I've contemplated sharing this, but hesitated. After my weekend, I've decided it's time. I'll try to be as gentle as possible.
I have celiac disease and I'm VERY careful. Occasionally I get cross contamination and I feel 'wired', unable to sleep. This is why, for example, I no longer eat GF pizza from a pizza place. Flour abounds in these places and my poor GF pizza is unable to defend itself. I like to eat out at non-pizza places, but it makes me nervous having less control.
For years, I've had an issue that my GI doc, Dr. S, cannot pinpoint.
Indelicate warning: (or should it be gentle warning about an indelicate topic. I might be overthinking this) I sometimes feel waste 'turning' in my pipes, waking me in the middle of the night. Sleep eludes me afterwards for a while or for the rest of the night. There's no immediate need to use the bathroom. 'Something' taveling through my pipes can just lead to pain IN THE SAME SPOT, but with no rhyme or reason. This pain is not limited to the middle of the night, but it's more irritating then. I obviously eat every day. Why is this an issue some days and not others? It's NOT gluten. It's a mystery.
There, I said it. And we all survived, right? Hoping I don't lose your readership for being so graphic.
As you can imagine, my offspring LOVE to tease me about my 'turning' issues. Let the mocking ensue: "Oh, wait. I feel something turning. I can't sleep."
Rest assured, my pipes might be messed up,
but thankfully my skin is super thick.
Dr. S, did a colonscopy in Oct of '18 or '19 (how can I not remember such fun?), one of many that I've had over the years. In my early 20's, I had my first colonscopy. Dr. R, a sweet little old man and my first GI, should've been looking at the angle presented by an endoscopy vs where-the-sun-don't-shine end. He went up my chimney instead of down my chimney, so to speak. Wrong angle, dude. My celiac disease went undiagnosed as a result for YEARS. Enter hair loss, pinkies so painful they're a useless hinderance (might not be due to celiac, but joint issues is one of the results of undiagnosed celiac).
After my '18-ish colonscopy, Dr. S: I found nothing. All looks fine. Maybe it's just scar tissue.
Me, in my troubled brain: Scar tissue? From what exactly? I retired from my work as a knife-swallowing, circus worker years ago.
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| A guy I sit for trying on Elmo last week. I feel this post calls for some cute photos. |
I was dumbfounded. I assumed this low-left, painful spot would showSOMETHING.
June of '21, while in the hotel with the boys we planned to adopt, I had an issue that surpassed 'turning'. I was doubled over. Pain in the same spot followed by unpleasantness. Couldn't figure it out. 100% not gluten as I'd brought all of our food. I laid low, but recommited to getting answers.
Next stop: OBGYN. Was this pain in my side a female part? More tests. Ultrasounds, MRI, etc. Nothing found.
Diet: I changed my diet over the summer, sadly eliminating my beloved chocolate balls, my favorite granola-like crunchy snacks, and my GF frozen muffins (unless I want to test my new microwave). I decided this, with Ed's input/help, fearing that I might be eating too much fiber and sugar. I eat other things instead. Since then, my clothes are a little loose. Maybe this is a result from eating less sugar. I promise I'm not starving myself or even dieting. I still workout daily. Also, I haven't had the 'turning' pain in a long time
Welcome to Hell: Friday night Coach and I ate out with friends. We both had a rice bowl/salad thing. It was delicious and labeled GF on the menu.
Satruday night I ate a GF Rocky Road Fudge bar from the freezer just before bed. I also have gluten RR bars in the freezer, but I labeled those bins clearly. I can smell the different flour on the GF versions. Could I have made a mistake? Anything is possible, but I don't think so.
Sunday, I woke up at 2 am. Felt nauseous. Gassy. Using the bathroom helped and I went back to sleep eventually. In the morning, I ate oatmeal but curled up in my bed for a few hours.
I texted Mini: let me know when you're awake.
I'd been thinking all week that I might drive to ND to visit her. The weather looked mild. Basketball season hasn't started yet. My gut felt a little uncomfortable, but I thought I'd continue to feel better.
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| This is the vine-like wall Mini's roomates hung up on their common room wall. There are a few butterflies mixed in, but it's a little odd. Mini doesn't care for it, but she doesn't care for her roomies much either so she isn't in this space often. What happened to posters? |
Mini said she had things to do, but she had time for a visit.
