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Saw Specialist 2nd Time

num1habsfan

By num1habsfan
in Related Issues & Disorders

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num1habsfan Rising Star
num1habsfan
Posted

Not sure if any of u remember but in February I had a endoscopy, and by some chance I got no call or letter to come back so went to my family doc. My family doc said nothing showed in results. Here's the crazy thing...

Last month I got a letter from the specialist saying I didn't show up to my May 14th appointment, so I had my follow up on Thurs. (Aug.23rd). There was plenty of interesting things that went on..

1. My family doc LIED TO ME!!! There was 2 things that were shown on the endoscopy results. I have a minor hiatus hernia, not bad enough to need treatment but enough to cause heartburn (and those mystery chest pains I never knew what they were!!). Also, it was refractory sprue he tested for (not Celiac) and because that didn't show up, this specialist actually BELIEVES ME that it's not Celiac-related causing my pains!

2. He gave me a prescription for something that he says is stronger than greatly Buscopan and should give me some pain relief

3. He's going to get a copy of my tests from Calgary, I explained I went there and my family doc told him to only test for Celiac even though the specialist agreed to test for Crohn's etc.

4. On Sept. 13th I go back for an ultrasound and small bowel follow through. If he's not satisfied with those results, he'd like to do a colonoscopy. :blink:

5. I had to get bloodwork done: CBC, CREAT, LYTE4, FER, UREA, CRPH, and under "other" he wrote Fe saturation

....Thats the whole story. I know it may not seem like a big deal but this is soooo overwhelming for me. In the last 15 months this will be 8 major tests, what person would even imagine having to do all that??? This is going to make university so much harder, too :(

If you have advice or whatever, please reply. I'm in need of some words and thoughts, even if it's not positive

~ Lisa ~

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Acersma Rookie
Acersma
Posted

I too have a hiatal hernia. Even minor ones are a major pain. I deal w/ a lot of chest pain. It feels like when I am bloating it pushes my lungs and everything into my chest and I get shortness of breath and of course the horrible reflux and heartburn. My advice for that is to wait 3 hours to lie down after all meals. Elevate yourself in bed either by elevating the mattress or your pillows. And no chewing of pills or of gum. Makes more acid which you don't need and eat very blandly for a while. hope something here was helpful.

Jody

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elye Community Regular
elye
Posted

Wow, Lisa...that's a lot to have been living through. At least with some answers you can hopefully move toward some quick recovery. If I recall correctly, you are also a type one diabetic. That alone is enough for anyone! No sage advice, just best wishes... :)

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num1habsfan Rising Star
num1habsfan
  • Author
Posted
Wow, Lisa...that's a lot to have been living through. At least with some answers you can hopefully move toward some quick recovery. If I recall correctly, you are also a type one diabetic. That alone is enough for anyone! No sage advice, just best wishes... :)

Nope, not diabetic (yet).

But everything else is more than enough already. I give this guy credit for trying to find what's wrong and believing it could be Crohn's, but just hate the non-stop testing :(

~ Lisa ~

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elye Community Regular
elye
Posted

Sorry, my mistake...confused you with someone else who's a fellow diabetic. Well, maybe that's a little light in your current darkness..at least there are no blood sugar issues! :)

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num1habsfan Rising Star
num1habsfan
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Posted
Sorry, my mistake...confused you with someone else who's a fellow diabetic. Well, maybe that's a little light in your current darkness..at least there are no blood sugar issues! :)

Yup very true!! But these 1 1/2 years of being undiagnosed is more than enough, these tests SUCK obviously but I don't want to say no in case my some chance they actualy find the answer to whats wrong and whats making me worse :huh:

~ Lisa ~

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elye Community Regular
elye
Posted

Lisa, I've got a question for you that I've wondered about: what's the difference between celiac sprue and refractory sprue?

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aikiducky Apprentice
aikiducky
Posted

Elye, refractory sprue is where a person with celiac for some reason or other doesn't heal while they are gluten free. With some people the villi just never grow back even though they are gluten free.

Lisa, I'm glad there weren't signs of refractory sprue! Also, it's good to hear that finally there's a doctor who takes it all seriously. I've been around here long enough to know how hard it has been for you. I wish you strength with all the testing!

Pauliina

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num1habsfan Rising Star
num1habsfan
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Posted
Lisa, I'm glad there weren't signs of refractory sprue! Also, it's good to hear that finally there's a doctor who takes it all seriously. I've been around here long enough to know how hard it has been for you. I wish you strength with all the testing!

Pauliina

Paulina, thanks for explaining what that is for me to Elye. It's one of those things that you know what it is and how it affects, but don't know how to put it into words really, eh??

Also thanks for your wishes, I can use all the strength possible, my friends have been amazing so far (the true ones anyways!). You people are all what keeps me going.

~ Lisa ~

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