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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 Celiac.com's FREE weekly eNewsletter   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 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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For a week I have been trying to determine what is wrong, it started with nausea, I took away my oatmeal, it continued, I took away my fruit, it continued, Friday, it was a fever, and ab pains, Saturday, better, but all I ate was an apple, and some shrimp.  Sunday, an all out assault on my digestive tract.  It is continuing.  I cannot eat anything without consequence.  Drinking only water and an herb tea on occasion.  The food I attempt, goes straight through.  If you want details, I will share.  But you really do not.  My upper Intestinal area will swell up, bloat up, whatever, and I burp, a lot.  then I feel the food whatever I attempt, moving down and it hurts. I bloat all the way down.  I go and I go, until whatever I attempted to eat is gone.  Is this SIBO?  Do I need to go to the doctor?  I hate doctors. Has anyone experienced this?  Will it go away?  My husband keeps saying its a bug, but I have to joke, my gut says its not bug.

 

 I totally enjoyed the Easter Bunnies jelly beans, so a lot of sugar went through my body in the prior to the nausea beginning and my son had a birthday and I had what I thought was an innocent sliver of Ice-cream cake that would pay for for a few days and be done (I will never do that again).

 

Please anyone, help if you can, I am miserable, and have kids to take care of.

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Sorry about that, but when one has a neurological episode of the like strength of reaction, including such waves of dizziness and nausea  feeling like one can't walk, and literally can't see straight or focus one's thoughts, plus your muscles are locking up, one begins to understand motivation to "not" do that again.  Whatever "that" was.  :ph34r:

 

I bet you do have a combination of some sort of virus/bacteria food poisoning intestinal bug and a gluten reaction, which unfortunately are coinciding at the same time.  I will tell you what, though, do not go anywhere NEAR something like shrimp at this time, if it is farmed shrimp who knows what grain it has been fed with, and then treated with in terms of antibiotic residues.  Does careful cleaning and rinsing get all the bad stuff off, who knows.   If it is wild shrimp, you still are risking it if it came from certain areas which have had oil spills.... :(   shrimp, when you are vulnerable, is a very iffy proposition. 

 

Herb tea ?  Make absolutely sure it is not made with gluten.   Oatmeal -  you could be the small minority of the celiac/gluten intolerant who are reactors to even gluten free oatmeal.  Oats are rough on early gluten free dieters and shouldn't be attempted until full healing has taken place.  I became sensitive to being cross contaminated with it, it only after years of being gluten free, and this has really changed my ability to safely eat most baked goods not made by me, already, because I have to use flours that are not made in the same facilities where oats are processed, or if I eat too much, I get hammered.  For example, I was checking out a gluten free protein bar recently that sounded as if it would be perfect, but further research showed that one of the flavors was an oat concoction, so there went that idea for me. It probably would work for most gluten free people, but I'd just as soon they label it as "produced in a facility with" -  so I could get a head's up without visiting the website -  which is not going to happen.

 

So you had a bug brewing, then you fed it candy sugars.... oh, my. :(  

 

When this has happened before I go pretty elemental and subsist on water, ginger root or ginger in various forms, including putting it in club soda,  decaf coffee ( I think I have the northern European coffee drinking gene which means I can be 3/4 dead and drinking a ton of it with no ill effect  :P) coconut milk, (can't recommend this stuff enough, get the canned and dilute it, by putting it in coffee or tea, or get some coconut water, too), and trying out various homemade electrolyte type solutions.  I know this sounds awful, but I would rather wait it out until it settles down, then reintroduce foods. Then I would be eating very low carb, on my "safe" foods list, which is probably nothing like somebody else's, but which agrees with me- if I can handle things like nuts and fruits, then a cooked egg, I am probably going to be okay.  

 

It wouldn't hurt to call a doctor's office anyway, because perhaps there really is a bout of intestinal illness going through your area, and better safe than sorry. There are such bad buggy gut wrenching germs going around these days, (just ask any cruise line passenger)  even normals can get knocked down quickly.   

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Sounds very familiar, I recently had a wicked bout of the "flu", of the stomach variety. Holy old crap (pun intended

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Thank you.  I tried calling GI.  May is the best they could do, put me on their cancel list.  So, I tried GP, May, looked for a new one.  Urgent care is 250 with our insurance, so I am making him my new GP  he can take me in on Friday, and that is a $50 instead of the 250 today would be as an  Urgent Care patient.  I think I can hang in there another 48 hours.  I have lasted this long.  I have a great hubby, and I am following Takala advice.  It really does not feel like the flu, it really feels like its all in my intestines.  

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Being treated for IBS, but he is sending me to the lab for a full work up and then on to the GI.  It is not the flu or a virus, but they are going to check everything over and see what it is.

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I know how it feels. Have had neurological issues+++ on a deeper level while studying abroad for a year and it can be very very scary.

It is important to remember that reactions from gluten can come as late as a week or more after ingesting.

So it can be a bit hard to pin point what it was that made you sick.

 

Probably a good idea to stay away from everything that can be dangerous all together, and stick to what you know is safe for your body. Wether it be unprocessed food, whole foods, clean meats, fish etc.

Hope you find out whats causing it!

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Sorry you're going through this.  What is SIBO?