I got out of bed, still a bit uncomfortable. Went for a run. Yes, I'm crazy. I only did 2 miles. Mini and I were going to walk around the lake at ND. My mindset: movement would help move things through my system. I drove to ND, happy to experience relief anytime I eliminated some gas. I know you're all sad you weren't in my car for that hour 45 minute gas-eliminating drive. Also, I had no appetite.
We had a nice visit. After dinner, where I ate very little, I drove home. I felt OK, still not 100%. At home, I spirled downward.
I sat in the kitchen, hunched over my laptop, updating my microwave post while groaning. Reg wanted to play Smart Ass, a trivia board game. I took a pass, but almost every time he read a question in the adjacent family room, I croaked out a correct answer. Boom-ya.
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| Mini's roomate's grandma made this pillow. Hmm. I wonder if I could make something similar for Mini and surprise her for Christmas. |
I ended up puking as I was going to bed - almost 24 hours since the onset. The other end, began at 2 am. I called Dr. S's on call number at 7 am. He didn't respond for an hour and a half, by that time I'd already driven myself to the ER and was on an IV with pain meds/fluids.
The CT scan didn't show diverticulitis.
WHAT? I thought I'd get answers. The pain in my pipes? Diverticuli flare ups? Maybe they heal over by the time the colonoscopy happened, but the doc says it should still show up on the CT scan. I assumed this nightmare was the culmination of all of it. Right? Wrong. According to the docs, I either ate gluten or I had a stomach bug.
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| Jello - the only great thing about feeling ill. Am I right? Bring the sugar for this speical occasion. |
It's good news to NOT have divertiulitis, don't get me wrong, but I was ready for answers. I bought some liquid IV on the way home. Lad left work and bought me GF bagels and chicken broth, so I could have it with rice and pretend I was having soup like most people who've been sick. I couldn't eat my normal high fiber diet.
I slept 3 hours in the afternoon. Then I spiked a 100.6 fever. My instructions from the ER: seek medical attention if you have a fever over 100.4. I called Dr. S. He told me to take tylenol and alert him if my fever got worse. He mentioned that they were seeing a lot of ecoli. Huh? That's from food though, I didn't think I'd eated any bad food. Coach and I ate the same thing at the resaurant on Friday.
Fever does not indicate gluten ingesting, right? Dr. S offered bloodwork to see if I'd eaten gluten. Can you tell, I REALLY don't want to be responsible for this mess. I have to believe I didn't eat gluten. I've never had such a violent gluten reaction. *More on this later.
BTW I'm SUPER grateful for the timing. 1) We weren't out of town, tailgating or visiting college kids or being at travel ball in Atlanta, etc. 2) The worst of it waited until AFTER my drive home from seeing Mini. I can't imagine trying to manage this awfulness while away from home.
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Do you have weird ailments that your people tease you about? Ever have a doc look at something from the wrong angle? Have you gone with a 3rd or 4th opinion to get an answer? Do you love Jello? Can you recommend a good GF food for after being ill? (soups, etc.) Have you ever been stuck out of town or some other bad timing when a similar incident occurred?
36 comments:
Ugh, that sounds horrible, Ernie! I hope you're feeling better now. Celiac is a really tough disease. When do you find out the cause?
Getting stuck out if town sick - driving 900 miles to see in-laws, all of us came down with a stomach virus of apocalyptic promotions. Spent most of the first 2 days there lying on the bed or in the bathroom. I think it when we had 4 kids 8 and under with us. My poor inlaws were troopers and bought apple juice and immodium.
I have mysterious ear pressure and pain that I've never gotten answers to- there's something going on but doctors and ENT see nothing special. I'm resigned to it now.
I hope you get some answers! My daughters gluten intolerant and (which isn't nearly as bad as celiac disease) and it's really screwed up her digestive track. I can't imagine trying to eat out with celiac- there's flour everywhere !
Feel better!
Nicole - That's the trouble, I am afraid that I won't find out the source. The doctors in the ER said not an emergency since it isn't diverticultitis. Then my GI doc said I must have eaten gluten or had a bug of some sort. I would love an answer, because I think there is something more to it.
This sounds terrible Ernie. It’s so frustrating to not have any answers. I hope they got it figured out. My sister has celiac disease and is so sensitive she needs to have her own cutting board, knives, toaster oven etc. It’s so easy to get cross contamination even when careful - but it doesn’t seem like that was your issue. I’m sure your kids have a heyday mocking your symptoms & “pressure release”.
