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More Confused Than Ever! Help!

Lissa283

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Lissa283 Rookie
Lissa283
Posted

So my whole story started 6 months ago when I started getting large, pale, smelly loose stools everyday, serious fatigue, joint pain in my knuckles, headaches, a "haze", nausea, bloating.  I have had GI issues on and off since I was a teen (I'm 32 now).  I went to my PCP, then to an allergist, then to a rhuematologist, and then to a GI. My abnormal tests are as follow:

 

WBC - 2.5 and 3.2 (both low)....I had 3 our of 4 draws be low in a year period

Vit B12 - 350 (again low)

TTG 12.7 (normal is <6...6-8 is weak postive)

 

I recently had an endoscopy and colonoscopy which showed chronic gastritis and "reactive lymphoid aggregates" in my colon....celiac was negative.  I have read this finding could mean crohn's or ulcerative colitis, but I don't really meet any of the other diagnosing criteria for those inflammatory disorders.  

 

I haven't heard back from my doctor about what the next step with be....They did not check a whole celiac panal (only the ttg), but after my endo/colo, the doctor told my husband that I should start a gluten-free diet.  

 

What should I think of all this??

 

Please help!

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cyclinglady Grand Master
cyclinglady
Posted

Well, the TTG was positive. It was not a complete celiac blood panel, so you could ask for the complete one. You can tell your doctor that you would feel better taking a complete panel and chances are you would adhere to the gluten-free diet. Nothing might have shown on the biopies (about six is recommended) because not enough were taken or you are in the early stages of celiac disease. The intestinal wall is vast (like the size of a tennis court) so missing celiac damaged spots is easy. Get copies of all lab reports now!

Another suggestion is that if your doctor is willing to give you a diagnosis now, then go gluten free for six months and see how you feel.

I wish you luck and welcome to the forum.

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.

 

The tTG IgA is about 95% specific to celiac disease meaning that only 5% of (weak) positives are caused by something other than celiac disease (diabetes, thyroiditis, crohn's, colitis, liver disease, infection).  You have quite a few symptoms of celiac disease, and your ttG IgA is over double the normal upper limit, so you probably have celiac disease.

 

The endoscopic biopsy can miss up to 20% of celiacs, especially if less than 6 samples were taken.  It looks like you fall into the 1 in 5 celiacs of whom the biopsy misses.  Confusing, but it happens.

 

After going gluten-free like cycling lady said, get retested.  If your tTG IgA has gone down, and you have a negative DGP test, then it confirms celiac disease and a normalization of labs after going gluten-free.  Don't retest too soon though because some celiacs take close to a year for their labs to come down.

 

Hope you feel better soon.

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