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Blood Test Positive - Celiac Disease


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Old 05-13-2016, 04:49 PM   #1
lost.soul415
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Blood Test Positive - Celiac Disease

Hello everyone,

I recently had blood work done and it came back as positive for Celiac Disease. I am not really stressing about it because I heard there's a lot of false positive with blood work. I have an appointment next week with a GI Doctor.
I do have some concerns and was hoping if someone can help me out with some info.
I brought up some stomach concerns in the past to my doctor and he said it was IBS so I just brushed it off.
Now I am starting to notice when I defecate I am seeing some solid white stuff in my poo along with some slimmy stuff (sorry for grossing you out). There are times I have a lot of fresh blood that comes out after a bowel movement but I think it's just a tear so I am not worried about it.
I noticed after eating certain foods (mainly fast foods) I get headaches and every now and then I get migraines but more headaches than migraines.
My body is always so warm and lately my face has been red. In the past two years I have gained over 35lbs but the doctors say's it's because I am getting older since my thyroid test came bad negative.
There are other things but I don't think it's related. With the info I shared with you what do you think?
I will bring up this info to the GI Doctor next week and next time I see the white stuff in my poo I will take a photo of it and show the doc.

Last edited by lost.soul415; 05-13-2016 at 04:51 PM.

 
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Old 05-13-2016, 04:56 PM   #2
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Re: Blood Test Positive - Celiac Disease

Hello. Welcome to the boards.

It's really hard to say because there are so many different symptoms for Celiac. Not everyone has the same ones. For example, my symptoms are mostly fatigue and muscle weakness, and some nausea... depending.

How long have you been having these symptoms? I think seeing a GI is a great idea.

 
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Old 05-13-2016, 05:05 PM   #3
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Re: Blood Test Positive - Celiac Disease

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Originally Posted by SOE View Post
Hello. Welcome to the boards.

It's really hard to say because there are so many different symptoms for Celiac. Not everyone has the same ones. For example, my symptoms are mostly fatigue and muscle weakness, and some nausea... depending.

How long have you been having these symptoms? I think seeing a GI is a great idea.
Thanks for your reply,

I always had issues as a child with constipation and as I got older it was acid reflux and now, this.
But the white stuff in my poo and the slimy stuff has been going on for about a year along with the bleeding. I do always feel tired even after sleeping in all day but the doctor says it's probably depression or stress related. I hate talking to the doctors because they make me feel like a hypochondriac. I have concerns about my health so I escalate it before it gets worst.

 
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Old 05-13-2016, 05:09 PM   #4
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Re: Blood Test Positive - Celiac Disease

Quote:
Originally Posted by lost.soul415 View Post
Thanks for your reply,

I always had issues as a child with constipation and as I got older it was acid reflux and now, this.
But the white stuff in my poo and the slimy stuff has been going on for about a year along with the bleeding. I do always feel tired even after sleeping in all day but the doctor says it's probably depression or stress related. I hate talking to the doctors because they make me feel like a hypochondriac. I have concerns about my health so I escalate it before it gets worst.
I understand. You have to fight for your own healthcare and don't take the first opinion you hear. You are right to see a specialist. I hope this gets figured out for you and you feel better.

 
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Old 05-13-2016, 05:16 PM   #5
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Re: Blood Test Positive - Celiac Disease

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Originally Posted by SOE View Post
I understand. You have to fight for your own healthcare and don't take the first opinion you hear. You are right to see a specialist. I hope this gets figured out for you and you feel better.
Thank you very much!
I am actually scared to do a colonoscopy for the bleeding and a biopsy for the gluten test. I work in the medical field and sat though a colonoscopy case and I felt bad for the guy getting the exam. Those cameras are long lol.

 
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Old 05-13-2016, 05:20 PM   #6
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Re: Blood Test Positive - Celiac Disease

They can put you out for the colonoscopy. Even if they just use a "twilight" you will basically still be out -- so no worries for that.

I was put out -- and a friend of mine got the twilight -- and neither one of us remember a thing.

The hardest part is preparing for the colonoscopy. What I learned AFTER was that I could have asked for pills instead of drinking that nasty stuff that I could not keep down.

Ask for the pills.

Last edited by SOE; 05-13-2016 at 05:20 PM.

 
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Old 05-13-2016, 05:36 PM   #7
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Re: Blood Test Positive - Celiac Disease

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They can put you out for the colonoscopy. Even if they just use a "twilight" you will basically still be out -- so no worries for that.

