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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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RebeccaMSL

Need Help! Suggestions For When Poisoned!

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I have celiac (diagnosed with blood test and biopsy)and have been gluten-free since 2005, so 3 years gluten-free. I also have Type 1 diabetes and am on an insulin pump, and have sjogren's syndrome, and hypothyroidism. Needless to say, things are complicated. HOWEVER, I am noticing that each time I get gluten accidentally, I have an episode of sickness that is even worse than the last. My most recent incident was after eating out at a high end restaurant, where I was assured there was no gluten in my food, and that the chocolate "flourless" cake was just chocolate and butter and sugar...no flour...ANYWAY, this most recent episode involved the WORST nausea I have ever had, vomiting, and diarrhea, and fainting while getting sick. I also sweated and sweated and sweated, and soaked my clothes with sweat, and my heart pounded and pounded and I literally thought I was going to die. I would have called 911 but I could not get up off the bathroom floor. I could not even wake my husband, or even stay on the toilet while getting sick, because I would start fainting and have to lie on the floor. I have never felt so awful and powerless, and I know this is gross, but maybe someone out there knows what I am talking about??? I asked my endocrinologist who I see every 4 months, about this severe reaction and he checked with his celiac experts and said this is not that surprising. And then had no advice for me on what to do if I get gluten poisoned again. I was sick with diarrhea all the time before I was diagnosed but I never ever thought I would be this sick when I got gluten now being gluten-free... I maybe would have made a different decision???I don't know...Obviously my immune system is completely crazy given all my auto-immune illness. Believe it or not, I work FT and am a MOM and a WIFE, and I NEED some kind of game plan for next time this happens. What do people do? Is there a way to vomit before one gets this sick so as to avoid the hell I just described? I hate vomiting but would it be better to take Ipicac than be so sick? Would Pepto Bismal help this severity if I took it before I went out to eat? I am panicked about eating outside of my home now, and take food with me everywhere, and I do my best, but I need some kind of PLAN for if this happens again. I cannot do this again, as it was the other night. I just can't. Is there ANYTHING I can take if I think I got poisoned? Is there anything I can do aside from just get thru it? I can't go thru that again. Should I call 911? What would the hospital do for me? I work in an ER in EMH so I sort of know what the options would be...get an IV and be not at home while horribly sick...But, Would getting compazine or phenergen rx help? What do people with this severe type of reaction do??? Just knowing I have a plan in place for when/if it happens again would do a lot for my anxiety about eating food I did not cook and prepare myself. Thanks to anyone who can offer some suggestions for even just an "I KNOW" would help me...

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I sure do wish I could tell you of something that would help or make the process go a bit quicker. Unfortunately I haven't yet found anything that helps except letting stuff run it's course. I also get the same violent reaction that you do and one piece of advice I do have is to carry your cell or a portable phone into the bathroom with you when this happens. I live alone and the last thing I want is to be found dead with my pants down in a pool of blood next to a toilet full of ......well you know. When my tummy starts to rumble I have learned to always grab my phone, just in case. I hope someone can be a bit more helpful than I have been. Since I haven't found anything that helps I use prevention by avoiding any possiblity of CC but of course this means that I haven't eaten out in years.

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I have celiac (diagnosed with blood test and biopsy)and have been gluten-free since 2005, so 3 years gluten-free. I also have Type 1 diabetes and am on an insulin pump, and have sjogren's syndrome, and hypothyroidism. Needless to say, things are complicated. HOWEVER, I am noticing that each time I get gluten accidentally, I have an episode of sickness that is even worse than the last. My most recent incident was after eating out at a high end restaurant, where I was assured there was no gluten in my food, and that the chocolate "flourless" cake was just chocolate and butter and sugar...no flour...ANYWAY, this most recent episode involved the WORST nausea I have ever had, vomiting, and diarrhea, and fainting while getting sick. I also sweated and sweated and sweated, and soaked my clothes with sweat, and my heart pounded and pounded and I literally thought I was going to die. I would have called 911 but I could not get up off the bathroom floor. I could not even wake my husband, or even stay on the toilet while getting sick, because I would start fainting and have to lie on the floor. I have never felt so awful and powerless, and I know this is gross, but maybe someone out there knows what I am talking about??? I asked my endocrinologist who I see every 4 months, about this severe reaction and he checked with his celiac experts and said this is not that surprising. And then had no advice for me on what to do if I get gluten poisoned again. I was sick with diarrhea all the time before I was diagnosed but I never ever thought I would be this sick when I got gluten now being gluten-free... I maybe would have made a different decision???I don't know...Obviously my immune system is completely crazy given all my auto-immune illness. Believe it or not, I work FT and am a MOM and a WIFE, and I NEED some kind of game plan for next time this happens. What do people do? Is there a way to vomit before one gets this sick so as to avoid the hell I just described? I hate vomiting but would it be better to take Ipicac than be so sick? Would Pepto Bismal help this severity if I took it before I went out to eat? I am panicked about eating outside of my home now, and take food with me everywhere, and I do my best, but I need some kind of PLAN for if this happens again. I cannot do this again, as it was the other night. I just can't. Is there ANYTHING I can take if I think I got poisoned? Is there anything I can do aside from just get thru it? I can't go thru that again. Should I call 911? What would the hospital do for me? I work in an ER in EMH so I sort of know what the options would be...get an IV and be not at home while horribly sick...But, Would getting compazine or phenergen rx help? What do people with this severe type of reaction do??? Just knowing I have a plan in place for when/if it happens again would do a lot for my anxiety about eating food I did not cook and prepare myself. Thanks to anyone who can offer some suggestions for even just an "I KNOW" would help me...

