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
FatGirlvsWorld is now Gluten Free
I'm go glad you have an answer!Reply
So glad you have an answer!Reply
I've been mainly gluten free/cow's milk free for about 5 years, but going off the reservation occasionally. I regret each time I do. (pizza, the older I get the less I can tolerate it.
For the first year things will be challenging. Gluten is in so many things that you'd never think of (regular soy sauce). Then, as the habit sets in, your life will return to your new normal. Your dad will learn how to make the best gluten-free crust.
I am so happy that you FINALLY will be getting relief! Thank goodness for persistent friends, and for you being willing to give this one more look. I know having Celiac is not fun at all, but I also know you'll feel so much better. Wishing you love, light, health and happiness at every corner, dear lady.Reply
I'm so happy you have an answer to the mystery. Took my Drs years to finally diagnose me. You will have some up hill battles with food for the next bit, but your body will heal and get better. If you have any questions totally ask, I've got almost 7 years GF under my belt and I do lots of traveling, so amazing GF food can be found and making swaps in recipes isn't as hard anymore.Reply
Thank you all so much -- I'm glad this is happening now, versus 10/15 years ago --Reply
There's a lot more support and resources for going GF now than there ever was.
So happy for you (to get a diagnosis!) We do not seem to have any gluten issues in my little immediate family unit but familiar with it as many other family members do. One of my favorite healthy blogs to follow is the following (and she is gluten free as well.) http://inspiredrd.com/2014/02/gluten-free-love/Reply
Ooh man, tough sentence but lots of ways to be GF!!! Thank goodness you can work on being healthy again! Love you!Reply
I'm so glad for you that you at least have a diagnosis and it's something that is treatable/manageable (still not fun). It is a shame that some faddy people have given GF a bad name, but on the other hand why shouldn't they eat gluten free if they want to? Actually to answer my own question, I've read a chef saying if they have a celiac customer they go to a huge amount of work to make sure the food is GF and not contaminated, so it is a big hassle if someone says they need to be GF and it's not true.Reply
I think the best way to be GF is not to buy special "gluten free" products but just eat real food like meat, fruit and vegetables that don't have gluten anyway. That is my current diet.
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