A Day in the Life of a Glutening

The newest word in my vocabulary is "glutening". It has also become a word I loath. I am allergic to gluten and and when you accidentally ingest gluten we call it a "glutening" or "getting glutened".  Oh, if only restaurants could understand what this does to someone with Celiacs.  It is so much more than a preference not to eat gluten, it's even more than an upset tummy or a little nausea.  This happened to me yesterday when in a moment of weakness I made a rookie celiac mistake:

 I was at a local restaurant and ordered a drink...nothing else on their menu was "safe" until I started asking about their french fries.  Most fries don't contain gluten but usually restaurant fries will be cross contaminated when the restaurant cooks them with other fried foods.  So you learn to ask if they have a dedicated fryer just for fries.  I actually did remember to ask this and they said "Yes, we have a dedicated fryer".

Wonderful!!  I can order a small fry with my drink.  This was good news...or so I thought. Unfortunately, I didn't have my husband with me, as he always reminds me to ask if they cook their morning hash browns in the dedicated fryer (which is almost always a yes) and hash browns do contain gluten!  I sat down with my fries and after eating just one I felt a burning in my stomach. Never a good sign...hmm...I quickly set the fries aside and said a quick prayer that my worst fear was wrong.

Well...my stomach was telling me the reality of my mistake...are you serious?  I messed up again?  Maybe it won't be as bad this time?  That's it I'm swearing off of restaurants for good?  Did I mention that there is a very emotional side to being glutened? Every Celiac new or old has been here with me, that moment you realize you have been GLUTENED!  We try so hard to avoid this allergen called gluten, adjusting our eating habits and changing our way of life. Missing the old freedom we used to have to eat whatever and where-ever we want to.  But is it really that big of deal?  How bad can gluten really make you feel?  It really can't be all that bad right?  Is "glutening" a real term? I'm glad you asked.  I thought it would be helpful for those who might not have food allergies to know what someone who does goes through when accidentally ingesting even a small amount of the allergen.  It may also be helpful for those of you who do, to know that you are not the only one out there that faces these issues.

I kept a play by play of what happened yesterday after eating that one fry and this is why Gluten is a big deal to me:


12:01pm – Ordered a soda at a local restaurant and was tempted by the fries.  Asked if they cooked their fries in a dedicated fryer…YES!!!  Awesome their ff are gluten free

12:05pm – Ate one fry…felt it burn a bit as it hit my stomach.  Set the fries aside.

 

12:06pm – Stomach begins cramping

12:10pm – Pain begins to radiate into lower back

12:30pm – 25minutes spent in the bathroom (T.M.I but that's what happens)

12:56pm – Upper shoulder pain begins…cramping still continues in stomach

1:15pm – Back begins itching

1:40pm – Back to the bathroom

2:26pm – Chills begin

2:29pm – Lower back pain increases and travels down my legs radiating in my joints all the way down to my ankles.  

 

2:53pm – Short of breath – using heating pad for back pain (Took 2 Benadryl)

3:14pm – Nausea & Itchy foot rash flares up

4:07pm – Chills continue. Brain fog setting in as well as headache

4:00pm-6:00pm – Rested with heating pad (Took 2 more Benadryl)

6:30pm – Stomach swollen to twice it’s normal size – sneezing begins as well

8:00pm – Short of breath again (2 more Benadryl)

10:15pm – Restless leg syndrome going crazy – whole body achy – very exhausted but insomnia (Benadryl)

Second Day:

Woke up with burning scalp & Pounding headache 

Legs still pretty shaky

Lower back and Joint pain are gone in return:

Stiff neck 

Fatigue 

Sores in mouth 

Any sound or light irritates me (not a great side effect with 4 kiddos)

No appetite 

Symptoms lasted until 7pm of the second day then energy gradually begins to return, appetite returns with a vengeance.  Headache subsides first and then by midnight burning scalp begins to fade away.  

Alas, I have survived yet another glutening! Hopefully I will avoid this rookie mistake next time.

I kept track of this experience for my own good, but thought I would share it because many of you may know people with food allergy issues.  Maybe you can be an advocate, or at least a friendly face when others get annoyed with them for asking a million questions before ordering their food, or asking what ingredients a pot-lock dish was made with.  You might be able to give them an ounce of patience because you now understand that for some of us, one misstep, as small as a french fry, will have two days full of consequences.  If you have a family member celiac's the best thing you can do is let them get lots of rest during the process, try not to get frustrated with them (we are frustrated enough) and help them not to beat themselves up about it.  I have talked to Celiac's who have been gluten free for 10 years and even they get glutened, accidentally, every once in a while.  All of us hate it, but we can deal with it and learn from it each time.

I would love for you to share your experiences with me in the comments below!

Disclaimer:   I do not have any medical training in food allergies and this is a record of my own personal experience with gluten.  No two people are exactly alike in either their reactions or their sensitivities to food allergens so you may find that others have a very different experience and that they may be able to handle more or less than I can. Also, I did not write this so that you would feel sorry for me and what I go through.  I wrote it to be educational.  I love being gluten free because it has given me my life back.  Having to deal with 2 days of sickness is just part of the learning process for me right now.  I hope that it can be a help to others going through the same process. Thanks for reading!