Oh Ernie, that sounds terrible!!!!! I thought for sure you were going to have diverticulitis after reading about your pain. My mom and aunt had that (surgery helped them both) and I get pain like that sometimes and feel like it's my genetic destiny. I wonder what else it could be? Have you ever done an elimination diet to see if you have other food allergies?
Ugh, so painful and frustrating! Not knowing the cause of pain is the worst. I hope things get better somehow.
Ouch and Yuck! I hope you and the docs figure out the issue soon!
I'm not crazy about the vine in Mini's room either. It seems like it would just gather dust like a fake plant. I can however, imagine someone thinking it would be a nicer and more inclusive decoration than a poster for a band or movie that not everyone likes.
Homemade apple sauce might be good for easing back into eating after being sick. You can use less sugar than the recipe calls for.
I stopped eating Jello after a high school science teacher told us where gelatin comes from.
I love Jell-O. It's delicious. Thankfully, I've never gotten really sick while traveling, but I did eat bad eggs once and wound up in the hospital on an IV because I was so dehydrated. It was really bad.
Those vines are super popular. My daughter has them up in her bedroom at home and in her dorm. In the dorm, they had bats on them, for Halloween (or did when I saw them over the weekend). Probably they'll get snowflakes or something for the winter.
I hope you feel better and get some answers. Not knowing must be the worst.
I'm sorry you're experiencing this. I hope you feel better soon. ❤️
How frustrating Ernie. I hope it’s an isolated incident and won’t happen again. I love to eat out, so I can’t imagine what a pain it is for you. Take care
mbmom - Oh, how unfortunate. That sounds awful. I don't think you were around when I shared the awful incident when we stayed at my folks' house while getting our floors redone. It was Halloween. Mini came home from school sick, and the it hit Ed and I. After we moved out a day later, my mom got it. My sisters were furious with me, as if I'd planned it. Of course I felt awful.
Bummer about the pressure in your ears that they can't figure out. That's what I don't get. In the age of modern medicine, how can things not be solved?
There is flour everywhere. I do feel better, thank you. It really was horrendous though.
Pat - It really was awful. Why the long lingering beginning? That doesn't seem to align with gluten. I feel like I am so careful, but who can say how careful a restaurant is? Even so, I don't think that's what this is.
I can handle my kids' teasing, far better than I can handle the pain in the neck that is this mysertious issue.
Colleen - As sick as I was, I perked up when my SIL told me what she thought and I was like YES, THAT MAKES SENSE . . . after I googled it. Then, NO? Seriously? I sure hope that is not your destiny.
I have not done an elimination diet. Hmm.
When I read the pain is always in the same spot, I thought of a gall stone. But I guess the pain is in the intestine. I pray you get answers soon!
We had just arrived in San Diego for a week with family (staying at a hotel.) Spent the first day at a park celebrating our nieces sons birthday. That night both girls got sick. From both ends. I was up with them for hours. When things for them began to calm down, Chuck ran into the bathroom! I spent the rest of the night helping him. I never did get sick so we figure it was something they ate at the party. NOT our favorite vacation!
My heart breaks for you...I have so much sympathy. I can't imagine going through this for all this time and NOT really having an answer. (aside from the obvious: Celiac)
So, was it E-Coli?
I do hope you are feeling better by now...you've got shit to do and no time for laying around. (I'm kidding, but not!)
I have a sensitive stomach and IBS. Once, on a trip HOME from Vegas, I had the worst case of you.know.what and spent a lot of time in the airplane restroom. It was horrible, and I couldn't wait to get home! I have to plan out my days/mornings because my belly (bowels) take priority over me leaving the house until they are ready to go. This didn't start until I was almost 50, so I'm still getting used to it.
How awful for you. I have a dear friend with Celiac Disease, so I understand. (She has an awesome blog with great resources and recipes. https://glutenfreeeasily.com/) She is extremely sensitive to being glutened. When I visit her, I eat what she eats.
Both times I was pregnant, all I wanted after delivery, for weeks after, was Jello. Beyond that, not a fan.
I hope you recover soon and find out what the heck is going on. The Not Knowing is the worst sometimes.
This sounds horrible and I'm sorry it happened to you. I don't know anything about celiac disease, but I'm sure you'll find ways to handle it. Not that you haven't been but maybe in different ways when eating out. Not eating out...?
