Getting Glutened

[mandigirl1]

hey everyone......just wanted to share this experience I had last week while being away Easter weekend, in Arizona (Im from NY, FYI).

I had the most severe attack Ive ever suffered in the 8 years that I have celiac disease. It was as painful as when I first was diagnosed with celiac disease after being so sick I needed a hospital.

OK, I was away with my fiance, enjoying the beauty of Arizona, and what I thought was "delicious South Western food"......until I had an attack 3 in the morning while my fiance was happily asleep. Symptoms: Severe queasiness, fainting, sweating, chills, constant diarrea, and terrible nausea, also pain for 24 hours straight!!! Couldnt get any relief or comfort at all!!!! Has anyone else suffered like this? Especially with the wiped out, weak, faint feeling? I felt so bad, it was difficult to even go!!! was collapsing over onto the floor, crying.....My fiance didnt realize the severity of the problem and when awakened, was there for me, but, not exactly.....His response over and over was "Come back to bed honey" as if I was putting make up on or polishing my nails!!!! HELLO!!!!! I'm dying in here!!!!!!! Hes a great guy though, just doesnt know what to do or say at times like this.

Anyway, where does this feeling come from? How do you deal with it? I think cold compresses on my face and back of neck helped a tiny bit. Then the next day I took Imodium and was feeling better......then next 20 hours I slept non-stop, like in a coma. What else can be done to alleviate this pain and suffering????? Any good advice??????

The TexMex food at the Easter party was SOOOOOOOOOOO delicious, it was heavenly. I shouldve known it was too good to be safe. I happily ate my heart out with my fiance and family, enjoying most of the "questionable" stuff, pushing the limit......telling myself...its okay, enjoy, youre away, you deserve to eat and enjoy this food too......boy, if I knew what I was in store for, I wouldnt have even given the food a sniff or a glance!

For many days after, I was weak, lethargic, depressed, moody, turned off from food, didnt eat much. What a terrible feeling to be away in the mountains, and suffer a glutened stomach explosion. I sure did learn my lesson. Im still not feeling 100%.

Whats up with the constant nausea and feeling to vomit? How do you help this?

Please, can anyone share or give advice, or even just commiserate?

Thanks, I could use it.

[Lollie]

Wow- I'm so sorry you had such a terrible experience. I have only been gluten free for 4 months. My reactions are the same as what you have described. I recently did something wrong, still trying to figure out what I did wrong. I woke up at 1 in the morning, with stomache cramps and severe nausea. I sweated with the pain. It felt like I was being stabbed over and over again. It was horrible. I just curled up in a ball and tried not to move. Finally in the morning it started to let up, but I wasn't 100%, I was very weak and my muscles all over my body ached and were fatigued. I think it was my vitamins.

I don't know why the reaction is so severe. I commented to my husband that it was as bad as when I had to be rushed to emergency to get my gall bladder out, but I knew it couldn't be that since it was already gone!

I wish I had some advice or good information. I will keep an eye on this posting, in case some good info. comes up! I hope you get to feeling back like yourself soon. And again, I'm sorry you had to go through all that!

Lollie

[tarnalberry]

actually, that sounds like food poisoning....

[plantime]

Your symptoms sound like mine after I accidently drank a malt, except I did not have nausea. I have no suggestions. I will watch this thread, in case someone does.

[mandigirl1]

Noticed 72 people viewed my comment, only 3 wrote. please, if anyone has advice, can you post it?

Its greatly appreciated!

[Carriefaith]

I'm sorry that you had to go through that

My attacks are similar to yours. I once had severe stomach pain for about 1 week. The pain came in waves every few hours and I could not predict when the pain would come. And of course the pain would come while I was in front of people away from home. I ended up locking myself in a room for about an hour until I felt better! My last reaction, however, was one of the scariest. I ate out at what I thought was a "safe" restaurant. I guess I got contaminated because I got severe dizziness (the whole room spun quickly), quick blackouts, nausea, a clammy feeling like a had a temperature, heart palpitaions, racing heartbeat, heart pain, and brain fog. I was freaking out! My doctor has advised that I don't eat food that I haven't seen prepared after that episode!

