Thursday, June 3, 2010

Live Blogging from a Gluten Attack

.....except not really.

The attack happened yesterday, from a beloved restaurant I've never had any trouble with before. And wasn't malicious - I don't even bother to mention my celiac-osity to them because I didn't even think there would be a problem with cross contamination. HAH. Won't be making that mistake again. It was vicious, as if they poured flour straight into their guacam - oop, see, I've already said too much. But any future orders from that place will include the words "WHEAT ALLERGY" right in the instructions so no more attacks will happen.

This was the worst gluten-ache I've had since I started the diet. People often ask what happens if I accidentally ingest gluten, and it's hard to answer. When I was eating it all the time, I got so used to the stomachaches that I wasn't really realizing I had them. I can remember constant stomach pain, and I can remember being exhausted after eating. And I used to get sick a lot more often.

I saw an opportunity through the attack to blog about my experience, trying to give people some sort of information about why celiacs INSIST on following this crazy, inconvenient diet. I decided this of sound mind, when I could feel the attack coming on, and decided to start blogging as soon as I got back from the grocery store - a cherry coke is usually the only way I can soothe my poor tummy.

Halfway through the ten-minute drive to the store, I'm sweating and slouching over from the pain. By the time I made my purchase and got back home, I was only able to scrawl out a few notes of what was going through my mind on a pad of paper. Now, 24 hours later, I will try to decipher them for you:

1. "green stomach"
I'll let you just think about this for a second... yeah. I visualize what happens to my stomach, and in my mind, it's clearly turning green. This happens at the beginning, when I'm starting to recognize that my pain is from an accidental gluten ingestion.

2. "dishrag stomach"
Another visualization as the pain increases. It's a very specific pain, and feels as though someone is trying to wring out my stomach, like a dishrag. It's a bizarre, twisty feeling that is very recognizable and much worse than run-of-the-mill indigestion or monthly menstrual cramps.

3. "gagginess - preparing for vomiting"
Although I have yet to throw up from a gluten attack, it's always bad enough that my body keeps this as a good option to take. My stomach goes to work coating my esophagus, just in case. I can feel it at the back of my throat, which sets off my gag reflex pretty consistently.

4. "gassiness"
Self explanatory.

5."unusual midsection noises"
As if my stomach were trying to actually vocalize something, like, "This is not my normal digestion process, because antibodies are screaming at me and I can't get any work done!!"

6. "achy joints and muscles from trying to stop pain"
The pain starts at my stomach, and constantly feels like it's getting bigger. My entire body kicks in to try and keep it contained to my stomach, and the stress eventually makes everything ache, kind of like I'm having an onset of the flu. It's getting pretty bad at this point - so much so that even my handwriting is getting worse.

7. "tired and cranky"
I've obviously written this after I've put myself on the couch. While sleeping isn't easy in this condition, it's something my body orders me to do. The one thing my brain keeps telling me is to shut down my system for a while so healing can happen before I reboot and try again.

8. "chills and worse pain"
This is the last note. I pulled a fleece blanket out from behind a pillow on the couch and shivered in front of the TV.

So the good news is that this whole process takes anywhere from two to three hours. While it's awful the whole time, it's not enough to derail my entire day. But it does make me pretty nonfunctional, and the most incredible thing I keep thinking of is that for 15 years, I lived with these symptoms EVERY DAY.

I'm not writing this for pity or sympathy - like I said, the fault is really mine for not clearly communicating my dietary needs. But I think it's important to try to spell things like this out to people who can't quite understand, and especially to people who are skeptical that food intolerances even exist. (Yup, they're out there.) There are celiacs currently living with the condition that don't know it, and that have symptoms even worse than this. Living with this disease for years can make you a tired person with little energy for anything. Living with the disease for decades can cause people to suffer neurological symptoms like migraines and even seizures.

I'm fine today - if anything, the relief that goes away after an attack is enough to propel you into a fabulous mood.


Lisa said...

I know you said this is probably one of the more manageable food allergies you can get, but given that bread is sort of a lifeblood for me, I would die. Reading this only cements my conviction.

I'm amazed at your strength. And I kinda hate that it's almost becoming old-hat for you because no one really deserves food allergies. Girl, you are a trooper.

Stacey said...

That's just terrible! Maybe you could contact the management? It could be a training issue that they could follow up on.

A New Leaf said...

Nah, it's my fault. I didn't specify any sort of wheat intolerance, so if they chose to change up the recipe of anything on that particular day, there would be no reason to notify me.

@Lisa - it really does get easier, I have to admit. When you finally link a food to what's been making you sick, cravings for that particular food go away FAST. (Everything, in my case, save flour tortillas and panini bread, and even those cravings aren't that huge.) Though I do appreciate the support, from both of you, actually.

Stacey said...