Also, I like Jell-O and am proud of it. I am a lifelong midwesterner, so what do you expect?
Hope they find out what the issue is soon. "Yes" on getting 3rd or 4th opinion. My "wrong angle" story is I had an ongoing cough. Docs said must be GERD even though I kept telling them my stomach is fine. Got meds for reflux, explored all up and down my gastrointestinal tract with every possible tool. Nada. Finally, a CT showed lung disease. Wishing you better luck! ~annie
You might not be looking for advice but I wanted to suggest Dr. Steven Gundry’s books. My husband changed his diet after reading these books and it has been life-changing for him. After 20+ years of pain, bloating, digestion issues, multiple tests, scopes, medicines, etc, the gluten-free, lectin-free diet is finally what helped him. The change has been unbelievable. I hope you get answers and that you’re feeling better!
ccr - Thank you. I do feel better, but I am afraid of where I will be when this happens again. Might steer clear of popcorn and seeds that might cause divertiulitis because I did eat a bunch of popcorn a few days before this. Hmm. Love the guessing game.
Jenny - Thanks, I hope they figure something out too. I went ahead and paid (too much) to have the celiac panel done yesterday. I'm hoping it proves that it wasn't gluten so the doctors try to figure something else out.
But the sugar is the best part. Kidding. I do have a sweet tooth, but I know that isn't the best choice when trying to recover from this.
I refuse to google where gelatin comes from. I like Jello too much. ;)
Kara - I remember going to cafeteria type places to eat as a kid and LOVING the jello with the little tuft of whip cream on top. Bliss. Bad eggs, well that has to do some damage. Eww.
My guess is that the vines might have looked decent if they were done with a bit more effort. I'm not a fan. It's the common room, so I'd be all for each girl hanging something up - photo collage, or poster, etc. They look strange, in my humble, non-professional opinion.
I feel fine now, but dang - I'd like to avoid an episode like that again.
Kari - I do feel better now. Thanks. I live in fear of where I'll be when this strikes again. ;(
Charlie - Thank you. I am frustrated. I'm wondering if the blood work comes back and shows that I didn't eat gluten, if the docs will go back to the drawing board - but my guess is they'll just shrug. Again.
It is a pain to eat out. Even if the menu says GF, there's a chance of contamination. Some places don't have enough good options either, which stinks.
Hey - my son, Tank, will be studying in Limerick, Ireland next semester.
Cindy - Hmm, I appreciate the thought. I just googled gal bladder issues and it lists chronic diarehha which fortunately is not me. Open to ideas to help solve the mystery.
That vacation sounds HORRIBLE. I once took for four middle kids to an Irish music competition in St. Louis. Mini got sick every 7 minutes in the middle of the night and I was on my own with the kids. I was up all night and then had to drive back to Chicago, about 4 hours on no sleep.
Suz - I am feeling better, but I've realized that I blanked out on what day it was and ended up missing something that I was looking forwad to on Tuesday evening. Not gonna lie, there were tears.
The not knowing is obnoxious. When I realize that I had a similar, albeit scaled down - thank the Lord, episode in the hotel with the boys last summer - I realize that it was NOT gluten. Everything that I ate was a leftover/prepared by me and eaten repeatedly. I hope my blood work comes back proving it wasn't celiac. I don't know if it was e-coli, but I really don't think so. I supposedly have IBS, twinning, but I feel like that was a catch all they concoted when they couldn't figure out my celiac for YEARS. Ever since the celiac diagnosis, I don't have IBS like issues.
Most of my families had cancelled on Monday because grandma wanted them for Halloween or sickness. I only had to cancel one family plus my afternoon preschool kids. I kept saying it was well times but it also killed me to have a day off and accomplish NOTHING.
On a plane? I will not, Sam I am - not on a plane, not in flight - no Sam I am, I will not. Sorry about your gut bossing you around that way. That's the pits.
Nance - I need to check out her blog. I'm really careful at home, but who knows what goes on in the kitchen at a restaurant. Eating out is such a fun, social occurrance. I hate to miss out. We'd been going to a great Chicago pizza place on Christmas Eve for a few years, but I put a stop to it, because eating a salad while they eat pizza gave me a grouchy disposition.
For a few pregnancies, I ate McD's chicken nuggets. Gross. I forgot how much I enjoy Jello. I'm sad that my supply from Monday is gone. ;)
I hope they figure something out as well. I wonder if I need to watch out for popcorn, as in not exactly diverticulitis but dang close? I ate popcorn a day or two before this episode.
