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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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      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
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      Awaiting dermatitis herpetiformis confirmation following biopsy

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    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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