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New To This -- Biopsy Necessary?

joannw

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joannw Newbie
joannw
Posted

Good morning, everyone! 

 

I was diagnosed with celiac via positive blood test back in February as part of a battery of tests to determine why I had no Vitamin D in my system.  I immediately started a gluten free life and feel wonderful.  I don't find it too restrictive, and can imagine eating this way for the rest of my life.

 

I am scheduled to see a gastroenterologist next week.  He will want to do the whole endoscopy/biopsy thing, I am sure -- which I think will involve going back on gluten.  I am unwilling to do that.  Since I am already looking at parathyroid and thyroid surgery in the near future, I don't even want to undergo the endoscopic procedure unless there is a real advantage to having the "official" confirmed diagnosis.  Any comment?

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Gemini Experienced
Gemini
Posted

Welcome Joann.....if you had positive blood work and feel that much better on the gluten-free diet, there is not need to go further unless you want to.

Positive blood work is a diagnosis, especially if you did the dietary trial and had major improvements. I did the same thing because I was too sick at diagnosis to even fathom the biopsy procedure. I have been gluten-free for 9 years and have had no major setbacks at all so have never been scoped. It is not always necessary. I would advise checking your antibody numbers with blood work to make sure they are coming into the normal range and stay that way but I can totally understand not wanting to go back to eating gluten just to please some GI doctor who didn't even diagnose you. Your thyroid/parathyroid problems could easily have stemmed from having Celiac Disease and as someone who has thyroid disease myself, no way would I eat gluten to please anyone.

Why are you seeing a GI doctor anyway? I do not have a GI doc and just go through my PCP for any relevant testing needed, such as repeat blood work. You could always do the same, if you have a PCP that you like and work with well.

Good luck with your surgery and congratulations on finding the root cause of your problems. You are going to feel even better as time goes on!

Waitingindreams Enthusiast
Waitingindreams
Posted

Thanks for your feedback, Gemini! You helped me too!

 

I don't know why she is going to see a GI, I personally am going to start seeing one because, when I asked, my doctor refused to re-test my blood levels repeatedly. He basically laughed it off, like I was over-reacting. I would feel more comfortable seeing someone who specializes in celiac disease. He's a good doctor in general, but he just isn't qualified to deal with everything celiac related, clearly.

 

Looks like we're okay, Joannw! :)

joannw Newbie
joannw
Posted
  • Author

Thanks Gemini and Waitingindreams!  The endocrinologist who ordered the blood test that indicated celiac referred me to a gastroenterologist and at her urging, I made the appointment -- then I started to question why.  He can't do anything to cure it, after all, and I am not a fan of invasive procedures just to dot all the i's in my medical history.  I haven't seen him yet.  My PCP will order the blood tests again, I am pretty sure -- she's very accommodating.  The tests were for Gliadin IgA 199 (normal is <20) and Tissue Transglutaminase IgA 176 (normal is <20) -- so, pretty clear-cut!

 

Reassuring to know that this step isn't necessary!

Gemini Experienced
Gemini
Posted

Joann......you have been gluten-free since February? You could have your doctor re-run the blood work but if you have been doing the diet correctly, the numbers should be lower than at diagnosis because you've been eating gluten-free. They may not drop a lot or they might.....everyone is different in how they respond to the diet. But if you are looking to re-run them to bolster your diagnosis, you need to start eating gluten again and I don't recommend that if you are having surgery in the near future. Your numbers were pretty solid so I would not doubt them.

The Gliadin IgA test is the one for reaction to gluten and the tTg is for intestinal damage. The tTg number does not necessarily correlate to more damage as some people have higher numbers with lesser damage and others have lower numbers with a lot of damage. My tTg was over 200 and I was extremely sick and malnourished but have healed nicely and gained weight so don't worry about that. If, down the road, you are having problems, you can always opt for the endo to see what's going on. I feel the same way as you......not a fan of invasive testing and so far, I haven't needed to.

Waitingindreams........sounds like you definitely needed a new doctor! The blood work needs to be re-done more often in the beginning and usually once a year after healing so if a doctor refuses to do so, ditch them and find someone good! Glad to hear I helped you!

joannw Newbie
joannw
Posted
  • Author

Thanks for explaining those numbers, Gemini.  I thought I had no symptoms until I went gluten free -- then realized that my joints stopped aching, my skin improved, my color was better . . . and there was peace in my middle!  I have only had gluten once since February (at an Indian restaurant -- so much is gluten free there that I got careless).  I am not anxious to repeat that!  I will ask my PCP to include an order for those two tests the next time I have routine blood work -- sounds like a much better way to go than a scope-and-biopsy!  You are confirming my own thoughts about this and that is so helpful to me right now!  Thank you!

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