I also have a wheat allergy though whick intensifies my reactions. Have you been tested for wheat allergy?

[BoulderEm]

Yikes, that does sound horrible! I have only been diagnosed since March, and I thought I was doing so well, but something is still glutening me, and I can't figure out what. Does anyone have a good sense of how soon after eating something do we feel the symptoms? Is it a couple of hours? Or is it more like a day or two later? This could help me figure out what I ate...

Thanks! I've been following this message board since diagnosis, and its very helpful. This disease sucks but it helps so much knowing there are others out there with great advice.

~Emily

[Carriefaith]

Does anyone have a good sense of how soon after eating something do we feel the symptoms? Is it a couple of hours? Or is it more like a day or two later? This could help me figure out what I ate...

The last time I was contaminated, I got my symptoms about 17 hours after eating out.

[penguin]

I know I'm glutened within 15 minutes. I completely zone out and my face feels like I have too much powder on.

Stomach feels crappy for several days.

[evie]

The last time I was contaminated, I got my symptoms about 17 hours after eating out.

It seems time to gluten reaction varies with people,some as to time since diagnosis. it has just been a bit less than 3 months for me. my big D does not come on till the next am, am thankful for that so can get sleep.

but have stomach pain/ gas & etc all day and at times next day too. anyway it is always such a joy to have a day/ no bad tummy problems. As I read on another post gluten free diet is a pain but we feel better on it.

I just wish I could have gotten this help many years ago but just never found right Dr. Am hoping to have the rest of my years healthier than now!!! Hang in there with me!! Evie

[jerseyangel]

I always begin to get symptoms in about 2 hours. They last anywhere from 5 to 10 days.

[whitball]

I have had similar reactions. Severe stomach pain, sweating, etc. I have taken Darvocet a few times to stop the pain and it has worked. I also try to take it easy on my stomach for the next several days. I try to eat something bland, like rice cereal for several meals until the burn goes away. tara

[mandigirl1]

Thanks for the feedback.

Its so hard to say when a gluten attack will come on. Usually for me, its anywhere between 24 hours and one week.

As a matter of fact, Im sick right now as I type this. I cant move out of bed, Im weak with body/muscle aches, exhaustion, excessive yawning, and a horrible queasy feeling in my stomach, with severe nausea, dizziness with a feeling like Im going to black out. My stomach is making noises and iI havent had any diarrea (yet), just some BM celiacish.

Now, heres my problem----Im not sure if this is a celiac reaction to something I ate last night and again for work this morning (I usually eat this gluten-free chicken cutlet parm with rice pasta....its prepared in a local diner which caters to Celiacs and has a nice gluten-free menu) Right after I ate it, today, I felt lousy, with above-mentioned symptoms. I am aslo a 4th grade teacher and surrounded by germs every minute of the day. I know theres a stomach virus going around, some teachers and students have had it in past weeks.

If you saw my original post, it was about this very topic. In a way I feel like its similar to the attack I had while away cuz I did eat questionable foods. But, with this, people are telling me it sounds more like a stomach bug.......HELP!!!!

BIG QUESTION HERE IS: HOW DO I KNOW IF ITS GLUTEN AND NOT A STOMACH VIRUS??????? CAN ANYONE HELP ME DISTINGUISH THE 2, SO I CAN AT LEAST KNOW WHAT I AM DEALING WITH???????? PLEASE IF ANYONE CAN SHED SOME LIGHT ON THIS, OR OFFER REMEDIES, ID BE SOOOOO GRATEFUL. I HAVE TO GO TO WORK AT 6 AM AND IM NOT SURE IF I SHOULD BE GOING.......THIS FEELING IS SO BAD ALL I CAN DO IS STAY IN BED.

