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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
      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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