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Typing Of Celiac?


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#1 a84c72

 
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Posted 06 October 2012 - 08:26 PM

By a fluke, I was diagnosed with Celiac Sprue after an endoscopy (that was for acid reflux and done during a colonoscopy). Biopsy showed some very unhappy villa in that small intestine.

I was directed to do the blood tests, as well, but every single one of those tests came back NEGATIVE. I've read about "false negatives" but didn't really quite understand why they can be. A followup visit to my gastro had him baffled, as well. He doesn't understand how I can have a positive biopsy but a negative blood test.

After the visit, I read that sometimes blood tests aren't as sensitive and stool tests are much more accurate.


ANYWAY......aside from that, apparently my biopsy came back consistent with TYPE B celiac.


I had no idea these things were TYPED. I tried to find out more about this, but only found one website that talked about it and it was WAY over my head (I think it was an actual medical website FOR medical professionals that would understand the jargon).

SO..I am wondering if anyone else knows about this typing and what it means? My doc only told me that from A to D and D is the worst.
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#2 GottaSki

 
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Posted 07 October 2012 - 06:37 AM

Welcome!

There are others on this board that were diagnosed by biopsy with negative blood work. My own blood work was only weakly positive with total villous atrophy after decades of undiagnosed Celiac Disease. More research is needed to understand the reasons behind the variety of antibody levels in the blood of those with Celiac Disease.

For Celiac Diagnosis, biopsies of the small intestine are typed by the Marsh Scale. If your doctor used the letter "B" - I think he meant Marsh Scale 3B - it is best to request a written or electronic copy of the endoscopy report along with all blood tests so that you know exactly what was found.

Here is a basic explanation of the Marsh Scale used to type Celiac Disease.

Stage 1, the cells on the surface of the intestinal lining (the epithelial cells) have more lymphocytes (white blood cells) among them than normal - Stage one is not specific to Celiac Disease.

Stage 2, the changes of Stage 1 are present (increased lymphocytes), and the crypts are larger than normal.

Stage 3, the changes of Stage 2 are present (increased lymphocytes and larger-than-normal crypts), and the villi are shrinking and flattening (atrophy). There are three levels of Stage 3:
3A--Partial villous atrophy
3B--Subtotal villous atrophy
3C--Total villous atrophy

Stage 4, the villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 a84c72

 
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Posted 07 October 2012 - 11:52 AM

WOW! I had no idea!


Thank you SO much for this information. Any idea how long it takes to get to each stage? I am trying to figure out how long I've had this issue. From what I know, nobody in my family has had this!


Thanks again!
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#4 mushroom

 
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Posted 07 October 2012 - 11:54 AM

No, the progression cannot be gauged by length of time you've had it, although obviously the longer you have had it the more advanced it is likely to be. :)
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#5 GottaSki

 
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Posted 07 October 2012 - 12:24 PM

Mushroom is right...there is no way to know how long you have had active Celiac Disease.

You may find that your acid reflux along with some minor aches, pains or digestive symptoms that were never enough to cause concern before disappear once you are gluten-free. My first indication of healing was my hair, nails and skin - my nails were brittle and peeled my entire life - again I had no idea this was not normal until I was about three months gluten free and realized I had healthy nails that weren't breaking as often and were no longer peeling. I had pretty great hair and skin before diagnosis, but both became much healthier once gluten was removed.

Now that you have been diagnosed, your siblings and children should be tested (blood) every 3-5 years - more frequently if symptoms occur. Acid Reflux was not a symptom for me, but was the only major symptom that one of my children had. There are over 300 symptoms, so it is important to rule out Celiac should your family have unresolved non-specific health concerns. Additionally, since you had all negative blood - I'd add endoscopy to look for "unhappy villi" (love that term) &/or trial elimination of all gluten to tests needed if your family has unresolved concerns.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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