Monday, May 2, 2016

The Verdict Is In

If you've been following me on Twitter or Facebook,or even here, you know that I've been off  the past few months.  Not just off but uncharacteristically quiet.  This is what happens when I'm sick, I turn inward and just try to get through what I'm going through. 

The tl:dr (that's "too long; didn't read") of my situation is that I've been sick for 8 months. It started suddenly on September 1, 2015 and it wasn't until May 1, 2016 that we zeroed in on what's wrong.  It's been 8 months of feeling like a zombie -- low energy, terrible reflux, pain in my side (among other symptoms).  

We (hospital, Gastro 1, Gastro 2) ran every diagnostic/test we could think of to figure out what was happening in my gastrointestinal tract that was making me so sick (HIDA, ultrasound, CT, EGD endoscopy, gastric emptying test (yay! nuclear scrambled eggs!), endoscopic ultrasound, and was scheduled for a 24-hr esophageal pH test). 

But I finally caved in to my friend J's offer of help.  His girlfriend (S) is a doctor and wanted to help. I didn't want to feel like a burden or that I was being "that person" who talks only medicine with a person who just happens to be a doctor.  But man, I wish I hadn't waited. 

She zeroed in on something on my EGD results:  
The biopsies show a non-specific response that may be the presenting manifestation of celiac sprue in some patients. If celiac sprue is suspected, suggest correlation with celiac studies to help in the evaluation of the disease process. Other etiologic considerations include toxic reaction to gluten, NSAID use, and infection (including Helicobacter infections in the stomach, bacterial overgrowth, viral gastroenteritis), non-celiac or tropical sprue, autoimmune enteropathy, medication effect (including NSAID's and possibly olmesartan), amongst others.
I had listened to Gastro 1 when he said I didn't have the Big Cs -- Cancer, Crohn's, or Celiac.  But now I felt kinda dumb for not following up on this note.  Thanks to S, we started to look at the pain in my side not as a cause, but as a symptom.  I went to my PCP and brought her in the loop and she said it was worth a shot. 

So we did 2 blood draws (one for my normal blood tests, one for the celiac tests): 





Yesterday evening, I was cuddled up with Jack when I got the message from my primary care doctor: 
The celiac tests are abnormal. The TTG is weakly abnormal but the gliadin test are both abnormal. The reticular antigen is normal. All together I think this is consistent with Celiac...
I welled up with emotion and cried for the next hour or so.  About 95% of the crying was relief in knowing  that I would get better.  Okay, maybe 90%.  10% sad that I wouldn't be able to eat, without modifications, NYC pizza or my dad's apple pie.  (And no I can't cheat: if I have an auto-immune reaction to eating these things, just having it for special occasions can still make me sick.)

I've spent the past week trying to educate myself (I've been listening to Dr. Tom O'Bryan a lot) about Celiac and gluten sensitivity.  First of all: it's real.  For so long I rolled my eyes at people going gluten free as a fad diet, but studies are starting to show that many people have non-Celiac gluten sensitivity (that is, they show an inflammatory response, but no damage to the lining of their gut (the defining characteristic of Celiac)). It's just that some people's bodies can tolerate the inflammatory response better than others.  So while some people may be doing it as a fad, they may actually be doing good for their body, but only if they're eating a healthy GF diet, not a crap GF diet (not just ice cream, diet coke and tequila).  (Tangent: interesting study comparing response to modern vs "ancient" wheat varieties.)  

Apparently, Celiac Disease is just one of over 200 ways that gluten sensitivity can manifest in our bodies (the gluten sensitive end game):  GERD and gallbladder inflammation, for instance.  It perhaps can also explain why my iron, vitamin D, and vitamin Bs are all low (celiac-related malnutrition).  It could also explain why I have bad menstrual cramps, could also have an impact on my spine health, etc.  I'm hoping to see improvements in those areas as well. 

So yeah, the verdict is in:  

FatGirlvsWorld is Gluten Sensitive, possibly has Celiac Disease

The sentence: 

FatGirlvsWorld is now Gluten Free

Friday, January 29, 2016

....And a million miles...

Hello, It's Me




To [run] over everything



...

Hello from [my back] side
At least I can say that I've tried.



Monday, January 4, 2016

Heavy

I had an appointment with my primary care provider, Dr. F today to touch base on all of the fun medical stuff going on with me (tl;dr -- 4 months of pain underneath my right ribs, reflux, vomiting, etc.).  

She reaffirmed that I'm doing everything as I should be doing, but that I might be one of those "medical mysteries" that you read about in the Post.  In other words, multiple doctors have run all the standard diagnostics (blood, CT, ultrasound) for the most likely causes for the pain (friggin gallbladder), but they're not yet able to explain why I am in pain.  Doctors even did the next level of testing (HIDA, EGD endoscopy, gastric emptying study) and couldn't find a cause for everything going on (just confirmed some symptoms).  So we're moving into more focused tests (abdominal MRI (Jan. 13), endoscopic ultrasound (Jan. 25)).  We briefly discussed the possibility of needing surgery down the line to help with a diagnosis.

It could still be my gallbladder, could be a Sphincter of Oddi dysfunction, it could be an alien just biding his time in my gut before he breaks out in song, it could be (though unlikely) a muscle tear in my side. 

