this, this is awful. Don’t beat yourself up about “not letting go” when you’ve had 24 hours to process that you could have been spared 5 years of misery. Let yourself be angry and mourn for a little while, then focus on moving on. I’m so sorry you went through all that and so glad you have a doctor now who has taken care of you properly.

  3. That is definitely irresponsible for them not to have passed the info along to you and I would call them on it. Most colonoscopies only explore the colon (Large intestine) and don;t go into the small intestine where the celiac evidence would usually be found. I am surprise this would even be noted on a standard colonoscopy unless it was a more extensive one that was meant to go all the way into the small intestine. But regardless of that, if he saw enough that he noted it, the info should have been provided to you.

  4. Cannot even sue them….

  5. Same happen to me but with hashimotos. I spent 8 years trying to get pregnant. They knew all along my TSH was not at a level that could hold onto a baby. Spent 30k on IVF. Eventually got diagnosed and treated… after having a kid. But now my 3 year old daughter has celiac. Some doctors suck and RUIN lives. Water under the bridge. What can I do? Anger only hurts me. I just focus on staying healthy and am VERY thankful for the GREAT doctors who go above & beyond for my family now.

  6. That is malpractice by negligence. I would consult with an attorney. Get your own copies of those records.

  7. So sorry you had to go through that 🙁 Thank you for sharing your story with us. It may help someone else someday. Doing something positive, by reporting him to the medical board, is a good thing. I understand your anger and you have EVERY RIGHT to be angry, for awhile. Just remember you need to work thru the anger so you can one day move on. You will never forget but you can make positive steps forward to take care of yourself now. Vent all you want here. That is what we are here for 🙂 And always will be.

  8. I am in pensacola. Maleesa Redish who is your GI here??

  9. Tamara, please try to be positive. Bad things happen to many of us while we are unaware. Thankfully, you now know the truth. Focus on your recovery and overall wellness. Find the right doctors and the proper eating plan that works for you. My doctors misdiagnosed me for far too long, and I was put on meds that only made me sick. They were not treating me, because the conditions they were meant to treat never even existed in the first place. Pray, and ask for help. The man upstairs will guide and heal you. Stay strong!

  10. Thank you all for your kindness

  11. I agree with China Lee. That was malpractice. You need to consult an experienced attorney.

  12. I had a similar “episode” last winter, except I had ruptured my esophagus and nearly died (my potassium was less than 2). I’m pretty certain now that it was gluten/celiac related. Your doctors did not disclose potentially life threatening info… it’s like doing an allergy test and not telling someone they’re deathly allergic to bees or peanuts! I’m so glad you’ve discovered the issue but please please please pursue something, anything, to get some kind of education to these doctors. You could save someone’s life.

  13. Your story is all too familiar to me! My GI doc did the two tests and told me some issues but never said that I had CD! Then he wanted me to swallow a camera to see the last few inches of the small intestine that neither endo or colo could see. Yeah, OK. NOT! At this point all of my other symptoms were 200% conclusive for CD. I went gluten free for 6 months and my internist was shocked at how significantly improved my blood test were! She also informed me that the biopsies are conclusive if the area tested is affected. You can read between the lines. My body was rebelling in so many ways with three autoimmune diseases, a GI bleed, heart issues, etc. Thank heavens you found the answer!

  14. Tamara Mock, I am also in Pensacola. It took me over a decade for diagnosis and so far my health care sucks!!! I had a conversation with a doc here in town (informal as we met at a coffee shop) and she said that i might need to go as far as birmingham to find a Celiac specialist. I have an appointment here in town on Tuesday. Can I ask who your GI was?

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