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Help, having a nightmare!

Poolb001

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Poolb001 Newbie
Poolb001
Posted

Hi, 

i have got several questions to ask...

first of all here is my long story! 

I have been having a lot of symptoms which I believe sound a lot like celiac disease after reading hundreds of forums! I've had these symptoms for about a year but they have worsened in the last 5 months. These include: severe tiredness/fatigue, severe bloating to the point where I look 7 months pregnant even first thing in the morning, excessive gas in the evening and night which smells really bad, feeling like I need to burp at night, feeling sick at night, frequent stools sometimes 5 times a day, soft stools sometime with blood or undigested food, dark circles under my eyes, rash around nose, constantly hungry, mild anxiety. 

I went to the doctors with these symptoms and she ordered 15 different test along with celiac tests. She initially said it sounded like Ibs, but after my research I know that doctors use this as an escape route! So after I had my blood tests done, o decided to go gluten free for a bit just to see how I felt. However I know that you have to be eating gluten if you had to have a biopsy done, I knew it would be a long time before I would have that done which is why I embarked on the gluten free. As soon as I stopped eating gluten my symptoms improved 95% apart from te bloating but I understand that if you have celiac this could take time to go down. 

So eventually my blood tests came back, everything was normal apart from I had low vitamin D and high esr which indicates inflammation in the body, however my celiac results had not returned. I was informed these tests take longer and would be another 2 weeks. A month passed and no results. Rang the hospital and for some annoying reason they didn't do the celiac test and had disposed of my blood. This means I have to have it done again! Meanwhile I've gone gluten free and I know that for accurate results you must be eating gluten! I stopped eating gluten for 2/3 weeks. I started eating it again 2 weeks ago. 

My questions are... 

1) do my symptoms sound like celiac?

2) how long should I eat gluten for again before getting another test baring in mind I didn't eat gluten for 3 weeks? 

 

Would appreciate anyone's help! Just want to know what is wrong with me! 

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SLLRunner Enthusiast
SLLRunner
Posted

Welcome!

Yes, I think your symptoms sounds like celiac disease.

The University of Chicago recommends a Open Original Shared Link

frieze Community Regular
frieze
Posted

make sure the testing has not been sent out.  otherwise, some better be picking up the tab for your repeat....

Poolb001 Newbie
Poolb001
Posted
  • Author

Thankyou. When I rang the hospital they told me it hadn't been requested even though it was on my blood test form! :( 

frieze Community Regular
frieze
Posted
  • lying to CYA??

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