One moment that kind of took me by surprise was the concerned face she made when we talked about my losing weight.  She knows that this number represents 2 months of throwing up (September/October) and 4 months (September–present) being skittish around food and not exercising.  She knows that I haven't been taking vitamins, feel really weak/tired because I'm not eating enough calories, and that generally I feel like shit.  She'd rather me weigh more and feel better than to see the scale go down and me feel so broken.

In other fun news, based on my blood work/pap smear at my annual obgyn exam, I got to have a colposcopy on 12/23.  They took two cervical biopsies. I got the results back today and.... benign squamous epithelial cells. So we'll keep an eye on that going forward, but a little good news today.

Wednesday, December 30, 2015

#GoTheDist 2016


Stephen King wrote in his book "On Writing: A Memoir of the Craft,"  "You can, you should, and if you're brave enough to start, you will." (emphasis added)  He called this a "permission slip." Couple this with Ranier Maria Rilke's "Letters to a Young Poet" (which I talk about here) and the whole picture emerges:  when faced with the questions of who we are and what we want to be, we need to harness our passion (Rilke's "I must"), couple it with the strength of our heart (courage), and not get in the way of our own potential.

Excuses become victories to overcome.
Obstacles become challenges to meet head-on.
Failures aren't disasters, but stepping stones.

That last one is important.  I know so many people who are afraid to evolve, to try new things, to go new places, to meet new people because they fear the failures that may await outside of their comfort zone.  That's an oppressive way to live -- and it's self-inflicted!  There's such great freedom in detaching yourself from expectations (of failure or even success).  It a beautiful blank canvas where anything can happen (Bob Ross: "We don't make mistakes: we have happy accidents"). 

#GoTheDist 2016's theme hopes to inspire and encourage the greatness that is within all of us.


Are you ready?




How to Join #GoTheDist 2016

Sunday, December 13, 2015

Exhausted

A few months ago, I wrote about my fun trip to the hospital because of abdominal pain that I was feeling.
Timeline
9/1 & 9/2 - Hospital
Bloodwork, Ultrasound, CT, HIDA (nuclear test of gallbladder function). Left hospital with anti-nausea meds (Bentyl and Zofran). They recommended a follow-up with a gastroenterologist. 

9/11 - went to Dr. C.; didn't have best impression of him (he didnt even touch me/investigate during first exam). Gave me trials of Dexilant (GERD meds) but no prescription. Recommended that I take Prilosec (over the counter anti reflux meds). Scheduled me for endoscopy.

10/9 - Upper GI Endoscopy (EGD) (camera down my throat to view esophagus, stomach, and duodenum).  Revealed irritation (erythema) consistent with gastritis/reflux. Biopsies taken during EGD came back negative for ulcers, cancer (Barrett's Syndrome), Crohn's, celiac, and Heliobacter pylori.

I pretty much was throwing up every day or every other day in September and October. I am on a low acid/low-to-no fat diet (with a few other nos: caffeine, alcohol, gum, onions).

took a nap under a Geiger counter. 
11/5 - went to new doc (Dr. Z). He prescribes a stronger anti-reflux meds and a gastric emptying test. Stronger anti-reflux meds help for the most part. I only throw up about once a week now and it is largely based on me and my diet. Drinking too many liquids is usual the culprit.

11/18 - Gastric Emptying Study (see photos) (eat some radioactive eggs and see how long it takes to move through upper GI). Just got the results and they are normal. This rules out gastroparesis (slow motility of stomach)

12/14 - follow up with Dr. Z.  [Edit:  we talked about life since on omeprazole -- which has been better, but not perfect.  I'm still waking up with acid in my esophagus.  He's prescribing something for overnight.  We talked about my diet. He said that I should be able to eat some of the restricted food groups in small portions, but I told him that I've not had any luck with that.  I still have the pain on my right side.  He said at this point it might be musculoskeletal (i'm dubious about this...).  But that there are more tests we can do that could help figure out what's going on (and could also help determine if it's musculoskeletal) -- an endoscopic ultrasound and an MRI.  If those prove to be inconclusive, it may be the time to talk to a surgeon.]

Complications
During all of this, I had a ton of stuff going on at work as well as an office move.
Thanksgiving made me terribly sad cause it is my favorite holiday and I couldn't eat my favorite foods so I didn't go. Glad I didn't go. Spent most of the day in bed crying between trips to throw up.

Thoughts
I have been really frustrated because it is 3.5 months later and we are no closer to a diagnosis. Chronic pain (back) + chronic illness (gut) has been a really tough one-two combination. Feeling beat up is an understatement.

As drinking liquids tends to trigger my nausea (no matter how slowly I drink), I have been operating pretty dehydrated and this hasn't been good for my back. I tried holiday shopping yesterday and after 30 minutes and one bus ride I was already limping (and was without my cane).

I spend a lot of time in bed because I have no energy or desire to engage in life any more than I have to. At least Jack is a cuddle monster.

I had myself a good cathartic cry yesterday. I know many people in the world have a harder life than I do -- no doctors, no medicine, no sick leave from work, no insurance, no cuddly cat, no warm bed, no roof.... but as people keep asking me what I want for the holidays, it is abundantly clear that I don't want or need trinkets. I just want my health.