Sunday, November 11, 2012

Hitting the Wall

When you are sick for a very long time, and no one gives you any answers, it sucks. You start to question yourself, your symptoms, your mind. It is terrifying and isolating and there are days you would give anything to know what is wrong and how to fix it.

And God bless the doctor who finally gives you answers, at least some of them, and sets you on the path to feeling better.

But what happens eight? Nine? months down the road when you feel awful all the time again, and your blood work shows you are following your stupidly rigorous diet to the letter so obviously, this, too, is all made up?

What happens when it is a struggle, mentally and physically, to get out of bed in the morning and go to work? How about when anything you eat makes you hurt? And all you feel is guilty, because you are making so much hassle for everyone else? What then?

Six months ago I was frustrated at the challenges of following a gluten-free lifestyle, but I was starting to feel healthy for the first time in more than a decade, so the scales tipped in favor of all the work and expense it took to live gluten free.

About two months ago I was slammed with a pretty nasty sinus infection, and within a month, a second one. And I haven't felt well since then. Not just in an "I have some sniffles" way. I'm exhausted all the time. My joints hurt. I've been working on crocheting a scarf for weeks, because I can get about two rows done before my fingers just lock up. And I'm back to having to scout the location of the nearest bathroom any time I leave my house. I have no energy, and some days, it takes all my spoons just to get to work. This comes at an awful time, as we are heading into the holiday season, my first as a card-carrying celiac, and I know it's going to take loads of energy to handle it.

I normally like to keep it pretty light here. Yummy food. Fun events. The sunny side of celiac, if there is one. But pretending everything is okay when it's not? It's exhausting. I'm tired. There's hope on the horizon, though, in the form of the University of Chicago, and I will be visiting them early in December to hopefully find some more answers.

Those of you who are veterans of this nasty disease, did this happen to you?  I'm not looking for pity, I am looking for answers, and maybe a little bit optimism.

16 comments:

  1. I'm sending you a virtual hug. I'm so sorry for what you have to go through. And don't feel guilty. People with cancer, diabetes or asthma don't feel guilty. It's a medical condition and not a choice, so the people who you're worried about inconveniencing probably think nothing of it.

    I hope you feel better soon.

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    1. Kelly, I have said it before and I will say it again - it means so much to have IRL friends like you who get it and still love me anyway:)

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  2. I'm in the same boat. For the first few months after my diagnosis I felt great, more energy and no more "tummy trouble". Then, all of the sudden I got sick and it seemed like it took me a really long time to re-bound. I think it's important to remember that our bodies have been through a lot. Who knows how long the damage had been going on before we even developed symptoms. If it makes you feel any better, I've found your blog to be a wonderful source of humor and camaraderie when I needed it the most. Hope you're feeling better soon!

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    1. It's true, we celiacs are pretty much a hot mess. I'm really glad to know that I've helped in any way. Hopefully the funny, snarky Alissa will be back soon with a plethora of gluten-free witticisms.

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  3. I too struggle with celiac that is refractory...don't know if this will help you --but I can only eat mainstream GF goods a very small proportion of the time ...some of the time if I prepare grains ala Dr Weston Price ( soak the grains or flours overnight in an acid medium--either lemon juice if lactose intolerant ( I am) or in whey ( the water left over from yogurt)I can increase my tolerance...sometimes this won't work & I'll go specific carohydrate ( small amounts of nutflour goodies, no grain or starch at all) & sometimes just meats & cooked veggies or fruits with L-glutamine & other gut healing nutrients for a while....babying myself by listening to my gut has allowed me to stay fully employed as a single mom for 10 years...on the upside-- I have discovered that the week after my monthlies I can get away with more treats & so I enjoy them with gusto while I can!! I used to moderate a list serve of folks with gut issues & hormones were frequently a part of the pattern ( I can barely tolerate even basics my p.m.s. week --a common issue!)It can be very frustrating at times & potlucks are a nightmare but It can be done though--I hope you feel better soon!

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    1. Gisele, thanks for the tips - I had never heard of soaking grains in lemon juice. You are so right about potlucks being a nightmare ... I shudder to think of what lays in store for me this holiday season!

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  4. same here. i developed several food "intolerances" egg, dairy, citrus, onion, poultry, etc. etc. etc. once i figured out what was making me feel bad again and i eliminated those foods i felt great again! have some food allergy testing done a.s.a.p. good luck and know that you're not alone.

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    1. I foresee an elimination diet in my future, but I am trying to dodge that bullet for as long as I can - here's hoping the fine folks at U of C can figure me out!

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  5. Girl you are not alone. My joints are hurting more and more each day. My hands lock up now doing my make up and cutting my chicken the other day. I took the trash out the other night, came inside my hands were bright read, swollen, and stiff as crap - just from taking the trash out. I now have the sniffles every day, I have tried all over the counter meds, nothing makes it go away. I have made my appt with the allergist for allergy testing, I want ALL the panels run. I will also be seeing a rheumatologist. There are days where I can be standing just 15 mins cooking and I have to sit because it literally hurts down to the bone. So I too am on the Celiac quest for answers. Your not alone at all!! <3 xoxo

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    1. Thanks, Chrissy. Here's hoping we both find some answers soon - we're waaaaay too young to be such old ladies:)

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    2. I know. We are both the same age and I am thinking, what happens 20 years from now?

      Nevermind...I don't want to look at 30 yet! ;)

      Hope you had a fantastic and glam birthday!! xoxo

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  6. I'm going through the same thing right now, you're not alone. I've been GF/diagnosed celiac for 7 months and had been feeling fantastic...til about 2 months ago when I was hit with strep and a sinus infection. I am currently on my third bout with strep in 2 months and am feeling so icky...my tummy has trouble again, I am constantly tired...On Monday, I had blood work done to see if they can pinpoint something, whether or not it is related to celiac...etc. You are NOT alone. This crummy disease will not get the best of us, though.

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    1. What is it about stupid sinus infections? Seriously, bodies, get it together.

      Also just checked out your blog for the first time, and added you to my Rad Reads:) Hope you get some answers soon, too - it is hard enough being in college without the added stress of celiac.

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  7. I'm also going through the same thing right now. It feels like what could be described as a " gluten relapse" only I didn't eat gluten. I'm now blaming the GF products out there that promise to be safe but I feel aren't. Regularly I'll eat a product deemed + marked as "Gluten Free" but I still have a reaction -- whether it be "brain fog", acne, extreme bloating, pain, etc.

    I also boil it down to eating one too many GF processed food product, which I know isn't good for me GF or not, so I'm trying out a more "paleo-esq" diet, where I incorporate more veggies, fruit, and even drink more water. I did this several months ago and I felt incredible again - similar to when I first found out I had celiac and went Gluten Free.

    Hang in there! You are NOT alone!

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    1. Even though I am crazy careful about gluten, I've been relying way too much on pre-packaged GF treats. I thought about doing a Whole30 challenge, but I am a giant chicken, and I am terrified that giving up MORE food won't really help my physically and will be more than I can handle emotionally. Can I just say that celiac sucks?

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    2. Paloe-Esq...Katie I love it :)

      Alissa I too want to try the Whole 30 but then I am like well what is left.

      Gluten can kick rocks and Celiac can pound sand and jump off a lake.

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