EVERYONE ON HERE HAS BEEN SO WONDERFUL AND KIND.

THANK YOU.......AND I EXTEND MY SYMPATHIES TO YOU AS WELL FOR HAVING GLUTEN ATTACKS!

[Carriefaith]

BIG QUESTION HERE IS: HOW DO I KNOW IF ITS GLUTEN AND NOT A STOMACH VIRUS???????

There are some key symptoms that help me decide if I have the flu or a gluten contamination. These are mine and they may help you decide:

brain fog

Heart problems (palpitations, racing heart, heart pain)

Rash and/or hives

anxiety

[mandigirl1]

no, i dont have any of those problems you mentioned. i stayed home from work today because im too weak to get out of bed. my head, stomach and body/muscles are killing me. im dizzy, nausea, weak and feel like i cant move. not sure what this is. dont think this has ever been a celiac attack, because then i have diarrea and now i dont.

thanks

[Heather22]

Hi Mandigirl1

I have had a similar experience to yours, except it was from spoiled food. We were camping in France, and the camper fridge died a few hours prior. Eventhough it was not gluten, I found that the only thing that worked for me is to sleep. I was carried back to the tent and slept it off.

As for when I get glutened, I do something called "protein days". I do very well on protein, so I basically only eat chicken, tuna and egg whites for the entire day. I find this helps my D and bloating. It is pretty gross and I usually feel really hungry, but it is the only solution that has worked for me so far.

Good luck!

Heather : )

[elye]

Hi, Mandigirl!

Sounds awfully like the flu to me...aches and pains all over, severe nausea. How about your head, is it aching or splitting? These are classic influenza symptoms. However, as we've seen, some of these symptoms seem to suggest accidental glutening for some. I'd still put my money on the flu, and take a gravol...can't hurt, and it settles the somach and will make you sleep. Hope this helps!

[gabby]

I hope you're feeling better by now....it could be that you are having a combination of being glutened AND either food poisoning or a stomach bug. Food poisoning can be really dangerous and it wouldn't hurt to visit your doctor if at all possible.

As for relieving symptoms....try to drink clear liquids, stay hydrated, rest, stay warm, and come back to the board to let us know how you're doing. Also, keep an eye out for any sign of a fever.

To help your stomach rest....try eating only limited 'safe' foods (i.e. plain chicken, no spices, rice, bananas, etc) for a few days.

best

Gabby

[mandigirl1]

Thank you guys for your advice and concern. Its nice to know there are others with celiac disease who understand.

Well, I stayed home from work yet another day because I just couldnt get out of bed. Feeling better than yesterday. Had plenty of bed rest and drank lots of fluids. My doctor felt that it is a virus, maybe stomach, maybe touch of the flu.....I never had diarrea, so he really didnt think Celiac.

However, I dont know if anyone read my original post about getting glutened being away in AZ 3 weeks ago, but this may have weakened my immune system, and made me highly open for catching a virus. Being majorly glutened can not help the immune system in any way. If anything, it destroys it. Plus, I am a 4th grade NYC schoolteacher and am faced with all sorts of germs daily. Its almost impossible NOT to catch anything, when 28 kids are breathing/coughing/sneezing in your face, or having to run to the bathroom to vomit. This is the sacrifice we teachers make. Having celiac disease makes it harder to stay well.

elye, you mentioned taking Gravol to help the stomach. I never heard of this before. What is gravol and where can I get it?

Thanks!

BTW, does anyone get cystic acne after being glutened? I seem to get these big, angry, red, painful cysts/sores on my face (cheeks) and they take a while to go away. Is there a way to treat this???? I also get them smaller on my shoulders and chest. Is this what DH skin condition people with celiac disease get?

