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It's Sunday and I'm just getting around to journaling. This is fairly long and I'm writing it for my own "warning", so you may want to skip it.
Yesterday, I ate a product I thought was safe and it WASN'T. It had a different flavor coating than the plain one I occasionally get (the safe one) and I didn't read the label on the new one.
I had just gotten back from my granddaughter's ugly sweater party, where I had eaten very safely, cheese and fudge (everything else had gluten). The charley horses started in my hands, then included my shins, my inner thighs, my feet and then my calves. I couldn't stretch any of them out, because that would start the cramps on the other side of whichever limb.
I haven't had this happen in a very long time. Prior to my being diagnosed with celiac's, I thought it was caused by dehydration. Once it starts, it lasts for hours and the cramping increases in length and intensity. I immediately started reading labels and found that I had accidentally ingested hydrolyzed wheat gluten. OMG!!!
I called an ask-a-nurse hotline to see if she could make any suggestions. After hemming and hawing, she admitted she knew nothing about celiac's and put me through to a poison center. They couldn't imagine why she would do that and suggested hot packs or a hot soak. At this point, my whole body was involved and it would have taken a fairly deep hot tub to have been of any use, if it did work.
I took a fairly strong dose of pain reliever (it didn't work) . . . I don't have any muscle relaxers, and tried to go to bed. As soon as I laid down, acid reflux started. I can't even remember the last time that has happened (or the charley horsing for that matter). Last, but not least, about an hour after that, severe abdominal cramping from gas started. All of this began at 9:30 p.m. and at 5:00 a.m. this morning, I was still awake and miserable.
I finally fell asleep sometime after 5:30 a.m. and slept until 8:30 a.m. My whole body feels like I've been run over by a Mac truck and I'm exhausted. The reason I am writing this is so I will never again ASSUME that just because one product is safe, that its different flavored "twin" is. I will never again put anything in my mouth without thoroughly reading the label.
The thing is, this sequence of events used to be a fairly normal occurrence . . . for most of my life, and I just accepted it as the norm. None of my many specialists ever got together and put two and two together. Now, I've gotten so used to feeling well, that this was pure torture. I don't know how I used to do it.
Diet Calendar Entries for 18 December 2011:
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1535 kcal
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Fat: 68.15g | Prot: 53.85g | Carb: 192.22g.
Breakfast: Fasting Glucose - 100, Diet Cranberry Juice, Truvia, Gluten Free Rolled Oats, Almond Milk, Smart Balance, Scrambled Egg, Coffee. Lunch: Ginger Peach Green Tea, Frozen Sliced Peaches, Uncle Ben's Natural Brown Rice, Smoked Turkey and Cannellini Bean Cassoulet. Dinner: Dinner and a movie at my son's house., Brown Rice, Cauliflower, Ground Lamb. Snacks/Other: Hersheys Heath Bar. more...
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2350 kcal
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Activities & Exercise:
Sleeping - 8 hours, Resting - 15 hours and 30 minutes, Walking (slow) - 2/mph - 30 minutes. more...
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 Comments
Sorry to hear you have had it so rough....but so glad that is not the norm for you any more....but wow....like you say a lesson learned.......I know you have to be very careful with small changes they make or new recipes...never assume anything.
18 Dec 11 by member: Yvonne19
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Ouch... that sounds TOUGH. I have never heard of this illness. Is this related to special foods or..?
And no need to warn about "writing for yourself". I like journals, no matter who they are for, and I think we essentially write for ourselves most of us anyways. I always write TO you guys, but it's essentially for myself none the less.
I enjoyed this journal, even if it was about your pains. I learned something new.
18 Dec 11 by member: kingkeld
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Oh, Bonnie, I am so sorry that happened! Sure do wish I lived closer so I could come over and help or at least keep you company. Hope that you are feeling better and able to get some much needed rest. Love you, my friend! Hugs!
18 Dec 11 by member: ctlss
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Oh bless your heart...Love and Hugs.....
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OMG... I don't know anything about this disease, it sounds a nightmare. I guess you get used to being that careful (apart from the odd slip ups) and learn through trial, error and pain. Do hope you are feeling a little more like yourself now (((hugs)))
19 Dec 11 by member: Sk1nnyfuture
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Sorry to hear you had to endure that aweful experience. It must be to put is plainly "HELL"!
Hope you are on the road to recovery now. Take care and thank you for sharing.
19 Dec 11 by member: pam-u-la
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Thanks Yvonne, yes, it's very much awareness. You have to become aware of every bite you put in your mouth. As long as you do, everything is fine.
19 Dec 11 by member: Johanne
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King, celiac's is an autoimmune reaction to the proteins in gluten, mainly wheat, barley, rye, and a few others. The problem arises when you buy processed foods that have been contaminated with any of these foods, including cross contamination on packaging equipment. A huge number of things have gluten that you wouldn't think of . . . beer (malt), wiskey, Pringles (but Stax have a gluten free label, tiny on the back), Doritos (but Santitas, made by the same company are fine), most granola bars though you may not see wheat as an ingredient. If something has "modified food starch", it is usually wheat. You really have to reassess everything you eat AND READ LABELS, even if the food has been safe in the past. Things can change with no notice.
19 Dec 11 by member: Johanne
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Stef, I could have used the company. I had forgotten how awful these attacks are and I was actually frightened. I have been told (but it hasn't been confirmed by a medical professional) that the heart muscle is different from your other muscles and not subject to charley horsing, but when you are in the middle of it, you can't help but wonder what would happen if your heart started cramping. I slept well last night, but I'm still exhausted. I love you too. Thanks for the hugs.
19 Dec 11 by member: Johanne
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Bren, love and hugs are about all that can get you through one of these attacks. I had forgotten (or purposely put out of my mind) how brutal they can be. This is the second day after and it's not through my system yet and my muscles are so sore and sensitive from the cramping. Wow! Love you back!!!
19 Dec 11 by member: Johanne
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Skinny, many people don't experience symptoms at all, but are malnourished because the small intestines aren't doing their job. This can take the road to underweight, or, as in my case, you are trying to get the nutrition by overeating and are overweight. I've had very visible symptoms all my life, but even with that, no-one ever diagnosed me correctly. My family have always thought I was a hypochondriac, but my Dr.s kept telling me AND them, you can't be a hypochondriac if there is actually something wrong. When I figured it out last year and made my GP test, everything I had been dealing with my whole life just fell into place. It made me SO ANGRY! I might have had such a different life if I had been diagnosed early on. The anemia alone has nearly killed me multiple times. My hemoglobin has been as low as 4.6, but they could never figure out what was causing it. Thanks for visiting and returned hugs!!!
19 Dec 11 by member: Johanne
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Pam, thanks. At least now, I am well most of the time and getting better all the time. I just have to be very careful not to slip. A little wheat contamination is bad enough, but this had "hydrolyzed wheat gluten". What that means is, they have extracted PURE gluten from the wheat and put it in the product. When I was at the store last night, I read the label on the unflavored can, and it is still quite safe, which means the nasty stuff was in the flavored coating on the flavored product. Thanks for reading all the way through that overly long journal. LOL!
19 Dec 11 by member: Johanne
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