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Do I have celiac disease

Jennie-Lee

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Jennie-Lee Newbie
Jennie-Lee
Posted

My family doctor had me do a blood test and stool sample. I was told I tested positive for celiac disease. 

My doctor sent a referral to a gut specialist who immediately sent a note back stating he did not think I have celiac disease. Now because I am not considered urgent I could wait a year for a biopsy.

I get bloated to the point I look pregnant, I have missed my period, it took me 3 years to conceive my son and had to take fertility drugs, I am always tired, always feel sick, get cramps, feel nauses, have to unbutton my pants at work after eating because I am so uncomfortable. I do have some good days. I have been sick my entire life and have always been underweight. What do I do? Signs point to celiac but how do I confirm it without a biopsy? I cannot go on like this for another year. Would really appreciate any insight. Thank you.

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TexasJen Collaborator
TexasJen
Posted

Hi Jennie-

I'm sorry you feel so miserable.  Do you have a copy of the labs results?  That might help shed some light on how best to make your plea to the GI to get you in sooner. 

Regardless of whether you have celiac or not, it sounds like something is going on. 

There are several steps you could take depending on the results. 

1. Labs are really negative- work with PCP on other possible diagnoses, keep a food diary and symptoms diary and try to pin it down yourself, go on a gluten free diet and see if that helps your symptoms (but if it helps, you will have to do a gluten challenge in the future and sometimes the reactions after being gluten-free are more severe)

2. Labs are really positive and the GI was wrong - send a letter to the GI doc and he sees his mistake and makes you an appt next week or go gluten free until 2 weeks before your appointment, then start a gluten challenge until your scope.

Good luck!

 

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Victoria1234 Experienced
Victoria1234
Posted

There is no official stool test for celiac that a doctor would order. What kind of doctor did this?

Please post your celiac blood test panel for us to see so we can help.

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