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testing update

ironictruth

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ironictruth Proficient
ironictruth
Posted

There were some folks who asked me for an updatE As they had similar Results.  I'm going to give the most recent update and history first and then the surprising Semi conclusi

I had my endoscopy in April with the celiac center.  it showed merely an increase in IEL, no villi blunting. 

DGP combined assay  was positive on more than one occasion but when separated out was negative including a month after the biopsy. 

My brother is seronegative celiac. 

 At the poor advice of my primary care I started a gluten-free diet a little over two years ago.  I then underwent a six-week gluten challenge with perfect endoscopy.  I went gluten-free after the challenge but admittedly was still going out to eat and Not watching cross-contamination. Several months later due to pain and nausea, they gave me another endoscopy which showed acute dUodenitis, just inflammation, no Villi blunting. 

 All sorts of weird s*** started happening toward the end and after the gluten challenge.  prior to this I have been to the doctor a couple of times for sinus infections and suddenly I found myself Visiting cardiologists, endocrinologist, switching Primary Care docs, getting a new GI.  I was lectured by multiple doctors on the fact that I did not have celiac disease and told that gluten free although Celiac is real, is also a big Fad.  I tried, to no avail, to explain to these doctors that there was definitely something wrong and it wasn't in my head. It either is celiac disease and we're missing it, or there is something else that they need to find.  I had no desire to become part of some gluten-free fad,  I was just trying to find a way to accurately and conclusively come up with a diagnosis for my symptoms so that I can move on with my life. 

 So, after the initial pathology report came back in April showing increase in IEL only,  which is fairly nonspecific, I continueD to feel frustrated but moved on.  at the very good advice of some of the folks on this Celiac Ford, I asked my local GI who can't stand me, to do a capsule endoscopy.  he told me it would not show anything. It did not show anything in the small intestine but it showed gastropathy in the stomach.

 However, and this is where it gets good, 2 days after the pillcam when I didn't have the results yet, I got a call from the Celiac Center. Apparently they had yet to do their interpretation of my biopsy from back in April. it was just the pathologist from the hospital Who had done the initial report. The center recut the sample and found increase in IEL, crypt hyperplasia and some normal Villi and some blunted Villi with a marsh score of 2 through 3A. 

 I have a follow-up with the GI who hates me in the middle of the month and with the Celiac specialist at the end of the month to discuss.

 I  have a lot of questions for the Celiac specialist because of course I am still terrified that we don't have this Answer yet.  but if I'm going to believe anyone, or anyone is going to put my mind at ease, it's going to be him and none of the doctors that I have met here locally.

 in the meantime, over the course of the last 6 months, I got off of all the stupid medications I was on and didn't need and started running.  I figure as long as I can run I know I'm not dying. There are days I feel so bad that I cannot but I can always usually get up within a couple of days and go for a run.  I am training for my first half marathon next month. I know I can do it because I've already done a couple 10 to 13 Mile runs.  And I've run three races, tWo 5 K's And one 10k and placed all three times in my age division!  running has been the best thing I can do for my mind during this time.  I also figured I oughta be doing pretty darn well I actually start feeling good.

 plus the pain in my legs distract me from the pain in my stomach. Unintended bonus! Lol!!!

 

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cyclinglady Grand Master
cyclinglady
Posted

Are you kidding?  (Actually, I used different words that were not appropriate to publish).  

I do not have time to really respond, but kudos to you for running.  Heading over to the school to fit band uniforms.  

ironictruth Proficient
ironictruth
Posted
  • Author
30 minutes ago, cyclinglady said:

Are you kidding?  (Actually, I used different words that were not appropriate to publish).  

I do not have time to really respond, but kudos to you for running.  Heading over to the school to fit band uniforms.  

 Yeah, sometimes when I'm running I actually think of you cycling while you Were Anemic and I'm like, "I have got to be able to finish this".

 I should probably get my Ferritin checked again actually. it had dropped from the 70s to 20 and it's been a few months since I had it checked.  I am on iron daily now so that it doesn't drop anymore.

  the Celiac Center immediately Faxed me a report so that I Could see it in writing  because I was in disbelief.

Band uniforms Aye?  I guess I better get to clothing shopping for my first grader soon! Can't believe schools around the corner again.

Gemini Experienced
Gemini
Posted

 Do I understand correctly that you are still unsure on whether you have Celiac Disease?  The Celiac center nailed it, which is great because all those other docs failed you and did what they all do to most people who think they may have it.  Two things........

I love your sense of humor as in how you keep on referring to one of your docs as the"one who hates me".  I've had that experience, unfortunately.  Know how you feel.

Secondly, I love that you ditched your meds and started some serious exercise! Sometimes when you push yourself, everything gets better.  Sure, you'll have your down days but this is all good and I wish you the best of luck with running those half marathons.  You would be surprised at what you can do when you teeter on the brink of anemia. I look back and wonder how I did what I did.  Good for you and I hope it all gets better from here!  :)

ironictruth Proficient
ironictruth
Posted
  • Author

Yeah,  so after being so unsure in the last couple of years about the diagnosis, and being told it is not celiac, I'm still a little unclear.  it is always tricky for them when the TTG is not positive And the EMA is negative.  other things can cause your Villo Blunting. But, in my case I have a sibling with Celiac and also genetic predisposition so it is likely is celiac. I have Dr. Fasano as my Celiac specialist and I have a visit with him at the end of the month. So what he tells me I'm going with. But we have yet to discuss the Pathology that they faxed me the other day.

Yes,  I now absolutely love certified gluten free black bean pasta. chock-full of iron and protein and a great way to carb refuel.  I'm just glad that we caught this fairly early because if I started dropping weight while running I would have to give it up. 

 I will keep everyone posted on the off-chance they diagnose Me with some obscure parasitic disease related to monkeys.  Otherwise I will assume I will become one of the others who posts random questions about which foods from Trader Joe's I am allowed to eat  and if my sunscreen is suspect.

Gemini Experienced
Gemini
Posted
14 minutes ago, ironictruth said:

I will keep everyone posted on the off-chance they diagnose Me with some obscure parasitic disease related to monkeys.  Otherwise I will assume I will become one of the others who posts random questions about which foods from Trader Joe's I am allowed to eat  and if my sunscreen is suspect.

I wouldn't worry about that unless you start to really crave banana's.........:P

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