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New to site...having suspicious symptoms..HELP!

clutchlee

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clutchlee Rookie
clutchlee
Posted

Have had long standing fatigue and occasional headaches, and insomnia.  More recently, after starting to digest meals, I have a burning sensation of mouth, lips, and throat.  Blurry vision comes along as the burning mouth occurs.  Some abdominal gas and soft stools.  Feel pretty "lousy" all day as this is happening.  Primary docs don't have a clue.  Routine labs normal.

Anyone...can you share what you think, make recommendations for testing, have similar experiences?

Thanks so much for anything.....I'm getting desperate.

clutchlee

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GFinDC Veteran
GFinDC
Posted

Hi clutchlee,

The burning sensation could be GERD (acid reflux) or esonopilic esophagitis, or maybe gastritis.  All of those can be related to celiac disease symptoms also.  Fatigue is a common problem with celiac as it impairs the gut's ability to absorb nutrients

You can ask for a celiac blood test to be done.  You should keep eating at least some gluten every day until all the testing is done though.  The usual testing is blood tests for immune system antibodies to gliaden a protein in wheat.  Then an endoscopy to check for celiac type damage to the villi lining of the small intestine.  They should take 4 to 6 biopsy samples for review.

There are some getting started tips in the Newbie 101 thread in the Coping With subsection.

Welcome to the forum! :)

cyclinglady Grand Master
cyclinglady
Posted

I will just add a link to the University of Chicago's celiac website which is, in my opinion, one of the better sites for explaining all things celiac:

Open Original Shared Link

I hope you find relief soon!  

Lochella Newbie
Lochella
Posted

I was told my levels were high at 250, is that super high??

Lo

Jmg Mentor
Jmg
Posted
5 hours ago, Lochella said:

I was told my levels were high at 250, is that super high??

Lo

Hi lo and welcome?

You may be better off starting a new topic and including any further info you have. For example, a test result will usually come with range info, this shows what the normal range is and helps you work out what your score means. It should also say which marker is being tested...

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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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