Posted by: Nancy | June 22, 2007

Thirteen things I hate about being gluten-free.

99.997% of the time I don’t mind being gluten-free, but sometimes it’s just a big old friggin, endless PITA.   Inspired by my SIL at http://shannon-payne.com/?p=15 , who wrote the 13 things she hates about her husband being deployed to Iraq, I thought I’d join in. 

1.  Second-hand gluten.  Basically akin to cross contamination and raw chicken.  You can’t just pick croutons off a salad or take the bun off the burger.   Just the residue is more than enough to cause a reaction.  My husband can’t even kiss me if he’s eaten gluten.   If it wasn’t for this part, being gluten-free would be like a walk in the park. 

2.  Loss of spontenaity.  Can’t just throw the kids in the car and take off for the day.  In order to go somewhere for the day, I have to cook at least two meals and gather snacks together for me and the kids.  No drive-thru for us. 

3.  When someone makes something gluten-free especially with me in mind, and they don’t know about item #1.   It means so much to me when someone goes out of their way, but then I have to decide whether to (a) hurt their feelings or (b) be sick for days.   Luckily, my family knows all about #1, so I don’t run into this much.

4.  My reactions to second-hand gluten.  Let’s see if I can remember them all – painful electric-shock-type nerve pain to the point I can barely walk, nightmares, nighttime insomnia mixed with daytime exhaustion, depression, anxiety, irritability, stomach pain, IBS-D and/or IBS-C, painful rashes, itchy ears and scalp, dental enamel defects, loss of balance, slurred speech (if it sounds like I’m drunk at 2 in the afternoon, I’m not – I promise), memory and concentration problems, brain fog, migraines and hair loss.   There are over 200 reported reactions to gluten – those are just mine. 

5. My daughter’s gluten reaction.  ADHD-type mood reactions, tummy aches, clinginess, loudness, meanness, mood swings.   We just did a gluten challenge on her (to determine if she was still having reactions – kids sometimes go through periods of remission that can last years) and the results are still very FRESH in my mind. 

6.  My son’s gluten reaction.  Autistic-type personality before diagnosis.  After just a few weeks, he became a fun, goofy, lovey-dovey little boy.  We haven’t done a gluten challenge on him and probably won’t for another year or so when he’s a little older. 

7.  Having to cook all the time.   Don’t get me wrong, I love that there are so many great products, but I’d love to be able to give my kids some frozen chicken nuggets or go through a drive through for some good, old-fashioned mindless eating once in a while.

8.  Having to verify products.  You know that 1-800 number on the back of products?  Well, that’s for people like me.  I’ve been known to call those numbers while grocery shopping.

9.  Products that sometimes ARE gluten-free and sometimes AREN’T, but won’t change their label to reflect that.  Eating Hidden Valley Ranch is like playing russian roulette. 

10.  Products that insist they ARE gluten-free, but aren’t.   Having celiac is like being a canary in a coal mine.  You can’t sneak gluten past us.  Wish ya could.  Really do.  Life would be so much easier. 

11.  Being very, very, VERY shy (in real life) and having to explain all this stuff to a waiter, manager, kitchen staff, etc. in order to eat out in a restaurant.   Other than restaurants who have gluten-free menus already or restaurants that are known to know about the GF diet, or pre-arranged food by hotels we’ve stayed at, I have only eaten out twice since I was diagnosed a year and a half ago.  I MUST get over this. 

12.  Having the manager at a restaurant roll their eyes and glare at me when I tried to do #11.   That happened the very first time I went out after diagnosis.  That is the biggest reason I still have such a hard time going out.  

13.  Pretending like it’s always easy.   For the most part it’s easy because the alternative is such a horrible way to live.  But then again, there are those days when it’s hard to have to figure everything out, plan for everything (including “spontenaity”), avoid second-hand gluten, etc. with a smile plastered on my face.  

 I’m very lucky to have such supportive and well-informed family and friends.   I don’t want them to think that this is hard.  It just sometimes is.  The upside is that every single thing on this list is all worth it 100x over to not feel like #4 every minute of every day for the rest of my life.  And my kids not having to feel like #5 and #6?  I’m truly blessed. 

 Nancy

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Responses

  1. Nancy – That was an awsome list! For me it vent those feelings is like a huge release. I hope we can get “others” invovled in our therapeutic weekly lists!!

  2. For me there would need to be number 14, Family Members in Denial and who constantly ask if they’ve fixed you with a pill yet, won’t read the literature you try to share with them….yada….yada…yada….

    Great List by the way.

    Sheltie Girl @ Gluten A Go Go

  3. I love this list and can so identify. Number 8 made me smile, since I very often call the 800 number from the grocery store. Thank you for sharing the information in your blog! I have been enjoying reading it.


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