[Guest nini]

I'm sorry you keep having these experiences where you feel so sick, but I'm sure so many of us can relate. I don't know that you can ever 100% know that it's truly a gluten contamination or a bug... eitiher way you just have to keep yourself hydrated, eat a bland diet until you are feeling better and rest rest rest rest rest.... I also find that besides taking Immodium, it also helps to take a Benedryl and Tylenol...

As far as the cystic acne is concerned, I don't know if that is related to glutening directly, or more likely connected to stress... my husband has really bad cystic acne that flares when he is stressed. He is also not on the gluten-free diet, so that may make it worse for him but I don't know. Good luck with it all and I hope you feel better soon.

[ravenwoodglass]

no, i dont have any of those problems you mentioned. i stayed home from work today because im too weak to get out of bed. my head, stomach and body/muscles are killing me. im dizzy, nausea, weak and feel like i cant move. not sure what this is. dont think this has ever been a celiac attack, because then i have diarrea and now i dont.

thanks

This may be gluten but it may also be something else. If it lasts much longer or gets much worse you should see your doctor. Ginger and cinnamon may be helpful. You could try to sip either fresh ginger root tea or flat gingerale and try some cinnamon toast, heavy on the cinnamon, to help ease the tummy. When sick I will also boil a chicken breast with a a teaspoon of cinnamon then drain and mix with cooked rice. It's similar to Shareeyah but without the pasta. Sublingual B12 may help with the dizzies and weakness. I hope you feel better soon.

BTW, does anyone get cystic acne after being glutened? I seem to get these big, angry, red, painful cysts/sores on my face (cheeks) and they take a while to go away. Is there a way to treat this???? I also get them smaller on my shoulders and chest. Is this what DH skin condition people with celiac disease get?

My DS and I were talking about this last night. He has 2 guys in his class that are about his height and weight and both suffer with severe acne. Myself and both my kids had severe acne and we all now have nice clear skin. It took awhile and complete diligence with cosmetics and toiletries but I now at 50 have clear skin for the first time in my life and my son's 'acne' is also gone. We both break out quickly with gluten.. You may want to go to a dermatiologist and get the skin adjacent to the broken out spots biopsied, but personally I would wait. Once gluten free you should see a differnce pretty quickly.

[Susan123]

I have had food poisoning 3 times in my life and it sounds like that. Your severe symptoms usually show up about 7-8 hours after ingesting the food. Severe cramps and can't go then you throw up etc. I will save you the gory details. Did you fiance eat the same things?

[BoulderEm]

Thank you for all of your feedback. I seem to react a few hours after eating something, and then have symptoms for 1-3 days. I'm going to just eat potatos, fruit, vegs, and meat for awhile...I can't seem to tolerate rice right now. : (

I have found that peppermint tea is wonderful for bloating and tummy aches...I try to drink a cup a day (plus it helps hydrate).

I would think if its stomach flu, you've got the other flu symptoms too...achy joints, whole body aches. I know when I get glutened, its limited to tummy and headaches/brain fog.

on a side note, how do you enable the signature function on this message board? I'd like to post diagnosis, etc....

thanks! : )

Emily

[jerseyangel]

Hi Emily--To personalize your signature, hit My Controls (near the top of your screen), scroll down on the left to "Edit My Signature". BYW--welcome!

Ha--looks like you figured it out already

[Kim UPST NY]

Hello Hey I have been trying to be Gluten free Since January of this year , I got very sick and I ended up in the hospital and thats where I was Diagnosed . But I recently like 2 weeks ago, Ate forbidden Fruit Well Ceral acctually Honey combs 6 hand fuls striaght out of the box DRY, Well I can say that was at about 11:00pm so at 4:00am I was woke up by EXTREMM cramps and the Ut Ohh I better run to the bathroom , feeling and My colon exploded, Now I felt fine after but the same thing happen 2 more nights in a row much less violent but yes Celiac is Tricky I have also acciedently done this to my self , So I hope it helps you to know your not Alone... Kim in Upstate NY