Ally - Thanks, it was a disaster, but could've been worse. I've had celiac for 7.5 years, so I feel like I have a handle on it. This seems to be unrelated, but I feel like the doctors use it as a scape goat. We rarely ate out for the longest time. Too pricey. Too hard with celiac. But dang - the kids are older and often times eating out with their friends' parents while visiting is the things to do.
Is Jello loving a midwestern thing? That explains so much. I didn't know.
Annie - I'm so sorry to hear that. So many docs missed lung disease? What on earth? I do hope that they aren't missing something HUGE. I really feel like this was a love level case of diverticulitis and it just didn't register on their rickter-scale.
Anonymous - I am NOT opposed to advice. Not in the least. I haven't heard of this book. I might need to check it out. I do eat gluten free, but I don't pay attention to lectins. Thanks for the info.
Oh Ernie, I feel for you!! I used to get that same kind of awful pain in my left side too. Mine started over 10 years ago, but I never went to the doctor because I have no faith in them diagnosing any kind of stomach issue.
About a week into my misery, I got a letter from Costco telling me that the eggs I'd bought the month prior had been contaminated with - salmonella? I can't even remember now. But anyway, we'd eaten them all by then (of course) and I assumed that was what made me so sick.
Since then I still had periodic flareups of what I called my 'stomach issues.' Two things helped me: I started taking probiotics every morning, and when I feel a flare coming on, I take peppermint oil. I think the pain is coming from trapped gas (to be indelicate, lol) and this helps with that and really takes away the pain for me. Now it's pretty rare for me to have any issues.
After my colonoscopy last year, I found out I do have diverticulitis so I think that is probably part of it as well.
Anyway!! All this to say that I know how awful it is to feel this way, and how frustrating it is to not get answers. Hugs!!
Wendy - Sorry to hear that you have struggled with gut related issues. Rotten eggs - that makes me cringe.
Peppermint oil? Going to look into that. I do feel like I probably have pockets in there that get bothered from time to time.
Thanks, I appreciate your suggestions and your sharing. It sure is frustrating to have doctors shrug and not know what the deal is.
Ugh, that sounds brutal. It seems really unfair that you have to eliminate yet more foods that you enjoy after not being able to have gluten. Both my kids have anxious guts and food intolerance issues, and it really sucks, although nothing like actual celiac or food allergies. We love Smart Ass - we also have Drunk Ass, but we don't play it as an actual drinking game. Or didn't before the kids could drink. Much.
Ali - It is not fun. I would hate to be somewhere or be doing something fun and then have to deal with an episode. I'm gonna stear clear of popcorn for awhile though. My doc called last night and my bloodwork showed that I didn't have gluten. Not like that solves anything, but I was weary of having docs shrug and tell me I must've gotten gluten in my diet.
I had not heard of Drunk Ass. I might need to throw that one under the Christmas tree. I grabbed Smart Ass as a sort of Christmas gift filler, never having heard of it. Jackpot.
You don't know me, but oh, I sympathize with this. I have symptoms of gastroparesis that pop up randomly. These sound similar yet different to what you are experiencing... The episodes involve severe cramping and pain (to the point where I can literally feel the cramps in my gut through my abdomen), come on whether I have eaten or not, are not predictable in any way, and can sideline me for short (i.e. 30 min) or longer (i.e. several hours) periods of time. No one has been able to pinpoint the trigger(s) but I do have an autoimmune condition so it's likely related to that.
In other words, I *feel* your frustration. I hope you got some answers from the celiac panel and that it showed your docs that it wasn't consuming gluten that caused this. I hope it hasn't come back. For me, the uncertainty and unpredictability are the worst - particularly when it occurs at inopportune times, like when I'm teaching.
Anne- Sorry that I just noticed your comment. Welcome to my blog, it's OK that I don't know you - you are more than welcome here and I am so happy to hear from someone who has a these unpredictable issues. It is the pits, so I'm also sorry that you have to deal with it.
I have an autoimmune disease too, celiac, which I guess was obvious from my post, but I do wonder if that sets off other problems for me. I met with the doc the other day and he really had no answers. $80 copay, well spent. Ugh. For now, I'm going to avoid seeds. No popcorn. I'll see where that gets me.
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