This Thanksgiving I mourn the loss of stuffing. It’s my favorite part of the meal and honestly, I could eat it everyday for a month and still not cry out for turkey. This year, I get none of the buttery, crunchy toasted goodness. Well, I could, but it’ll hurt.
Apparently, I have non-celiac gluten sensitivity and may actually have full-blown celiac. It’s confusing on so many levels for me, and apparently lots of others as well.
Now before you get all huffy about another person self-diagnosing with the fad disease du jour, know this: I had blood drawn and tested at the suggestion of my primary care physician based on symptoms I described through an active conversation with her and showed to her.
Now if you’re still here, I’ll continue.
I wish I had this conversation with my doctor YEARS ago. Apparently I have, and now had, symptoms I didn’t even realize were symptoms. Things I thought were minor or were explained by other things, could be caused by this. If you’re game, here’s a five that I found surprising.
- Rash on my face – This was a huge thing for me. It started when I was about 8 months preggers with Miss O. I read about how some women get “pregnancy mask” or rash or whatever you want to call it and figured it would go away. She’s three and a half and this nastiness is still here. My dermatologist pronounced it Rosacea. Topical cream and an aggressive dose of Doxycycline did nothing. One look from my PCP and she pronounced it “Celiac Rash.” Dermatitis herpetiformis to be precise, though a mild case most likely kept at bay by some of my other meds. Who knew?!
- Chicken skin/little bumps on the back of my upper arms and thighs. All the sugar scrub and lotion in the world does not make this stuff go away. I figured I was starting down the face of the big 4-0 and that was one of my Grown Up Lady Gifts. NOT SO! One week without gluten and they are GONE.
- Feeling bloated ALL THE TIME – I now know what being full is supposed to feel like. It’s an odd thing to say, I realize, however it’s even more odd when you realize the way you feel after eating two slices of pizza is not normal. I thought that was another Grown Up Lady Gift and figured I should add it to the list of foods that I just can’t seem to eat anymore. Apparently, that “full” feeling was not in the right place. It was gas and bloating and NOT NORMAL. Hmmm…perhaps I should have mentioned to my doctor I had a list of foods I just can’t seem to eat anymore.
- Anemia – This was not entirely a surprise to me as a symptom as it was a surprise that I was still anemic. I take a multivitamin in the morning every day and an iron supplement with dinner every day. My test results don’t show enough of a change which, to my PCP, indicates that I’m not absorbing things the way I should be. We’re retesting that one in about a month to see if it’s changed.
- Easy bruising – This is a great example of how one diagnosis can hamper another diagnosis. I have been diagnosed with Rheumatoid Arthritis and Hashimoto’s for several years. Easy bruising, along with a host of other things, is a classic symptom of both, so I don’t mention it as a symptom of anything that may be “going on with me.” I would not have mentioned it if my PCP had not seen my legs and started asking me about all my little bruises and broken blood vessels.
I cannot stress enough how much I wish I had even considered having this conversation with my PCP. There are many reasons and situations why, in my case, it was not clear or difficult to pinpoint. Which brings me to my next point. This is not an easily identified disease. My PCP told me it is one of the many “hidden diseases” that is not only hard for a physician to diagnose, especially without testing, but hard for patients to realize they may want to talk about with their physician in the first place.
It’s hard to know what might be a symptom of something, especially when you’ve been experiencing something for an extended period of time. Talk about it anyway. Ask clarifying questions back to your doctor. If they ask you if you have joint pain, you ask them what they mean by pain. Be honest. It is your job to have an open dialogue about how you feel and your physician(s) need to know about all of it.
For more information on Celiac and non-celiac gluten sensitivity, I recommend visiting Celiac Central, a great website by the National Foundation for Celiac Awareness. It’s been a great resource for helping me navigate my new normal and even though I’m not affiliated with them in any way, I will send everyone I can to their site for help understanding this mischievous little situation.
In the meantime, I’m going to pig out on turkey, sweet potatoes and investigate this gluten-free stuffing I found at Trader Joe’s. It won’t be the same, but at least it won’t hurt me. Unless I eat it all…