My first experience with gluten poisoning

Good day Dear Readers!

The last two months have been an amazing journey of health, learning, and paranoia… This post will be a bit long, and for that I apologize… But it’s important for you to understand what this particular episode of my life has done to and for me… So I ask your indulgence as you read through it… For those who don’t understand what gluten can do to someone who simply can’t have it, here’s the answer you’re looking for… Ready?  Here we go…

Over 2 weeks ago, I found a jar of gluten free mayonnaise… I was so thrilled that I threw it in the cart and took it home… I used less than a cup to make deviled eggs… I usually eat one whole egg a day for my morning snack… Low fat, high protein, etc… I made them and continued with my week… By Wednesday I noticed a very slight difference in my body, but didn’t think too much of it… But Friday, I knew something was wrong… I was having blood, and other things with almost uncontrollable diarrhea…  Sunday I started analyzing what I’d eaten… I make most of my own food so it wasn’t hard to narrow it down… When I thought about the mayonnaise, I went and got the jar and read it… Sure enough, in two locations, was white distilled vinegar… (For those of you who are unaware, white distilled vinegar is one of those gray areas because we simply can’t know what the original ingredients were, prior to the distilling…) I was so pissed that I wanted to throw the jar across the kitchen… So I shut things down, took myself to a bland diet and hoped I could get myself through it… I ended up not going to work the following that next Monday thru Thursday… I was able to go Friday but I was so weak and made many many trips to the loo…

That weekend I thought I had it beginning to be under control… (We’re now over a week into this…)  Monday, I went to work and felt ok… Just tired and still not eating… Monday night I was laying down when I got a very sharp pain down the left side… Think about your body… If you look down and run your finger from under the ribs on your left side down to where it meets your hip bone, you’re following the basic trail of your descending long intestine… By 2 a.m. Tuesday morning, I couldn’t stand the pain anymore… I debated whether I wanted to call an ambulance or drive myself… I finally made the decision and drove myself… I filled up the food bowl and water bowl for the fuzzies, grabbed my toiletry bag and headed out… I got to the ER about 4:50 a.m. and checked in…  They did a CT scan and decided I had pancreatitis… (Which, if you know anything about where the pancreas is in the body, made no sense at all!)  I spent the next 11 hours waiting for them to find me a bed… In that 11 hours I had no water, no food, and no IV bag… They had put the IV in, but they didn’t have anything on it… The other thing that really pissed me off was they put me on the FAR side of the ER as far from the bathrooms as they could… I requested to move closer because of my condition to which she responded that there was no room… Oh, did I mention that there was only three of us in the entire ER and the other two were in the same room together???

11 hours after I got there, they finally found me a bed at their downtown location, put me in an ambulance and took me down there… Now, I’m still in pain, I’m very hungry, and was sooooo not where I wanted to be… They put me on a bland liquid diet, which was fine… So we’re now into Tuesday night… Wednesday morning one of the GI docs shows up and tells me that they still think it’s pancreatitis, but they’re not sure now… My blood work shows that my white blood cells are way up, which I fully expected and told him so… I explained about the gluten poisoning which he kind of blew off, as I figured he would… For lunch they gave me a regular meal.. I ended up eating only half of the teeny chicken breast and the orange jello… After lunch they decided that they wanted to do a colonoscopy… I told the Doc, “I wish you’d said something 2 hours ago, you could have done it then before I had the damned chicken!!”  He said they hadn’t thought of it… (Thanks dude, seriously…)

So back to the bland liquid diet for dinner and then the Nurse appears with not just one prep for the procedure, but two!!!  NOW, if you’ve never had “prep”, let me try and explain it to you… First of all, it’s a gallon of liquid and you have 4 hours to drink it… Ok, that’s not bad… BUT it’s the taste… Try to imagine very warm salt water, with MASSIVE amounts of salt in it, and then add the worst flavor ocean water you can imagine to it… Some of them are so bad that you have to have anti-nausea medication to even drink the stuff!!  So now this Nurse walks in to two of these things…  Now in the last 48 hours I’d had nothing but a liquid bland diet and half of a small chicken breast… That’s it!  At home, I would have been allowed to eat whatever I wanted and would have only had to do one prep… There was NO way I was doing two of them… Never mind that my long intestine was still in quite a bit of pain and this prep was going to tear it apart!!  They called the doctor and he agreed that one would be enough… So the fun begins…

I start drinking it and within an hour I’m doubled over in pain, nauseous and almost in tears… I asked the Nurse for pain meds which she brought immediately.. The second she hit the plunger I almost threw up on her… She’d given the med too quickly and it was all I could do to make it to the bucket… They gave me another anti-nausea med and left me to do what I needed to do… For the next three hours I was in tears, almost throwing up and running to the loo… They wanted me to drink the whole gallon, but that was not happening… By 11:30 I’d had enough… There was only half of it gone but I just couldn’t take anymore… I turned off the lights and went to bed… I couldn’t sleep; I was in too much pain… Just as I feared, the prep tore my intestine apart!!  3 a.m. I asked for another shot… This time the Nurse (who I ended up really liking) took her time with the shot while I sat there and rambled on for about 20 mins… LOL  I didn’t realize I’d been rambling until I asked her how much longer it would be and she told me she’d finished the shot 15 mins prior!  LOL  It really made me loopy!!  My procedure wasn’t scheduled until 10:30 the next morning, so food was out of the question…

