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An update-More tests and information

pikauchu
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pikauchu Apprentice
pikauchu
Posted

So, I got a second opinion about my gallbladder from a different doctor. This time a Gastrointestinal surgeon. He quickly looked at the tests that I had done and was very confused they even did a Hyda scan. He said it was completely and 100 percent unneeded. He said, once I showed I had gallstones on my ultrasound that they should have immediately booked me for a gallbladder removal surgery, which is what we actually ended up doing. I had it done on Thursday of the 15th. He said afterwards that there was a bunch of scar damage on the gallbladder and looked like two to three years of damage. Before the surgery, I went back to my primary care doctor and explained what was going on in a little more detail. I added a bunch of issues that had nothing to do with my stomach. The main concerns were that I keep passing out and that I have severe numbness and tingling in my feet and sometimes my legs. Occasionally making it even hard to walk. They go numb when I'm sitting, or standing, it doesn't matter. Followed by the tingles and pins and needles feelings. She diagnosed me with parenthesis ( can't spell that right).... and did a BUNCH of tests. She checked to make sure my Graves disease was inactive. She did a CBC with differential, as well as a full metabolic panel and b12 test. She also checked for multiple melanoma, which thankfully came back negative. Please also excuse my typos on these names. I'm too tired to care tonight to spell them right.  She also tested me in the doctor's office for why I'm getting dizzy. she did a test that I have to lay down and they check my heart and blood pressure, then do it sitting up, and then do it standing up. Safe to say, I failed this test and she said I needed to be referred to a cardiologist and a tilt table test. She's checking for POTS. Postural orthostatic tachycardia syndrome. I have a friend who has this, but also did some research on my own and that it can be connected with Celiacs disease. 

So my b12 came back very low. I have a friend who has already taken shots, and she said mine are very low. Mine was 189. That would probably explain the numbness and tingling and maybe some other symptoms, or why my legs are randomly going numb... It sometimes is hard to walk cause I can't control my left leg the way I normally do. It also is awful to stand... I'll be at work and my heart will go all the way up to 165 when doing anything physical and its hard to drive with my job because my feet are like constantly numb... 

I had High RBC, and low MCH, with borderline low MCV. I also had high total CO2 and while my glucose was high at this blood test, my Ac1 is normal. I'm still awaiting dermatology to figure out what this rash is, and I'm still at the moment recovering from the surgery, but I will see that doctor in a few days. He said before the surgery that it's possible I have celiac and he wants to redo the endoscopy and maybe the blood draw. I spoke with my brother, who apparently also takes b12 shots twice a week... He is a confirmed celiac. I also am going to be referred to neurology but she doesn't want to do that until after my b12 normalizes to see if that helps any of those symptoms. Seems like POTS and b12 and anemia can all happen with Celiacs. 

 

I just find this all a bit overwhelming. No one really is too concerned about my high DPG test, or weak positive in conjunction with these other results. I am because there has to be a reason why I am not absorbing these. She also said she doesn't think I have anemia. I thought low MCH or MCV meant anemia but because my blood count is high, I'm assuming they are looking into other things. either or, the next step is to talk to my surgeon in a few days and see where we go from there, and show him the results they took. Maybe that will help him a little. He also took a panel of blood right before surgery. I liked him because he didn't rule it out. Then wait for the tilt table test from a cardiologist and she wants to put a Holter monitor on me, as well as an echo of my heart. But... there's the update. I don't know if anyone is having anything similar or has anything to add... but she already gave me the prescription for the b12... but i have no idea how to do the tests.. Feeling a little..... overwhelmed is an understatement. I'd appreciate anything anyone has to add. 

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Scott Adams Grand Master
Scott Adams
Posted

Your symptoms definitely sound like they could come from untreated celiac disease, and if you had a high DGP blood test for celiac disease, and a brother with celiac disease, then the likelihood you have it is even higher--a recent Mayo Clinic study found 44% of first degree relative of celiacs also have it.

Here is more info about blood test results, but a full blood panel for celiac disease should be done before you go gluten-free and/or get an endoscopy:

 

pikauchu Apprentice
pikauchu
Posted
  • Author
On 6/20/2023 at 8:16 PM, Scott Adams said:

Your symptoms definitely sound like they could come from untreated celiac disease, and if you had a high DGP blood test for celiac disease, and a brother with celiac disease, then the likelihood you have it is even higher--a recent Mayo Clinic study found 44% of first degree relative of celiacs also have it.

Here is more info about blood test results, but a full blood panel for celiac disease should be done before you go gluten-free and/or get an endoscopy:

 

Yeah I had a previous endoscopy but they are going to redo that when I’m healed more from surgery. My gallbladder removal was good, but it was stuck to my stomach apparently and really hard to get out. They said it had years of damage and inflammation to it as well. :( he will redo bloods and stuff in a few weeks when I am more healed. I mentioned to him today about the b12 deficiency and stuff but he wasn’t as concerned about that as I thought. He said that could also be because of the gallbladder? I am still sticking with him cause I like this doctor, but I do have someone else I can go see if we don’t see eye to eye. He’s really nice though.

Scott Adams Grand Master
Scott Adams
Posted

What were the results of your previous endoscopy? Also, be sure not to go gluten-free until all testing for celiac disease is completed.

pikauchu Apprentice
pikauchu
Posted
  • Author
7 minutes ago, Scott Adams said:

What were the results of your previous endoscopy? Also, be sure not to go gluten-free until all testing for celiac disease is completed.

They said it was normal. But from what I gathered the doctor performed some in the stomach too. And only took I think 3 from the intestines. 

Beverage Proficient
Beverage
Posted

"High RBC, and low MCH, with borderline low MCV"

That sounds like my blood tests. I have Thalassemia, aka Mediterranean Anemia, a genetic anemia.  I'm half Portuguese, a few family have it also.  What is your heritage?

pikauchu Apprentice
pikauchu
Posted
  • Author
2 hours ago, Beverage said:

"High RBC, and low MCH, with borderline low MCV"

That sounds like my blood tests. I have Thalassemia, aka Mediterranean Anemia, a genetic anemia.  I'm half Portuguese, a few family have it also.  What is your heritage?

She said I didn’t have anemia and that my levels were messed up due to low b 12. I am however going to mention this because I did look into that condition and it sounds plausible. Also still think I have possible celiac from the one positive test and it’s just really early. I have a bunch more tests to complete. Tomorrow is my echo. 
 

further information from my surgeon is that my gallbladder was super inflamed and was stuck to my stomach, as well as the severe scarring

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