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Happy I Found You

canadianjem

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canadianjem Rookie
canadianjem
Posted

I am so very happy that I found this Forum.

 

I am a 32 year old female who was diagnosed with Celiac in January.

I never ever had tummy problems. Actually I was living quite happily UNTIL i eliminated gluten.  Then all hell broke loose!! :0

 

My diagnosed started with an intestional biopsy that indicated severe villi atrophy.  Blood tests thereafter were negative.  However, DNA testing came back positive.  Specialist said that she will "call this celiac disease".

 

After eliminating all gluten I have had nothing but bad gas, tummy pain, pooping ( sorry...tmi) a bunch of times a day.  Now the very very worst part is my skin has started developing rashes that don't itch but burns like heck.  I cannot put anything on my skin.  not even sunscreen.

 

my doctors cannot figure anything out and have no answers.  They will not refer me to a specialist for Celiac.

 

Does anyone have any sort of information or advice that could possibly help me???

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kareng Grand Master
kareng
Posted

Just some things to consider:

 

"Is it possible to have a negative blood test, but a positive biopsy?

While rare, it is possible to have a negative blood test and still have celiac disease. tTG sensitivity is approximately 98%, which means that 2% of all celiacs may have a normal tTG level. Sometimes tTG antibodies are not produced enough to show up in the blood stream and can only be detected in the intestinal mucosa by special means.

IgA deficiency is a reason why you might have a negative blood test, but a positive biopsy.

Further medical evaluation is important for anyone still experiencing symptoms in order to establish the diagnosis or to rule out celiac disease as a part of establishing another diagnosis. In some cases, celiac disease is the wrong diagnosis as such conditions as Crohn’s Disease and food protein allergy Open Original Shared Link."

 
Open Original Shared Link
 
"What else can cause villus atrophy in the small intestine other than celiac disease?

There are many causes for villus atrophy, the most common being immune deficiencies, food allergies and Giardia infections. In addition, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar....."

 

Open Original Shared Link

cyclinglady Grand Master
cyclinglady
Posted

Which celiac blood tests? If my doc had not ordered the entire panel, I would not have had a diagnosis. Check to make sure you just did not get the standard screening test.

Here is the list:

-tTG IgA and tTG IgG

-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

(Source: NVSMOM -- )

Karen is relight that villi damage can be caused by many things!

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

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