I have been through enough break ups this year to last me a life time.
First, it was dairy. Second, it was gluten. Third, it was the boy. And now, well now it’s gluten…again.
You know how sometimes you get back with an ex and your friends give you a ton of shit for it? That’s basically what happened with my doctor when he found out that I’d returned to gluten. (But the bread was just So0o0o0o amazing and we all know that it’s really hard to say no to amazing bread…)
Maybe a little back story is necessary –
I have had a long history of health issues that doctors seemed determined to dismiss, some being so bold as to tell me “I don’t know [what that is] but good luck with that.” Understandably, I developed an aversion to doctors. Finally, way back in June of 2015, I broke, went to an allergist and had a bunch of blood tests done, including a Celiac Panel. Shortly thereafter I ran away to Jamaica where I ate exclusively bread and pasta and gained at least 5lbs in bloat and discomfort. It was super. (Actually, Jamaica is really amazing, the “super” sarcasm should be applied only to the bloat and discomfort). Mere hours on home soil and I was then back in the doctor’s office getting the results of my blood work. The doctor came in and rather bluntly told me “So, it looks like you have Celiac Disease. On the upside, you’ll be thin for the rest of your life.”
THANKS FOR THE PERSPECTIVE.
It didn’t make sense. I’m Italian. Bread and pasta are my life. How could I possibly have Celiac Disease? My IgA numbers were above average but lower than most Celiacs. Something’s not right. Jeeze, I’m even below average as a Celiac. Pitiful.
Step 1. Denial.
Actually, I didn’t get very far past the denial stage, to be honest. I did my best to eat gluten free for about a month or so (and even then, I kept screwing it up- How was I supposed to know that a California Roll had gluten in it? WHO SAW THAT COMING??)
I knew that I needed a biopsy to confirm the Celiac Disease but by that time, I had lost my insurance coverage. So naturally, I deemed myself healthy and told myself it was silly to be on a gluten free diet. My numbers were low, I couldn’t possibly be a real Celiac (this sentiment was confirmed by real Celiac sufferers).
I’ve been back on gluten for a few months and feeling beyond miserable. I explained away my struggles because I’d heard so many complaints from Celiac sufferers that gluten intolerance is not real. There are articles upon articles claiming that it’s just a fad diet, that gluten intolerance is just a scam. Yet there are others claiming that gluten intolerance DOES exist; the Celiac Foundation included. Somehow, I still felt like a fraud; like I was just crying wolf.
I looked for other reasons. I blamed it on my thyroid. Maybe that was causing all of my symptoms (CD and hypothyroidism can have similar symptoms). In January, I was able to attain insurance coverage and decided to go all out and test for EVERYTHING. (Hypochondriac style! Rock on). I found a great gastroenterologist and got the endoscopy that I should have gotten months earlier. I found a PCP and asked her to run a million tests, including TSH and T4.
That long-winded explanation brings us to today. –
I met with my doctors again to review my results. Apparently, my thyroid and hormone levels are perfect. (Okay, ruled that out.) I don’t have Celiac Disease (Okay, that’s out..) but my doctor seemed uncomfortable ruling it out entirely. (Just kidding?)
Fun facts: I carry the Celiac gene. I’m at “moderate risk” for developing CD. I show signs of reflux. All of my symptoms can be a result of CD.
What does all of that mean? “I can’t say for sure that you do have Celiac Disease. Biopsies aren’t always a perfect indicator. It may just be a gluten sensitivity. I’d like to treat it as if you do have Celiac disease. I think you should go on a completely gluten free diet and see if it makes a difference.” (I’m paraphrasing because my memory is horrific and my doctor lingo is not so hot but that was certainly the general jist).
Once again, I feel like I hack. I can’t even be a GOOD Celiac?! Does gluten sensitivity/intolerance exist? If it does, can everyone stop making me feel bad about it? My doctors seem to think it exists. Maybe my insides aren’t dying a slow death when they come in contact with gluten but they certainly aren’t welcoming it with open arms(tubes?).
It’s hard enough knowing that I have to give up my favorite foods. MY COMFORT FOODS. But to be shamed for it on top of everything? I don’t mind the stigma so much as I am genuinely confused as to what’s happening.
So here I am, at 10 o’clock at night, drinking my tea and snacking on gluten free fruit roll ups (because #adulthood) feeling very confused. And bloated. And cranky. And bloated.
Good lord I hope the bloating, the confusion and the crankiness tag along with the gluten. I will happily say farewell if so.
I know that this is one of my whinier posts but if there is anyone else out there struggling with celiac, gluten intolerance/sensitity, confusion- feel free to reach out!
If you think you might have CD or a Gluten Intolerance, please see a doctor that you trust. Check out the links below for some more info.
Babble, Banter and Blather 
8 months ago I was diagnosed with Ulcerative Colitis. Those few years leading up to that were much like what you’ve described. I also thought the gluten thing was a fad until I tried a gluten free diet for a month or two. WOW! I couldn’t believe how much better I felt! That’s what prompted me to see a doctor. Now I know that gluten kicks my ass(along with much more) but I too had doctors who never saw it coming bc I had insurance the whole time but unless you describe your discomfort perfectly to a doctor it’s likely they’ll miss it too. Best of luck!
I have celiac disease (blood test and biopsy confirmed) and I believe that there are a few explanations. One- the tests really aren’t perfect. They can’t biopsy your whole intestine so they can miss the damage when you have the endoscopy. Two- I TOTALLY believe non-celiac gluten sensitivity is a thing. TOTALLY! If not eating gluten makes you feel better, that’s all you need to know. Don’t listen to these dumb people trying to tell you what you are allowed to eat and not eat. It doesn’t hurt anyone for you to be gluten free. Anyone who has a problem with it or requires an explanation should take a hike. If you feel better you feel better. End of story.
Thank you so much for the comment. It made me feel a lot better today. I appreciate that you shared with me! I’m lactose intolerant as well, which will make figuring out a new diet all sorts of fun but I think I’m ready for the challenge. 🙂 Thank you again for reaching out. You made my night!
Great post i can relate to the denial part of gluten intolerance, I’m greek we grew up on bread covered with amazing foods, so my entire identity was at risk and i don’t enjoy having a conversation every time i have dinner with family and friends why i have opted out of the bread, pasta, beer etc.
I hope that you are doing well with your new diet as well. It may not be easy but certainly not impossible. We got this! 😉
Celiac disease is incredibly difficult to diagnose and I understand your frustration. It sucks. I originally had the blood test done and it came back negative but surprise, I had basically no IgA so it was a false negative. Biopsy confirmed celiac—had to fight doctors to get an endoscopy. (A more in depth version of my diagnosis is here: http://glutenfreeandglittery.com/2016/01/24/the-journey-behind-my-celiac-diagnosis/). Anyways, I am really sorry about everything you are going through and I hope gluten free will become easier!! After I was diagnosed, my mood improved (my poor boyfriend and friends…I was a roller coaster of emotions before I was diagnosed). It was a slow recovery but it does get better!!! Good luck! 🙂
I am so grateful for the responses to this blog. Thank you for sharing your story! I appreciate the show of support. I’m still in denial; not quite sure that it is celiac or gluten intolerance, but whatever it is- something is definitely wrong. I have definitely been suffering from depression and mood swings and while I am sorry that anyone else has gone/is going through it, it’s nice to hear that I’m not alone. It’s been rough but I am hoping things will change soon. I am lactose intolerant as well so giving up dairy and gluten won’t be easy but it’s not impossible. I am sure that I will figure it out sooner or later. 🙂 Thanks again for sharing!