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New to this disease....

Heather7

By Heather7
in Board/Forum Technical Help

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Heather7 Newbie
Heather7
Posted

I'm sure there are a million posts like this every day.  I'm about 40 and female and I have had stomach issues all my life.  My PCP did a blood test a few years back, but it came back negative.  So I kept eating what I wanted.  But I have always had weird symptoms--like shakiness and stomach pain and rapid voidance alternating with constipation.  I've also had weird weakness episodes, where I almost passed out, but I'm overweight, not underweight, so they never suspected Celiac.  I went to see an allergist/immunologist who had a genetic test done on me and it came up that I have 3 of 4 of the genetic markers for Celiac disease.  They want me to have an upper endoscopy, but I hate medical procedures.  I know it will probably be for the best--but I also have tachycardia and I'm scared to have them scope me.  

I decided to go ahead and go on a gluten free diet.   (I know this probably isn't a good idea--because they need to see if my stomach is damaged.)  I will say I have overall felt better on this diet, but I get weak on it too--I've only been on it for about 4 days now.  I eat things like rice and potatoes and fruits etc... but I'm also having intermittent regular movements, with diarrhea.  I will say my severe stomach pain has stopped, I just wish I could get my lower intestine and colon to follow suit.  I'm thinking it may just take time for my body to adjust and heal--if it will even heal.  And yes, this is terribly gross, but I don't know what to expect eating gluten free.  I don't know what to look for body-wise, and I'm wondering about this "leaky gut" syndrome I keep hearing about.  

Also, the same side of my family on which we have Celiac we have Multiple Sclerosis and Type I diabetes.  I'm wondering if all auto-immune diseases are linked and if other sufferers of Celiac have other auto-immune issues.  I have type II diabetes myself.

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cyclinglady Grand Master
cyclinglady
Posted

Celiac disease can develop at any time.  My kid gets tested every two years evn if she is symptom free.  I would strongly consider getting tested and insisting on the complete celiac panel.  

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 

My family is riddled with AI diseases too.    Yes, there is a strong link between many AI diseases, especially T1 diabetes and thyroiditis.  

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      By Scott Adams · Posted

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