I was put out -- and a friend of mine got the twilight -- and neither one of us remember a thing.

The hardest part is preparing for the colonoscopy. What I learned AFTER was that I could have asked for pills instead of drinking that nasty stuff that I could not keep down.

Ask for the pills.
Thank you for the recommendation, I will definitely ask for the pills.
The thing that scares is waking up during the procedure. My cousin had a colonoscopy done and he woke up right in the middle of it.
I spoke to a head nurses at one of my sites and she told me to make sure the anesthesiologist uses a drug called Propofol.
If you don't mind me asking, did you get a colonoscopy and biopsy? I believe the biopsy is done through the through the mouth? Did your test come back positive and if so how are you dealing with not being able to eat certain foods?

 
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Old 05-13-2016, 08:49 PM   #8
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Re: Blood Test Positive - Celiac Disease

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Originally Posted by lost.soul415 View Post
Thank you for the recommendation, I will definitely ask for the pills.
The thing that scares is waking up during the procedure. My cousin had a colonoscopy done and he woke up right in the middle of it.
I spoke to a head nurses at one of my sites and she told me to make sure the anesthesiologist uses a drug called Propofol.
If you don't mind me asking, did you get a colonoscopy and biopsy? I believe the biopsy is done through the through the mouth? Did your test come back positive and if so how are you dealing with not being able to eat certain foods?
I had the Propofol. Great stuff. That knocks you out. I had both done at the same time for "convenience." Ha. My Celiac was apparently triggered by mono (it can be triggered by a virus if you carry the gene), so it was too soon for the biopsy to find any damage. Also, those biopsies are hit or miss, because there is a lot of intestine and maybe they don't pull damaged pieces from the right spots. My point being that you can have a negative biopsy, but still have Celiac, or a problem with gluten.

As far as the food, it was not hard for me to stop in the beginning, because I was so tired of being sick. 4 years in, I have never cheated (because I don't want to get sick), but that's not to say I don't wish I could. I came close once to just going out and buying a croissant, but I looked up what kind of reaction to expect having gluten after having given it up for so long -- and that kind of scared me.

Yet I still miss the convenience of eating whatever I feel like and I really miss real pizza. And croissants.

But choosing between eating something that made me feel so awful, vs. giving it up was really a no-brainer.

 
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Old 05-13-2016, 11:46 PM   #9
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Re: Blood Test Positive - Celiac Disease

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Originally Posted by SOE View Post
I had the Propofol. Great stuff. That knocks you out. I had both done at the same time for "convenience." Ha. My Celiac was apparently triggered by mono (it can be triggered by a virus if you carry the gene), so it was too soon for the biopsy to find any damage. Also, those biopsies are hit or miss, because there is a lot of intestine and maybe they don't pull damaged pieces from the right spots. My point being that you can have a negative biopsy, but still have Celiac, or a problem with gluten.

As far as the food, it was not hard for me to stop in the beginning, because I was so tired of being sick. 4 years in, I have never cheated (because I don't want to get sick), but that's not to say I don't wish I could. I came close once to just going out and buying a croissant, but I looked up what kind of reaction to expect having gluten after having given it up for so long -- and that kind of scared me.

Yet I still miss the convenience of eating whatever I feel like and I really miss real pizza. And croissants.

But choosing between eating something that made me feel so awful, vs. giving it up was really a no-brainer.
Wow my friend you have definitely been through some stuff. I am glad you are feeling better and good job with the diet change. I know it can be challenging when you can't eat certain food when you go out and have a drink with your friends.

I honestly don't know how feeling normal feels like. I always feel down, tired and moody. I had several blood test done and they can't find anything so they call it depression or anxiety but I don't think it's that.

 
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Old 05-28-2016, 11:45 PM   #10
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Re: Blood Test Positive - Celiac Disease

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Originally Posted by lost.soul415 View Post
Wow my friend you have definitely been through some stuff. I am glad you are feeling better and good job with the diet change. I know it can be challenging when you can't eat certain food when you go out and have a drink with your friends.

I honestly don't know how feeling normal feels like. I always feel down, tired and moody. I had several blood test done and they can't find anything so they call it depression or anxiety but I don't think it's that.
Sorry I dropped off. For some reason my notification went into my spam folder so I didn't realize you replied.

How are you doing?

 
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