This isn't quite on topic, but have you seen that Amazon has a gluten free store? I can't find cream of rice anywhere, but they have it!

Anonymous said...

I saw Cream of Rice, next to the Cream of Wheat, at Kroger the other day if you have a Kroger. It was in the cereal aisle.

Anonymous said...

Everything you just said word for word us me! I just had an attack, the first one since I realized I was gluten intolerant and stop eating foods with gluen! I discovered this about 4 months ago and just like you, I can't believe I lived with the pain day in and day out for 25 years! My gluten attack today reminded me of the intense pain and stress my body would feel every single day!!!! The cramps, the sweating, the shivers, the nausea, the irritability... Everything you
Mentioned all came back to me today, and opened my eyes! I am currently laying in bed despite the sunny gorgeous day it is today, my body is feeling sluggish and my stomach only seems to feel better when I'm laying down

Anonymous said...

I just had an attack yesterday and it was, by far, the worst one I've had yet with the stomach wringing, dry heaves, chills, sweats, and more. The flu-like symptoms are usually a dead give a way for me with exposure. I hope to never feel that way again. I saw my dr. today and he said I was definitely exposed. I may have to try cherry coke next time.

Anonymous said...

I have been living as celiac for 3 years. I had been living with symptoms so long that by the time I was diagnosed they moved from intense GI symptoms and anemia to more serious ones like depression and panic/anxiety and that's not even mentioning the lethargy, moodiness, and other emotional distress as I tried to get through school!

Students of mine ask a lot of questions when they find out about my intolerance and I get "oh I couldn't live without..." all the time from all ages. But it's true that you quickly lose the taste for things that don't make you feel good. For instance I never liked pizza, even as a kid, but now with a delicious gluten free crust and a cooperative pizza place, it's one of my favorites!

I love this blog entry because people ask about this stuff all the time and it is really hard to trying to explain labor pains to a man...just not possible for them to understand. My gluten attacks are a lot like this except each one involves unpleasant trips to the bathroom when it gets to the "unusual midsection noises" part and the last two have been bad enough that it did include vomiting. My students have mentioned that it sounds like a great way to get out of school, HAH, not so I tell them since it often takes me all of that day and most of the next before I am able to function at full capacity.

Anonymous said...

I have been suspicious for a little while that I might have celiac disease. Or at least a gluten intolerance. I've been gluten free for only 3 days now, but I had been feeling a little better. Sadly, as I write this I am in the midst of exactly what you just described. An attack. Stomach pain, nausea, strange noises, gas, and now I am shivering to death on the couch. It's miserable! I'm trying so hard to figure out what could have done this. It almost feels like food poisoning! But everyone ate everything I ate and they're all fine! Sigh. Think I'll definitely be calling my dic on Monday.

Rosy-cheeked Chef said...

Thank you so much for your posting....I am 25yrs old and was diagnosed with IBS-D last fall and selfdiscovered gluten sensitivity because I knew it was food related. I have been on a gluten free diet for 7 months now and I have to say I completely agree with you. By the time I saw a dr last summer for my illness I was sick all the time, had stomach aches all my life with no explanation besides the usual lactose intolerance. Well being gluten free now makes these stomach and gluten attacks all the more painful. How i dealt with them before i dont know. I am having one right now which is why I came across your blog. I was looking for someone with the same symptoms. Last night was my bday and was given a icecream cake for my bday (bad choice #1) then went out for sushi (bad choice #2) even though I told them my sensitivity i swore that the imiation crab meat would not be a problem. Well last night my stomach hurt as it usually does at first contact, and 12 hrs later I am now doubled over in pain and runnign to the bathroom. Sorry..TMI....But i needed to find someone that understood...I am 1.5hrs into the typical 3hr attack....prayers for quick recovery!!!

Anonymous said...

I have just started a gluten free lifestyle 4 days ago. I have been struggling with digestive issues for at least 10 years. I was told I have IBS but I think it goes beyond that. So far, I am feeling ok.. a little wince here and there,but nothing like that attack I had 5 days ago. I know my family can't understand this cycle.. how I get so sick that I can't leave the house and then so tired afterwards that I can only sleep. I have been self medicating myself for years with immodium,advil liquid gels and a heating pad for my stomach and lower back. Since my 4 day gluten free lifestyle, I have learned that Advil liquid gels contain gluten, hoping I will find a new pain reliever. I am sure I will. Anyway, I wanted to show support and let you know (as I am sure you already know), you do not suffer alone. It is going to take me some time to make all the adjustments I need to make but I know it is a learning process but for right now, I am doing all I know (and all I learn) to avoid gluten! Good luck to you and keep up the good work.

Anonymous said...

Thank you so much for writing this! I have been suffering from these 'gluten attacks' for the past few weeks and couldn't figure out what it was as it doesn't feel like the way I used to feel before becoming fully gluten free.

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