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Diagnosis

NateJ

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NateJ Contributor
NateJ
Posted

Well after 10+ years I was finally diagnosed with Celiac yesterday at the Washington Universty Med Center here in STL.

They also said I have GERD, and possibly post-cholecystectomy syndrome.

It took 4 GI doctors, 1 surgeon, 2 primary care doctors, countless trips to the ER, 3 endoscopies, 2 colonoscopies, 2 negative blood tests, numerous CT scans, and more prescription drugs than I can remember.

I guess thats par for the course based off what I've read hear. I hope future people don't have to go through want I'm going through.

That being said my new GI is awesome. Its actually a team of med students led by a GI specialist.

They managed to get all my past test results from different Drs and hospitals, pathologies, blood work. They even had my biopsy slides waiting when i had my office visit and showed them to me. My appt. lasted 2 hours, but was probably the most beneficial dr. visit I have ever had in my life.

The Drs. were well informed spoke great and put together a plan for recoverey and treatment. I've never had a Dr

take such time and care with me before.

So, i'm supposed to continue gluten free for the next 2 months, she changed my questran to 3 times a day and my prevacid to 2 times a day to combat my GERD and if I'm not healing in two months or getting better they are going to put me on steroids. Has anyone else had to do that?

I'm still learning what I can and cannot eat, every day is a battle. I'm still thinking about seeing a nutritionist to help me with my weight loss.

I just wish now I could go back and undo my gall bladder removal, I think they did more damage than anything.

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eatmeat4good Enthusiast
eatmeat4good
Posted

I'm so happy for you Nate! Wow! A whole team of Dr.'s with the good one at the top of them. It sounds like you have had such a struggle. You must feel really good at least being in capable hands. As to your steroid question, I was on 5 mg. of prednisone for a few months when they knew I had an autoimmune disease but didn't know which one. At first I felt wonderful, then a few weeks in moody, then got stomach pain, pain pain. But that could have been because I was still eating gluten so the steroids couldn't keep up counteracting the gluten. I didn't know about Celiac then.

In the past when I have had to take short courses of steroids they helped a whole lot. They probably would have helped me more if I knew about the gluten thing but I didn't.

So you are on the really right track now....Wonderful!

NateJ Contributor
NateJ
Posted
  • Author

I'm so happy for you Nate! Wow! A whole team of Dr.'s with the good one at the top of them. It sounds like you have had such a struggle. You must feel really good at least being in capable hands. As to your steroid question, I was on 5 mg. of prednisone for a few months when they knew I had an autoimmune disease but didn't know which one. At first I felt wonderful, then a few weeks in moody, then got stomach pain, pain pain. But that could have been because I was still eating gluten so the steroids couldn't keep up counteracting the gluten. I didn't know about Celiac then.

In the past when I have had to take short courses of steroids they helped a whole lot. They probably would have helped me more if I knew about the gluten thing but I didn't.

So you are on the really right track now....Wonderful!

Thanks, I"m still somewhat skeptical about the whole thing. I guess years of being sick will do that to you. But there is a small flicker of hope in my brain now. So i'm just going to cling to that and hope things get better eventually. I do feel somewhat better after 4 weeks gluten free, but I'm still having stomach issues and fatigue real easy.

And yeah if anyone lives in or around St. Louis I highly recommend Wash U!

Simona19 Collaborator
Simona19
Posted

Thanks, I"m still somewhat skeptical about the whole thing. I guess years of being sick will do that to you. But there is a small flicker of hope in my brain now. So i'm just going to cling to that and hope things get better eventually. I do feel somewhat better after 4 weeks gluten free, but I'm still having stomach issues and fatigue real easy.

And yeah if anyone lives in or around St. Louis I highly recommend Wash U!

Hi!

I would like to ask you a favor. Can you give me the info on you doctor, or just his name? I would like to contact him about my other issue. After 11 monts of four ER and countless doctor's wisits, many tests and blood works, nobody was able to tell me yet what is wrong with me. I found out about the gluten and milk allergy by accident, but the main issue is still unresolved.

I even wrote to the show DR. OZ (so far, no answer).

I need to find out what is wrong. I feel like by not knowing what is wrong, I will miss "some deadline", and it will be to late for me to treat it, or it will be to hard to get rid off.

NateJ Contributor
NateJ
Posted
  • Author

Hi!

I would like to ask you a favor. Can you give me the info on you doctor, or just his name? I would like to contact him about my other issue. After 11 monts of four ER and countless doctor's wisits, many tests and blood works, nobody was able to tell me yet what is wrong with me. I found out about the gluten and milk allergy by accident, but the main issue is still unresolved.

I even wrote to the show DR. OZ (so far, no answer).

I need to find out what is wrong. I feel like by not knowing what is wrong, I will miss "some deadline", and it will be to late for me to treat it, or it will be to hard to get rid off.

Dr. Jean Wang at Washing University School of Medicine in St. Louis.

She is one of the GIs on staff there.

Hope you can get some help.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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