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12-29-2017, 03:11 PM   #1
LeslieC28
 
Join Date: Dec 2017

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Am I Crazy?

Am I crazy? That is a question I find myself asking alot these days! I am 32 and in seemingly good health if you simply look at me, but if you knew me you'd see a different picture. I have always had bowel issues since I was a baby I either have diarrhea or spend a week or so with out a bm and have to take something to go but recently [the last year] I have started having major stomach issues! I have days that I feel like my body is surrounded by quick sand and everything I do is a struggle. I have a hard time eating to the point of every time I eat now I either have diarrhea or throw up. I have blood in my stool and at times I simply want to cry because my doctor makes me feel insane. I had a positive ana panel and my calcium and vitimin d are very low my dr has me taking 50,000 ui vitimin d a week right now. I go today for a CT scan and pray something turns up. I have changed my diet and it helped some at first [I have cut all gluten out of my diet] I have a half sister with celiac's. This change helped for a while now it's back to me not being able to eat without getting sick. My body just feels so tired and not being able to eat isn't helping. when your tests don't show anything glaringly it has made me wonder if I'm nuts. I spent the day at the er 2 days ago bc the pain in my stomach was so bad. My question to everyone else is did you have a long road to figuring out what was wrong? Did you feel crazy? What foods do you eat? [I haven't found anything yet that doesn't make me sick] thank you for reading and I guess letting me vent I just want to find out what is wrong and start to get better!
12-29-2017, 05:09 PM   #2
Jabee
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Location: Massachusetts

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Getting a proper diagnosis often takes a long time. At one point I think the average amount of time from onset of symptoms to diagnosis for celiac disease was ten years. It can be hard to diagnose intestinal problems because itís hard to see the entire GI tract. Do you have a good GI? Does anything help with the pain? Have you had any scopes done? Iím really sorry youíre feeling so awful. Do your doctors know how sick you feel? There are lots of other tests in addition to CT scans and it often takes a whole bunch of imaging to figure things out. Youíre not alone. There is an undiagnosed support forum on here you can check out that might help. I hope the CT given you some helpful information.
12-29-2017, 05:45 PM   #3
my little penguin
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Join Date: Apr 2012

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Yeah that ^^^^
It takes a very long time
Since GI issues over lap
If you pulled gluten then they really canít tell on a scope if celiac is the issue so bceyoyr kit eating it
Gastroparesis (delayed gastric emptying ) can be an issue
Allergic colitis (eosinophilia Gastrointestinal disorders -egids
And the list goes on and on
Gettingbthe right tests is the tricky part

Woth a positive Ana have you seen a rheumatologist
Sometimes sibclinical GI issues go with Rheumatological diseases

Good luck
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12-29-2017, 06:20 PM   #4
LeslieC28
 
Join Date: Dec 2017

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Yeah that ^^^^
It takes a very long time
Since GI issues over lap
If you pulled gluten then they really canít tell on a scope if celiac is the issue so bceyoyr kit eating it
Gastroparesis (delayed gastric emptying ) can be an issue
Allergic colitis (eosinophilia Gastrointestinal disorders -egids
And the list goes on and on
Gettingbthe right tests is the tricky part

Woth a positive Ana have you seen a rheumatologist
Sometimes sibclinical GI issues go with Rheumatological diseases

Good luck
I got the result this week but to get in with a Rheumatologist the one in my area that takes my insurance says they can't get me in until the middle of the upcoming year... this seems a bit long to me but I guess part of that is me just wanting to find out what is going on with me. I'm going to try and call myself instead of the referral person at my dr office and see if I can get in sooner!
12-29-2017, 06:23 PM   #5
my little penguin
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Join Date: Apr 2012

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You may have to travel for a rheumatologist
A lot of places in the Us may only have one per state
Others have more

For kiddie rheumo parents drive 4-5 hours at times
So might be worth looking further out
12-29-2017, 06:28 PM   #6
LeslieC28
 
Join Date: Dec 2017

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Getting a proper diagnosis often takes a long time. At one point I think the average amount of time from onset of symptoms to diagnosis for celiac disease was ten years. It can be hard to diagnose intestinal problems because itís hard to see the entire GI tract. Do you have a good GI? Does anything help with the pain? Have you had any scopes done? Iím really sorry youíre feeling so awful. Do your doctors know how sick you feel? There are lots of other tests in addition to CT scans and it often takes a whole bunch of imaging to figure things out. Youíre not alone. There is an undiagnosed support forum on here you can check out that might help. I hope the CT given you some helpful information.
Thank you my doctor is wonderful and I think after today she really understands how I'm feeling. I didn't mean to but when I was there today before I made my post here I started crying when I was talking to her about what's going on. My bf lives out of town and was in for Christmas and 2 out of the 5 days he was here I was so spent and sick all we did was stay home because I couldn't be too far from the bathroom! He is great and didn't mind just relaxing and watching movies but I hate being the reason we can't do things!

I have an appointment with a GI dr in 2 weeks so I am really hoping between that and my CT results to find something. I haven't had a scope yet either. I am from a smaller town and my previous family dr said I had the stomach flu [for 2 weeks] so luckily I have my new dr and she is really working with me on trying to find out what is causing everything. I also started doing a health journal everyday and not to sound gross but I've even started taking pictures of things that just seem really wrong or when I seem to have way more blood when I go ect hoping it will help. I feel stupid at times like maybe I'm just not explaining things good enough or I'm not asking the right questions.
12-29-2017, 06:55 PM   #7
Jabee
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Join Date: Oct 2016
Location: Massachusetts

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A health journal is a great idea. Iíve been keeping one since my last hospitalization to keep track of whatís going on. That way when I meet with my GI I actually have a better idea of my symptoms. We can get accustomed to not feeling well that we can forget to mention things or ask about things that turn out to be important. Iím glad your new doctor is helpful and that youíll be seeing a GI soon.
12-30-2017, 07:56 AM   #8
LeslieC28
 
Join Date: Dec 2017

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You may have to travel for a rheumatologist
A lot of places in the Us may only have one per state
Others have more

For kiddie rheumo parents drive 4-5 hours at times
So might be worth looking further out
I wouldn't mind to drive juat have to find the right person a friend of mine recommended using health grades to look for someone. Is there somewhere you or anyone else suggests to find reviews and such for drs?
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