Just want to cry.......

[alfenner]

Sorry to be such a downer on my first post, but I'm just at the bottom this evening.

Here's the scoop:

- 2016 has been yucky physically, and I finally said enough, we're going to get to the bottom of what's going on.

- symptoms presented as hypothyroid, so that's the route we went first, although I had significant GI symptoms, I've had them since gallbladder removal in 2000, so I didn't think much about them until I started doing a twice weekly bread and water fast for spiritual reasons.  Finally about 6 weeks in I realized it was the bread that was causing my innards to be torn apart, to the point that each bm I could easily identify parts of previous meals that weren't digested.  Incredible pain also accompanied these stools, and I was just beat - I was barely functioning I was so exhausted.

- thyroid levels came back still within clinical range but not optimal range (ie free T4 was 0.78 with clinical range being .7-3.2).  GP decided to send me off to an endo for dx and treatment, and to allergist to make sure there were not food allergies, and ultimately before I could see them both, I was in such pain I requested to see gastro as well.

- no food allergies

- gastro had me do a gluten and dairy challenge (10 days df/gluten-free, day 11 eat dairy & see what happens, day 12-16 gluten-free/dg, day 17 eat gluten and see what happens).  I reacted to both.  Dairy I had mostly nausea and floaty/loose stools.  Gluten I also reacted, but differently - within an hour I was swollen and had to remove my wedding rings, and the brain fog was crazy - I would tell my mouth to say something and something else would come out.  I had one loose stool, cramping, gas, a lot of dizziness and weakness, and crazy anxiety and emotions.  The next day I felt like I had mild influenza - muscle and joint pain, even my eyes burned and my cheeks were red (no fever).  Because I had such a severe reaction, gastro decided to skip the blood panel and schedule the biopsy.

- continued gluten-free/df until 13 days prior to scope (so approx a month).  Near the end of that month endo ran thyroid panel - all levels had improved after a month of gluten-free/df?!?!?  Interesting..........then I read that undiagnosed/untreated celiac can cause an auto-immune response etc and was excited that maybe the puzzle pieces were coming together.  As the month continued the brain fog mostly left, the anxiety went away and emotions leveled out, and I finally started regaining some muscle strength back, it was so nice!  For the first time in 16 years I was able to travel more than an hour without a GI explosion!  I made it an entire 2.5 hour trip!!!  I realized that I'd been sicker than we knew, and so many things I could contribute to the poison that gluten is to my body!

- went back on gluten to prepare for biopsy (still df) - immediately the pain returned as well as the anxiety, gas, bloating, rollercoaster emotions, and floaty/loose stools with cramping - there were days I thought sure there had to be pieces of my innards coming out it hurt so badly.

- had EGD/biopsy this morning.  I have to say, even gastro seemed disappointed at the findings.  Lining looked great - no apparent damage or inflammation :'(

I am so sad, honestly.  I know that sounds crazy, but I had really hoped we'd finally hit the root of this all, and could finally name it and be taken seriously and move on with life.  I know that we have to wait for the biopsy results to come back for sure, but I'm just sure they'll come back negative and we'll be left, again, without answers and lots more question.  I know some of this is my own insecurity - without a diagnosis, people (unless they've been there) think it's all in your head, and don't take you seriously.   Here are a few questions I have:

- is it possible for an auto-immune response to occur without celiac (just ncgs)?  It's hard for me to believe it's NOT an auto-immune response with my thyroid numbers improving just within the month, and with my joints in pain and muscles seemingly atrophied when on gluten.  

- is it possible to that the lining healed that quickly over the month that I was gluten-free/df and I didn't consume enough gluten to cause enough of a response?  How can there be so much pain and nothing to "show" for it?

- I'm assuming it's very unlikely that we'll receive a positive result given the circumstances, but feel free to share your experiences on this.

 

Thanks, everyone, for your support, feedback, and knowledge.  Invaluable.

ETA: exhaustion is present when on gluten (that's probably implied but just in case). Also, I am iron deficient, b12 is low but not out of range (gastro doesn't want me to start those until biopsy results are in), I am D deficient (taking 5,000iU D3 per allergist).

[Sensitiveceliac]

Well you sound exactly like me. Ok first thing I want to offer, ask them to run a gene test for celiac. If you don't carry the gene you can't be celiac if you do carry the gene all of your symptoms make sense. IMHO the worst advice ever given to me was to stop eating gluten prior to testing, why? Because yes your body can heal in a month to the point it won't show damage, it's good in one way but as you state not having an accurate diagnosis just makes it seem you are gluten free for a fad and not for medical reasons. Also, if you are celiac you need to be followed by your primary and Doctor to assure your vitamins etc are at normal levels. I was diagnosed celiac by biopsy and by gene test because like you I was advised to eat gluten free dairy free to see if symptoms went away.  Although I was "healed" my biopsy showed celiac. So don't get ahead of yourself, you still can get an accurate diagnosis. A good gi will take all of your information in and make a diagnosis. But a great indicator is the gene test. 

[GFinDC]

Hi,

Your gastro doctor is a dummy.  You never should have stopped gluten until the testing was completed.  The first testing should have been the blood antibodies.  Then you get an endoscopy if the antibodies are positive.  The University of Chicago celiac disease center recommends 12 weeks of eating gluten before and endoscopy for celiac testing.  You need a new gastro doctor that actually stays up to date with things IMHO.

[frieze]

if you are in the USA, gene tesing is incomplete.  so can  not be depended upon.

[alfenner]

As I was afraid of, biopsy came back negative.  

Now I get to decide, is it worth doing another (longer) gluten challenge to get a more accurate biopsy?  Do I ask for the genetic testing and let that guide me as to whether it's worth a longer challenge?  Or do I just move on and live gluten free because I'm not constantly sick that way?  UGH.