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Scheduled for biopsy...

tooth-whisperer

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tooth-whisperer Apprentice
tooth-whisperer
Posted

Well, I had my first appointment at the specialist's office on Christmas Eve, and am glad to say I had a really nice PA to sit down with me.  Finally, someone who is concerned about my symptoms and agrees that it sounds like more than "just reflux."  She ordered some lab work, some of which is still outstanding - so far the only result I have is a slightly low IgA (56, normal 60-350).  She didn't order the full panel, but she did go ahead and schedule me for biopsy on the basis of my symptoms, which was a big relief for me, so I didn't raise a fuss about the blood work.  The biopsy will be definitive, and I'll feel better having it done than relying on blood tests.  They're also going to take esophogeal samples to test for Eosinophilic Esophagitis.  As a final blessing, she scheduled my scope with a doctor who I've heard is very good, and who I also found out is celiac himself, and it's a passion for him.  The only bummer is I have to wait until the end of January, but it'll be worth it.  I just hope they find something, because I know something is going on, and the mental aspect to this is driving me crazy.

I had a rough couple of days symptom-wise over Christmas and the weekend.  I was having a hard time staying awake, dizzy and faint, and also my stomach felt like it was wound up like a rubber band (no pain, just a very unsettled feeling).  Thankfully I got some sound sleep lastnight, and lots of it, about 12 hours.  Sometimes I feel ok, and feel like I'm making this all up in my head, but then sometimes the problems flare up again... I just want answers!  I hope this is the final stretch.

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manitourose Newbie
manitourose
Posted

You're close to knowing, just remind yourself of that. It's hard to not get overwhelmed, let your mind wander and feel like the time is slowly ticking! I completely can relate. My endoscopy biopsy was the 16th and I have an appointment for my results on the 29th.

My only advice would be to be sure they cover their bases biopsy wise, celiac standards and the esophagus as you mentioned. Being that your doctor is a celiac as well I'm sure he is fairly attuned to this concern, but I'd remind him. If your biopsy comes back positive or even negative, it doesn't hurt to push for the full panel. Unless of course insurance doesn't cover it, than its understandable. It's nice to know a starting point with the blood work, especially if you are diagnosed with celiac.

The waiting is very stressful as is waiting for the darn results! ;-) Hang in there, the knowledge of what direction to take to get you to feeling better is near! Keep updating. 

CherylS Apprentice
CherylS
Posted

So glad you are getting a biopsy.  It sounds like it will be worth the wait.

nvsmom Community Regular
nvsmom
Posted

Double check which celiac tests were done.  Because you are IgA deficient (5% of celiacs are) all of your IgA based celiac tests (tTG IgA etc) will probably be negative even if you are a celiac.  The tests you need are the tTG IgG, DGP IgG, EMA IgG and maybe the older AGA IgG.

Good luck!

Gemini Experienced
Gemini
Posted
2 hours ago, nvsmom said:

Double check which celiac tests were done.  Because you are IgA deficient (5% of celiacs are) all of your IgA based celiac tests (tTG IgA etc) will probably be negative even if you are a celiac.  The tests you need are the tTG IgG, DGP IgG, EMA IgG and maybe the older AGA IgG.

Good luck!

I recently read that your Total IgA would have to be close to zero to be considered IgA deficient enough to skew test results but I am not sure I believe that.  The lower the number outside the normal range would make it seem far less likely to get accurate results.  I think this is why it is so important to do gene testing also.  That is so basic these days and there are no gluten challenges needed.

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