As I prepared for the lovely procedure, a friend of mine asked me to ask the Doc something… So as they brought me into the room, I met the Doc and told him I had a request… Oh, he said… I said “Yea, they want to know if since you’re going to be up there anyway, could you please spackle the rough spots”…  Without blinking an eye he answered “I think we’re out of crack spackle!”   I did NOT expect that answer at all and it was classic!!  I told him that I didn’t normally let guys do things like this to me, without a flower or dinner… He said that it’d have to be a raincheck because he was married… He waved bye-bye at me but I wasn’t going to go that easy… I kept trying to stay awake and engaging the crew… But, as I knew it would, the anesthesia hit me like a brick and out I went… I have this distinct impression though that I talked all the way through the procedure!!  LOL

Soooo they come back to me afterwards and tell me that they think it’s colitis and not necessarily pancreatitis… To which I wanted to respond “REALLY?!!?”  Sheesh… So they put me on a few more IV drugs and saline and call it a day… I got my solid food back, which I really didn’t want… (Most folks are starving after those procedures, but I tend to not want to eat for 10 to 16 hours afterward…)  I nibbled and tried to get back to something decent in my stomach… So now we’re on to Friday when they finally decided to send me home… I was so thrilled to just get home that I didn’t care… A friend came and got me, drove me to my truck, I stopped and got a few meds filled and hit the house… The cats were so happy to see me, for me to refill their food bowls and reassure them…

Like an idiot I tried to go back to work Monday… (We’re now over three full weeks in to this…)  Now I’d been able to work while in the hospital… A friend brought me an iPad and I created my own office in the room, which the Docs thought was funny… So I was up to date on everything, but felt like I needed to show my face… Bad idea… I ended up staying home the rest of the week… But here’s where the hard part of the recovery always comes for me… I shut down from eating… I want to eat, but my brain just won’t let me… I saw my GI the following Thursday and during those two weeks, I’d already lost almost 20 pounds… The brain just won’t let food pass the mouth… I finally started finding some foods that I thought I could handle, but the body said “Nope, not yet honey…back it down…”   *sigh*   So now it’s Sunday, my energy level is not even on the floor, it’s down under the dirt… My “meals” consist of several one or two bite meals… A cup of apple sauce here, 1/8th of a cup of rice there, a dozen pieces of Chex cereal here, half of a small chicken thigh there…

A week after my appointment with the GI, I had one with my Primary Care doc… Her first question was “why are you here?”  I told her it’s because the hospital TOLD me to be there… She wasn’t sure what to do with me and started reading through the hospital notes… OH, I clean forgot to tell you… During my appointment with my regular GI, he asks ME why they put me on antibiotics in the hospital… Uummm, because the two visiting GIs (who ALSO work with my GI) told me to???  So my Primary Care doc is looking through my bloodwork and gets it in her head that there’s a test missing… She has them take three vials of blood, at which point I told her that I already knew that my potassium, iron and sodium were very low… Sure enough, they get the results back and GUESS what they found… Duh…

So, let’s fast forward now 3 weeks… I’m still down 30 pounds because the eating still hasn’t come back fully… Two weekends ago the appetite finally started coming back, but the intestine is going to take a long time to heal and therefore I’m still eating very very small meals and not very interesting ones… Small doses of cottage cheese, cheese sticks, small cups of peaches, Ensure vitamin drinks, small portions of gluten free pasta with bland tomato sauce, and an occasional egg… That’s pretty much my daily intake a day… The jeans are baggy as hell, but I don’t really care… I’m happy to be out and about, even though my energy level is still very low…

So all of this came from a small amount of gluten processed over 5 days… The hospital stay will cost me close to $15,000, not to mention what it’s costing me for everything else… My house is a disaster because I simply don’t have the energy to do anything… I put in one load of clothes in the washer and cleaned out the litterbox and I had to lay down afterwards… I’m not sleeping well because my body gets active late a night… So sleep comes in fits of an hour, maybe 90 mins followed by an attack… The attack will last about 30 mins with a bit of pain but a huge amount of pressure… So little eating, no serious sleep, and no nutrition replacing what I’ve lost…

Another note about what’s gone on the last 2 months… I was making some strides forward with the recovery… I had two Docs who recommended I get the annual flu shot that my Agency hands out… I didn’t think it was a good idea, but went ahead and got it anyway… It really pushed me back… I ended up staying home from work that Friday, and just hoping that I could get it back on track by Monday morning… I’ve taken the shots before, but my body’s never been this far down immunity-wise and it was a mistake to take it…

So all in all I guess you could say that I’m a first class mess!!!  AND I’m not done… About three weeks ago, I noticed that my cat, Beep, was suddenly much thinner than I remembered… I was petting her and felt her spine!  I started paying very close attention and realized that she wasn’t eating!  I took her to the Vet where she ended up staying over a week! At first they thought it was pancreatitis (yes, note the irony there), but the blood/urine/x-rays don’t hold that up… The Vet’s not sure what’s going on, but Beep was being syringe fed because she still refused to eat… She’d lost over 10% of her body weight at that point… We put her on steroids and it took me over a week before I could finally find something she would eat! So on top of having to deal with my own illness, my poor Beep had been languishing and I wasn’t even aware of it!!