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:angry: Sorry about the double post. I'm still trying to figure how to use the new computer so my reply was not included.

The nausea, vomiting and DH are the bodies extreme way of ridding your body of the gluten but it's dangerous because you risk dehydration or a rapid drop in your blood glucose levels. You could/should go to your doctor or endocrinolost, whoever is sympathetic to your needs, and ask for an antiemetic like Compazine sublingual tabs. You would keep these in your purse and medicine cabinet and use them at the first warning of nausea. Hopefully the tablet would dissolve under the tounge and be absorbed fast enough to stop the vomiting. Another choice would be phenergan suppositories but that may be useless if you expell them before they are dissoved and absorbed. I can't imagine that your doctors would be unwilling to give you a RX for these.

I've been looking through this site for a golden bullet but it seems like everyone is looking for one too. Ginger tea helps a little. Brew 2t grated ginger in about 11/2 C water for 5-10 min and drink it. I used a food processor to grate an entire root and then store aliquotes in the freezer. Peppermint tea is also soothing as are enteric coated peppermint capsules. I always keep these in my purse. I've noticed that other people use probiotics and I use them too. They won't stop the pain but they may help the gut recover at least. My favorite is L. reurterti and I take 2 capsules, not pearls, once a day. Activia is not bad either but it is loaded with high fructose corn syrup and some flavors are not gluten free. I don't think there is anything you can do once it gets past the stomach except wait it out and stay hydrated. Sometimes I panic and eat nothing but meats, fruits, vegetables and gluten-free nuts for a few weeks and I always feel better for it.

Anyway good luck and at least try getting a RX for the antiemetic. It's at least a shot.

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I was diagnosed about a year ago and since then I have been trying to figure out how to short circuit the time that I am down and out from an accidental gluten experience.

I discussed this very topic with my rheumatologist not too long ago. She mentioned that there are some studies out there that show that scientists are finding more commonalities between immune responses (i.e. celiac) and allergy reactions (i.e. being allergic to peanuts and eating one) than originally thought.

While celiac isn't an allergy, some anti-histamines might alleviate the problem for you. We developed a bit of trial and error system for me. Last time I took Zyrtec when I accidentally had gluten and while I still had many of my symptoms, I'd say the time I was out was reduced substantially. I also have a prescription for prednisone and some other items, but given that the Zyrtec worked for me, I don't want to mess with the steroids.

However, saying all that, you need to work with your medical team to find the best solution for you. I

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I know this sounds stupid and really simple, but the thing that is working for me is lots of water. But I don't have D so I don't know if this would be any help for people with D. Seems like water and food are helping me cause they dicrease the percentage of gluten in my body. Or maybe it is a placebo I don't know. But it works for me. But I guess I am lucky since my glutening symtpoms are just terrible headache, nausea and extreme fatigue. No tummy problems. So sorry to read these stories. Maybe a detox tea would be some help?

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ANYWAY, this most recent episode involved the WORST nausea I have ever had, vomiting, and diarrhea, and fainting while getting sick. I also sweated and sweated and sweated, and soaked my clothes with sweat, and my heart pounded and pounded and I literally thought I was going to die. I would have called 911 but I could not get up off the bathroom floor.

My first incident like this is what sent me to the doctor and lead to my diagnosis. I didn't faint but I did think I was dying.

The antiemetic pill sounds like your best bet. And you may not be able to eat out or want to eat out, which is a real shame. My reaction is immediate, like at the table I start getting nauseous and I start burping, so I usually take a bite or two and then wait 5 minutes before eating more. That doesn't keep me from reacting but it keeps me from eating too much of a bad item.

After you are able to leave the bathroom :o you could try mint or lemon balm tea. Besides making me feel better I think it shortens the time that I feel bad. Try "Mint Fields Herb Tea" from "THe Republic of Tea" it has the gluten-free certified label on it.

~Laura

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My first incident like this is what sent me to the doctor and lead to my diagnosis. I didn't faint but I did think I was dying.

The antiemetic pill sounds like your best bet. And you may not be able to eat out or want to eat out, which is a real shame. My reaction is immediate, like at the table I start getting nauseous and I start burping, so I usually take a bite or two and then wait 5 minutes before eating more. That doesn't keep me from reacting but it keeps me from eating too much of a bad item.

After you are able to leave the bathroom :o you could try mint or lemon balm tea. Besides making me feel better I think it shortens the time that I feel bad. Try "Mint Fields Herb Tea" from "THe Republic of Tea" it has the gluten-free certified label on it.

~Laura

I am jealous that you can tell right away! :) I usually feel perfectly fine until 3-5 hours later when either vomitig or diarrhea and a horrible dizzy nauseated feeling comes out of seemingly nowhere...

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