Small Intestine Bacteria Overgrowth, just learned about it in the past week reading trying to find something to make this stop, went from IBS to that, reading.  But doing what the dr. ordered for now.  Feeling better, he gave me meds to make symptoms less severe, and I went the lab this morning.  Results will be April 29th I think.

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C diff.  I take probiotics.  I do not know how this happened.  I have not had antibiotics in years until now, and I wash wash wash, I have 5 kids, I wash all food and hands. And no one else is sick, just me.  Yet, its in the lab results.  C difficile Toxins A+B Positve.

 

Taking Flagyl now.

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Now its florastor 2x and I have to have an Endoscopy, any advice anyone?  What do I ask about it?  He wants to see my Esophagus and Stomach, not sure what else he is looking at.  I am still bloating after meals and burping a lot.  No extra blood tests have been done or anything of that sort, just want to see inside of me and I am not a brave soldier.  Advice and tips welcome...comfort always welcome.

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I hope your tests go well.  Some of us have an immune reaction reaction to oats.  So you may have been having problems in your gut for a while now.  Hard to know about these things really.   Lots of times it is trial and error to learn how our bodies react.  Kind of the school of hard knocks education.

 

The gluteney cake may have been a trigger for a more active immune response.  Since the immune reaction is meant to protect us from nasty invaders it doesn't stop quickly.  I have had gut pain and other GI symptoms last up to a month and a half after a glutening.  It really does encourage you to be careful!  Or at least it did me.  :)

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Thanks both of you.  I have been feeling much better, still not balanced, I went the other direction now.  And still bloating and burping, but I am eating again, healthy foods only though.  I am being very careful.  I have never gone through an endoscopy before and do not know what to expect or ask or such as that.  Nervous. :unsure:

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Hi Surviormum, did you have your endoscopy? it's nothing to be scared of - didn't you have one when first DX?

 

A combination of viruses and glutening is always a possiblity and it may multiply esponentially the effects, I think. Give us news...

 

alessandra

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Rescheduled so my husband could be there, it will be next Tuesday.  No, I have not been through this before, only blood tests.  I am trying to brave up.  Cost and pain, not my favorite things.

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While it is costly....most endoscopies are painless. Ive had four and was very nervous for the first one. They will give you meds--- for me I get really sleepy and don't remember much of the procedure...make sure the hubs asks the doctor to explain what he saw ... often this conversation is more detailed than the procedural report and you will likely not be able to have an intelligent conversation right after the procedure. Plan t take it easy the day of the endo...but you should be fine later in the day.

Good luck to you :)

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Because of the complicated circumstances around my endoscopy I was put to sleep for it and so don't remember a thing other than waking up with a sore freakin throat. It was like steel wool in the Sahara  I can not recommend enough having a stock of Halls on hand for the evening. I'm not sure how common it is, but my sore throat took a bit to go away. Some cough drops or something would have been amazing to have. 

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Well, I had it twice, but I asked to be anesthetized because I really, really, really hate having things in my throat. However they will spray something in your throat to numb it. My own GP told me he had several while fully awake and he never asked to be asleep because he never felt he needed it. The tube is really small. How much you will feel depends on the ability of the doctor. But: bear in mind it is a ten minutes-procedure and it it not PAINFUL, although I guess it can be uncomfortable.

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Rescheduled so my husband could be there, it will be next Tuesday.  No, I have not been through this before, only blood tests.  I am trying to brave up.  Cost and pain, not my favorite things.

Don't worry about the endoscopy!  I've had two of them.  Although I am just like you and was freaking out prior to each of them (I don't like to be unconscious while people I don't know do things I don't understand to me!) there was no pain and discomfort aside from the IV needle stick.  They aren't kidding when they say it will be over before you know it.  It really is true.  You've got this- survivor mom!!  No worries!!!

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You got this...try to enjoy the nap ;)

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That was a good nap.  I think I will take another one.  Now I just need the results of the Biopsies.  Much easier than all of the C-Sections.  Thanks everyone.

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That was a good nap.  I think I will take another one.  Now I just need the results of the Biopsies.  Much easier than all of the C-Sections.  Thanks everyone.

 

Good to hear....let us know how it goes...oh I think we already told you --- but do request written or electronic copies of BOTH the Procedural Report & Pathology Reports!!!

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Procedural Report, no Biopsy report yet.

 

Grade 2 Esophagitis in the lower third of the esophagus and the gastroesophageal junction compatible with erosive esophagitis and reflux esophagitis

Erythema, Congestion, coffee ground heme and petechiae in the Stomach and fundus body compatible with  Gastritis

Erythema, congestion and atrophic appearance in the antrum and pre-pyloric region

Erythema in the distal bulb and proximal second part of the duodenum, compatible with mild duodenitis

Otherwise normal to the third part of the duodenum

Gastric PH 1 ( I do not understand that but do not understand any of this really so, there it is)

 

I have made several posts in the past 7 weeks, that is how long I have been sick.  I was glutened 8 weeks ago.  I have been very careful about what goes in my mouth since.  Is this new gluten or not healed yet from years of gluten?  Or something new altogether?  Waiting to hear from the doctor. 

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I remember it took about 5 weeks for the red dots to go away last fall.  I guess 8 weeks plus fits.  What will it be next time 6 months?  That was me just blowing steam.

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