There’s another side to this episode: the paranoia… Because of this single jar of mayonnaise, it has forced me to go back into my pantry and my frig and analyze every single particle of food in there… I have contacted companies and requested their “origin” list of where their vinegar comes from… The company I bought the jar of mayo from has it on their website that their vinegar’s origin is “corn and rye”… Well of course corn is GF but rye most certainly is NOT!!!!  Thankfully the other companies that I have been using over the past year to 2 years use other origin products… And for them, I am truly thankful!!!  In my next blog I will be going over the companies with GF products and rating them for any of my readers who are curious… I think it’s important to put this information out there, lest anyone else have to go through what I’ve gone through… But this whole thing has made me angry to a certain degree… Someone made a comment to me that I can’t go through the rest of my life reading every single label, to which I replied “I HAVE to… It’s not an option…”  I realize that they didn’t and still don’t understand… And that’s fine… But yes, I DO have to read EVERY single label… I don’t have a choice… And for those who still think I do?  Go back to the top of this blog and reread it, ’cause you didn’t get it…

As the time goes by, folks tell me I look better so I must feel better… I let them think that because it’s easier than trying to explain to them that the recovery is a very slow dance… It will take me several months to finally be right… Here I am, over 2 months out and I’m still just nibbling food… I had a set back this very weekend, as a matter of fact… I’m not exactly sure what brought it on, but it’s there… So I once again step back, and get back to basics… Folks don’t understand that this isn’t a cold or flu that passes and you get over it… It’s a slow walk… Every day is a struggle for me… Some days are better and I revel in those!  Other days are not, and I have to sit back and wait for them to pass… Beep and I will continue our progress and enjoy our time together in it… And hopefully soon, the recovery will reach a point where I no longer have to pay attention to every single little bit that goes in my mouth… Oh I will continue to read labels… And I’ll continue to make as much of my own food as I can… But hopefully soon I can get back to feeling normal… Where I don’t have to have small amounts of food spread across my desk in order to make sure I 1) actually eat and 2) have whatever it is my body wants at that particular moment, before the moment passes…  Soon…

Boy, life just whizzes by, doesn’t it?

Good day, Readers!  It’s been forever since I updated anything and I do apologize for that… Work has been nuts and non-stop!  My health overall hasn’t been bad… At least until this past week… As careful as I try to be, dear Readers, yours truly got “glutenized” this past week… I got myself into some, what was supposed to be, gluten free mayonnaise… But as it turns out, is not… “But Storm, if the label says Gluten free, shouldn’t it?”   Well, yes, it “should”… But it included white distilled vinegar, which is a gray area for many folks… If you read the webpage at this link:  http://celiacdisease.about.com/od/Gluten-Free-Condiments/f/Gluten-Free-Vinegar.htm  you’ll learn a little more about why I say it’s a gray area… But I can tell you, it’s not gray for me!!!

My first indication was pain in and through my long intestine and colon… Now, if you’re unsure where the long intestine is, I can tell you with absolutely no trouble at all!!  But the pain started Friday afternoon… Followed by very loose, well, ya know… I realized by Saturday morning that I wasn’t going to be making any trips anywhere… It took me until Sunday morning to finally nail down what had caused me to have this reaction… I home cook about 85% of my meals… So I KNEW what was there… I had two meals out, at locations that I’m very familiar with, and have never had issues with before… The only new item in all of this, was the mayo… And I take partial blame for this because I didn’t read the label… I should have… And have learned that lesson well…

So I stayed home today to try and get some rest (ha, yea like that happened), make sure I’m eating what I can, and make sure I was close to the loo…I’m hoping to make it back to work tomorrow, but I won’t know that until I get up in the morning…

The other difficulty that I’ve been dealing with, is trying to sell my motorcycle… Everyone wants a bike with low mileage but no one wants to pay the price for it… So my bike spends week after week on Ebay, just trying to get it sold… It would help me financially if I could get it sold… BUT it is what it is… So I continue on…  🙂

Other than that, life is good and I can’t complain!  I have good friends surrounding me, and good work to look forward to every day… My Fuzzies are healthy and happy!  So there’s not much else I can say, ya know?

I hope this finds you all doing well!  I hope everyone has got what they need in life!  Love, Luck and Lollipops!!   🙂