A month or so ago, I was in the midst of a pretty crappy stretch health-wise and went all-out to find a cause and a solution for my health woes.
Truthfully, it’s been up and down since my diagnosis in 2007 and I simply just wanted to feel “good”.
In addition to going to a number of doctors, getting multiple tests and spending a boatload of money, I received a lot of awesome advice from the gluten-free community with a multitude of suggestions. To all of you, I am grateful.
But among all of the suggestions was an email from “Monica” (not her real name) that offered a completely opposite viewpoint; namely that we have celiac and feeling shitty is just the way it’s going to be at times. The email was so well-written and really struck a chord with me.
Please read it below and let me know what you think.
Should I stop trying to find the holy grail and accept my health as it is?
Is this simply as good as it gets??
Hey there Gluten Dude….
I wanted to write something on your blog post today about your test results – but as I appear to be of the minority opinion… I don’t really want to hear again that I should be continuing to test. I tried to express my opinion about this once before – but while I know everyone is just trying to be helpful….I just don’t need to hear it again. So, I will offer you my opinion here.
I am absolutely of the opinion that we have Celiac Disease …it is here to stay… and this is the way we’re going to feel. Period. I have gone through a multitude of tests as well…. all kinds of blood work and scans and have seen multiple “specialists” (but, no there are no Celiac specialists near me.)
They did end up finding a thyroid issue – which I thought I could blame ‘all’ my issues on, but no. The doc told me I didn’t even need to be on the thyroid medication anymore unless I try to get pregnant (which is a whole different topic) because it was such a ‘slight’ issue. Apparently it was just temporary thyroiditis and while it ‘may’ flare up again – it wasn’t going to be too much of an ongoing issue. I literally cried in my doctor’s office when she said that wasn’t my problem – because I was banking on that being ‘THE’ problem that I was going to be able to fix. [sigh!] I even had to endure a 5-hour barium swallow x-ray procedure once. Hey, I figured – I can deal with this as long as they find ‘something’. But, again – there was nothing to find.
Sure, I’ve been told to take probiotics….and I’ve been told to take vitamins. Yep – been there, done that ….don’t feel any different.
So, in all honesty – Dude, I’m done looking. I made that decision about 5 years ago and I’m happier for it. I still have stomach issues of some sort nearly every day (bloating, cramping, etc.) – but I deal with it. I am still tired….but I work around it.
I have just learned to accept that this is who I am – with Celiac.
Now, I see that people are questioning your & Mrs. Dude’s kitchen – but i would venture a guess that you guys are pretty damn careful when it comes to your glutenous surroundings. So am I – and I am 99.9% sure I am not getting accidentally glutened. I have been doing this for 10 years – I know when I’ve gotten glutened and when I haven’t. Plus, I must have healed so well on the gluten-free diet initially – that my 2nd doctor couldn’t even confirm I ever had Celiac in the first place (without reading the pathology reports from the first biopsy). And, I still feel way better than I did at that point.
Sure, I could give up soy, eggs, all grains…etc., etc…. but my stint with taking dairy out of my diet – was for nothing. So, I would rather ENJOY my food and feel … well, like a person with Celiac …. than eat bird food – and still feel like $%^#. I want to enjoy life as much as possible….. so, this is what I’ve decided to do.
I have also received the same response from doctors – wow, you’re only 35 and your medical chart looks like you’re an 80 year old woman. ;- They threw so many drugs at me trying to ‘fix me’ – it was ridiculous. About 2 years ago, I decided to stop taking ‘all’ medications – and you know what… I feel exactly the same as I did while taking the medications – if not better.
I also realize that since I was in a crappy marriage at the time… I kept thinking that if I fixed my health problems, the marital problems would be fixed as well. So, I put a LOT of stock into “fixing” myself. So – when there didn’t appear to be anything further wrong with me – other than Celiac – then, I realized the problem may lay elsewhere.
I finally moved on from that marriage and I am very happy now with my new husband. I have the exact same symptoms now as I did back then – but I can “live life” with them better now that everything else has fallen into place. It seems like you and Mrs. Dude and the dudettes have a pretty happy life right now – other than your health issues. I guess what I’m saying is….. even though I am on my 8th week of laying in bed with my back problem…. I STILL say – “It can always be worse”.
Put your extra thoughts into your beautiful children (since some of us don’t seem lucky enough to have them….) and less into “what’s wrong with me”.
As far as I see it – there is nothing wrong with you, Dude. You’re a happy, healthy (relatively!!), thriving, popular & successful Dude…. with a loving family and supportive friends. Can’t ask for much more than that.
So sorry this has gotten so long but back to the topic at hand. I am sure all the Celiac specialists out there would say keep testing, keep testing, keep testing…. but, what if there is nothing to find – and all you end up being is a human pin cushion?? I just don’t know if it’s true that “if you’re eating a gluten-free diet – you’re as normal as anyone else”. Seriously??
Instead of trying to be a normal person’s “normal” – I have decided to live with what appears to be “normal” for me. An important lesson I learned from my previous marriages is that I need to stop being something I am not…. trying to be what someone else wants me to be – I just need to be ME. The right people will love me for who I am (Celiac and all).
I am not necessarily saying quit all testing immediately – you have gone this far, you ‘may’ want to investigate one or all of the specialists that your doctor recommended – but, at the end of that (which I am also assuming will all turn out ‘normal’) …. you may want to decide for yourself what I already have – this is me…this is life…. now, I’m just going to live it.
I wish you well – and I wish I could say ….there is a “normal” life out there beyond the rainbow and to just keep striving for it – but I truly believe this is ….”as good as it gets”.