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On The Way To A Diagnosis

Ace2011

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Ace2011 Newbie
Ace2011
Posted

After dealing with horrible stomach issues, anemia, joint pain, arthritis, and migraines for years I finally went to a doctor today. I've also been dealing with weight issues. I'm down to barely 90 pounds (I've lost over 20lbs in the past year) and I'm continuing to drop weight because of my stomach issues. As soon as I talked to my PCP and laid out all of my issues he immediately thought of Celiac and made the phone calls for the referrals. I have an appointment with a GI tomorrow where they will do blood work for Celiac and we will schedule an EGD and colonoscopy. I know that doing the tests will not solve anything immediately but I feel so much relief just knowing that people believe me. I'm only 22 and I've been dealing with all of this since I was 10. I finally made the appointment because I realized how much it was interfering with my life and how much I was missing of seeing my son as a result of being sick so often. 

 

Having said that, what can I expect during my GI appointment and the tests? Is there anything that I should know going into that appointment tomorrow? 

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GottaSki Mentor
GottaSki
Posted

Welcome Ace!

Wow that is quick to get the referral to GI. There really isn't much that will happen until you have had a complete celiac antibody panel along with possible nutrient testing, but good to get evaluated.

It is encouraging to read that your primary immediately thought celiac disease...hopefully this will become the norm for many more doctors in the foreseeable future :)

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nvsmom Community Regular
nvsmom
Posted

I was going to add the tests to ask for but I see I'm too late.  :) I hope the appointment went well.

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Georgia-guy Enthusiast
Georgia-guy
Posted

Welcome Ace! What did the GI say today? You are VERY lucky to have a doctor who is aware of celiac! I have been fighting to get my doctor to just run the tests then bill the insurance without pre-approval because I am requesting the tests, not them ordering the tests. I am like you though, I've been dealing with issues as far back as I can remember, but I've been fighting for an answer since I've been out on my own (my parents thought I was seeking attention and faking). I'm 25 now and have ruled out about 20 different things (SLE, Crohns, and IBS being the top 3 suspects doctors keep saying until I show them negative tests).

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Ace2011 Newbie
Ace2011
  • Author
Posted

The GI appointment went well. I found out that I've already lost 20% of my weight in less than a year (I'm down to 80ish lbs right now) so he is pretty worried about my overall health right now. He is holding off on an EGD but he is scheduling a CT and colonoscopy for me. They did a ton of blood work this afternoon though. I'll list what the lab order says at the bottom. I was told that I should get a phone call on Friday if anything is abnormal with the blood work. He is thinking either Celiac or Crohn's based on my symptoms and the fact that I already have arthritis and anemia. 

I'm so, so thankful that they are taking it seriously. I've had so many people, my parents included, just brush my stomach pain off and never do anything about it. Growing up I just assumed it was normal because no one ever seemed concerned. My husband is the one that finally pushed me to make the phone call last week because this is definitely not normal. 

Lab tests: 
CBC
CMP

TSH

TtG IgA - TTGABA

IgA Total

CRP

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kareng Grand Master
kareng
Posted

The GI appointment went well. I found out that I've already lost 20% of my weight in less than a year (I'm down to 80ish lbs right now) so he is pretty worried about my overall health right now. He is holding off on an EGD but he is scheduling a CT and colonoscopy for me. They did a ton of blood work this afternoon though. I'll list what the lab order says at the bottom. I was told that I should get a phone call on Friday if anything is abnormal with the blood work. He is thinking either Celiac or Crohn's based on my symptoms and the fact that I already have arthritis and anemia. 

I'm so, so thankful that they are taking it seriously. I've had so many people, my parents included, just brush my stomach pain off and never do anything about it. Growing up I just assumed it was normal because no one ever seemed concerned. My husband is the one that finally pushed me to make the phone call last week because this is definitely not normal. 

Lab tests: 

CBC

CMP

TSH

TtG IgA - TTGABA

IgA Total

CRP

It's super easy to do the endoscopy at the same time as the colonoscopy. I would insist on it.

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GottaSki Mentor
GottaSki
Posted

It's super easy to do the endoscopy at the same time as the colonoscopy. I would insist on it.

 

I agree!

 

Get the endo at the same time as the colonoscopy -- there is no prep for an endo and you will already be on the table sedated.

 

Not to mention it saves the frustrating wait between procedures should the colonoscopy come back clear.

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Ace2011 Newbie
Ace2011
  • Author
Posted

I spoke with the nurse when they called to schedule the colonoscopy. They won't do the endo untill/unless the blood work and colonoscopy show a need for it. The colonoscopy is scheduled for the 17th so it will be a bit of a wait before I begin to get answers. I should get the blood work results next week so hopefully it shows something that they can explore further.

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elless Rookie
elless
Posted

My blood tests look very similar to your list.  Its strange that they won't run both the endoscopy and colonoscopy.  My GI scheduled them both.  However my insurance company won't let me do them both the same day.  I cringed a little bit looking at the prep work for the colonoscopy. Lol.  Good luck by the way. 

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GottaSki Mentor
GottaSki
Posted

I had to push my insurance to allow them together and the our copayment was based on both individual procedures...no credit was given for time and materials saved doing it at the same time.....but at least it saved me an extra sedation...I don't do well with sedation :(

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Georgia-guy Enthusiast
Georgia-guy
Posted

All I can say about a endoscopy/colonoscopy is I now know that if I get one done, I don't need drugs to sedate me...I can just eat a nice full meal of pasta (sad face), bread, tortillas (sad face), and pretty much anything made straight from wheat and I will be out in a short time. (It's weird cuz stuff with gluten in it, like twizzlers or soy sauce, have a separate list of symptoms.)

But I have had an upper endoscopy done before, and I do recall that it was important to listen to the post-procedure instructions...like don't eat for so long, and no soda for so long. You also don't want to have anything on the schedule for the rest of the day. Go home and relax!

(Side note for anyone who isn't aware, I am not Dx yet, working on getting that done so I still have to eat gluten)

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