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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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5 posts in this topic

I am wondering how anyone else with really bad reactions is treated in case of gluten exposure.  I was on vacation with my family and got a "gluten free" sandwich but the deli meat was not gluten free even though we asked.  I was then vomiting for 2 1/2 hours, became delirious, had severe pain, dehydrated, asthma attack (I have asthma) and went into shock.  I needed to be taken to the hospital by ambulance where I was then treated with nausea med, pain med and a large dose of steroid.  The doctor there then told me to take 10 mg of prednisone per day for a week (I take 5 mg daily for adrenal insufficiency as it is).  This is the second very serious reaction I have had but I think the steroid has made a big difference for me in that last time I was in the hospital for a week - this time I went home the next morning.  I am still not feeling great but at least stable.

 

Long story short I have learned to never eat out, even on vacation.  My question is: what has worked for other people who have severe reactions?  What have you been treated with?

 

Thanks,

beachbel

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I have severe GI reactions to gluten hits but do not go to the hospital.  I do not have asthma and I think that is why you ended up there and needed prednisone. That's a game changer.  I just treat dehydration with Pedialyte, which is for kids but works well for adults also.  It will re-balance electrolytes.  I find that once the offending food is out of your system from vomiting and diarrhea, things stabilize for me.  I have been gluten-free for a long time so I recover faster these days on the rare occasion that I do take a hit.  That's rare, though.....the longer you do this the better you get at avoiding it.

 

Hope you feel better soon!

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I don't eat out anymore either.  I get too sick when glutened to take that chance, though I haven't been hospitalized.  I found out recently that I get exocrine pancreatic insufficiency when glutened.  Digestive enzymes make a big difference to recovery.

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Yes, I started getting episodes of small bowel intussusception (which is a life threatening emergency) the last time I had it was after going gluten free for 6 weeks and then going out to dinner with friends to a Vietnamese and deciding I didn't want to be "one of those people", so I shared the same food as everyone else, and within 45 minutes I was projectile vomiting was in agonising pain and was rushed to hospital with intussusception again. I have never eaten gluten again (4 years) and never had intussusception since that night. 

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My daughter has been hospitalized for dehydration for glutenings.  She has Eosinphilic Esophagitis too.

 

Really it is a trip to the urgent care and getting anti nausea drugs quickly.  Usually a shot as she can't keep any fluids down.  If we miss that window of time she has needed an I.V. for about 3 to 4 days.  The recent release of the anti nausea drug wused for chemo patients has helped a lot.

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