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JodyM75

Dxed Celiac By Biopsy, Should I Bother With Bloodwork?

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I have a 20+ year history of reflux due to a hiatal hernia, and I was recently diagnosed with gastroparesis (delayed stomach emptying).  Both are also symtoms of Celiac, so, before my EGD two weeks ago, I asked the doc to do a test for Celiac.  He wavered and caved in, and I'm glad I asked becuase the test came back positive.

 

I've never had bloodwork or any other tests for Celiac.  At this point, should I bother?  I have an appointment with my regular doc tomorrow, and I'm wondering if I should request any other tests.

 

Thanks,

 

Jody

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I would ask for the blood panel provided you are still consuming gluten. Villi can be damaged from other things (like milk) per the University of Chicago's celiac website. Research, print and hand it over to your doctor. I would hate to have to give up gluten for life if it was not causing damage.

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I think the blood work would be good for follow up purposes. You need to get it checked after about 6 months gluten-free & then every year. It may not be negative after 6 months , but you could see it going down and know you are on the right track.

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I did not know other things can cause villous atrophy.  I will discuss this tomorrow with my PCP and request bloodwork.  I started with the gluten-free bit yesterday.

 

Unlike many people on these boards, my symtpoms are not severe and, frankly, I don't know yet what symptoms this is actually causing.  If it is Celiac, I'm guessing my symptoms would become evident when I took it out of my diet and they disappeared.

 

The GI doctor said I tested positive for "mild celiac" and after researching it I take that to mean the villous damage was mild because you either have Celiac or you don't.  He wanted me to go on a gluten-free diet.  I've been researching like crazy since then! 

 

Jody

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I agree with Karen. Get the blood work so you know where your levels are now and they can be monitored. It's nice to see them come down after 3 and 6 months on the diet. Then for future blood work as well. I would also request that they check you for any vitamin deficiencies. Happens often with celiac disease and you may need to supplement with vitamins. Iron levels, Vitamin D, B-12, etc. Have them check so you know! Update us when you can!

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Thanks for all the input, I will push for the bloodwork when I see the doc today.  I was checked for vitamin deficiencies about 6 months ago and the only one was Vit D, everything else was normal.  I've been on PPIs for 15 years and read that they can cause deficiencies as well, but to my surprise all was pretty normal. 

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I have the bloodwork form and she also is requesting a food allergy panel.  I got the impression she didn't think the bloodwork was necessary if I got diagnosed by biopsy.  I'm feeling very unsure and a bit confused right now.  I really dislike trying to navigate through modern medicine....

 

What if the bloodwork doesn't match the biopsy results?  (See, the "What if"s are starting already...)

 

If the villi is being damaged by something else, how will I narrow that down? 

 

Does Celiac damage all the intestine or just the small intestine?

 

Jody

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I did not know other things can cause villous atrophy.  I will discuss this tomorrow with my PCP and request bloodwork.  I started with the gluten-free bit yesterday.

 

Unlike many people on these boards, my symtpoms are not severe and, frankly, I don't know yet what symptoms this is actually causing.  If it is Celiac, I'm guessing my symptoms would become evident when I took it out of my diet and they disappeared.

 

The GI doctor said I tested positive for "mild celiac" and after researching it I take that to mean the villous damage was mild because you either have Celiac or you don't.  He wanted me to go on a gluten-free diet.  I've been researching like crazy since then! 

 

Jody

I was "mildly" positive o my blood test but my biopsy via endoscopy revealed Marsh Stage IIIB, which is severe damage! My only symptom was anemia and since I had two anemias (one iron deficient and the other genetic) the iron deficiency anemia was attributed to men's traction. Stopped that and the doc noticed that I was still anemic. It has been a year since my dx, but I can be scoped to see if I my villi have improved. I am glad I had the biopsy.

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I have the bloodwork form and she also is requesting a food allergy panel.  I got the impression she didn't think the bloodwork was necessary if I got diagnosed by biopsy.  I'm feeling very unsure and a bit confused right now.  I really dislike trying to navigate through modern medicine....

 

What if the bloodwork doesn't match the biopsy results?  (See, the "What if"s are starting already...)

 

If the villi is being damaged by something else, how will I narrow that down? 

 

Does Celiac damage all the intestine or just the small intestine?

 

Jody

It damages just the small and things like milk can damage villi, but focus on one thing at a time. Mine did not match. My biopsy showed much more severe damage.

Scour the University of Chicago website for complete and accurate information about celiac disease.

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