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Newbie with questions

Drabbyp
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Drabbyp Newbie
Drabbyp
Posted

I don't know a ton about celiac (so as I type you'll realize this)but multiple doctors have been suspicious for a few years.  Here is what I know.  I had a colonscopy 2 years ago because I'd had a bowel obstruction.  Prior to my colonoscopy I'd been gluten free for about 3 months.  They got me in pretty quickly (never had a consult, my primary just ordered the colonoscopy) and looking back only had gluten back in my diet less than 2 weeks prior.  I recently met with a gastro who re-looked at the results and said that all my villi were all still there, but he said that there was definitely some inflammation or abnormalities surrounding them.  He wondered if maybe knowing my history now if it was because I'd been gluten free prior). 

 

Here's what I've had: Immunoglobulin A was 271, so in range.  Tissue Transglutaminase/AB, IGA was negative, and most recently they did the HLA/ DQ2/DQB and my results were DQ2 Heterozygous.  I've dealt with diarrhea, constipation, bloating, fatigue, joint pain (could be PA)  I have psoriasis, psoriatic arthritis, exzema and a skin biopsy done a few years ago confirmed issues with Dermatitis Herpetiformis.  This has all gone on for years. 

 

I'm initially finding this site a little overwhelming and not easy to navigate, so thought I'd ask to get some help.  I appreciate any thoughts you might have.  Thanks!

 

Can anyone give a little feedback

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kareng Grand Master
kareng
Posted
  On 6/28/2018 at 6:13 PM, Drabbyp said:

I don't know a ton about celiac (so as I type you'll realize this)but multiple doctors have been suspicious for a few years.  Here is what I know.  I had a colonscopy 2 years ago because I'd had a bowel obstruction.  Prior to my colonoscopy I'd been gluten free for about 3 months.  They got me in pretty quickly (never had a consult, my primary just ordered the colonoscopy) and looking back only had gluten back in my diet less than 2 weeks prior.  I recently met with a gastro who re-looked at the results and said that all my villi were all still there, but he said that there was definitely some inflammation or abnormalities surrounding them.  He wondered if maybe knowing my history now if it was because I'd been gluten free prior). 

 

Here's what I've had: Immunoglobulin A was 271, so in range.  Tissue Transglutaminase/AB, IGA was negative, and most recently they did the HLA/ DQ2/DQB and my results were DQ2 Heterozygous.  I've dealt with diarrhea, constipation, bloating, fatigue, joint pain (could be PA)  I have psoriasis, psoriatic arthritis, exzema and a skin biopsy done a few years ago confirmed issues with Dermatitis Herpetiformis.  This has all gone on for years. 

 

I'm initially finding this site a little overwhelming and not easy to navigate, so thought I'd ask to get some help.  I appreciate any thoughts you might have.  Thanks!

 

Can anyone give a little feedback

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Were you gluten free when you had the blood work?

Drabbyp Newbie
Drabbyp
Posted
  • Author

No

GFinDC Veteran
GFinDC
Posted
(edited)

Hi Drabbyp,

Were you positive on the DH testing?  If you have DH, you have celiac disease, no other testing is needed to confirm it.  Only people with celiac disease can get DH.  DH is a condition where IgA anti-gliaden antibodies are deposited in the skin.  It is often very itchy and appears in a symmetrical pattern on both sides of the body.  Like both elbows, or both butt cheeks, both knees etc.

Edited by GFinDC
kareng Grand Master
kareng
Posted
(edited)

Like GFin DC said, if you are diagnosed with DH , then you have a Celiac diagnosis.  People with DH sometimes don't have the elevated blood tests but will still have intestinal damage.  That damage is usually not seen during a colonoscopy.  They do an endoscopy (looks at small intestine) and biopsy it.  But if you were gluten-free at that time, it should be mostly healed.  

 

So the big issue here is that you have been diagnosed with Celiac , yet you are not eating gluten free.  

 

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"Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. Unless otherwise specified, the information pertaining to celiac disease also pertains to people with DH. In addition to following a strict gluten free diet, DH is also commonly treated with a medication called Dapsone"

Edited by kareng

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