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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need Help Recovering From Full On Glutening
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18 posts in this topic

It's now day 8 and I still have really bad morning D and dehydration from a severe glutening on holiday.  Something i thought was maize turned out to be bulgar wheat so I ate half a cupful of it.  Desperately trying to calm my stomach down I've tried Aloe Vera (inner leaf), probiotics (non dairy), chicken and rice and L-glutamine together with rehydration sachets.  Looked like I was getting better yesterday but this morning it is back to dehydration again.

 

How many days can I expect this to go on at this level, with low grade nausea and feeling frankly rough?  Is there anything else I could be taking to relax/heal my gut?

 

The irony was that I was beginning to wonder if I really was celiac (as I never seem to get cc'd) and I didn't have the biopsy.  This episode, with high fever 48 hours after ingestion, body aches, insane hunger the day after ingestion, constant D and ataxia, dizziness, depression etc has left me with zero doubt.

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When I feel dehydrated a can of coconut water seems to quench my thirst better than water.  I like Amy and Brian's, or Blue Monkey, or Cocos-pure for a few brand names.  These contain nothing but coconut water which is like a natural sports drink.  I believe that is why it hydrates so well.  .  If you expect it to taste like water, you may be pleasantly surprised.  If you want it to taste like soda, well, it won't.

 

Eight days is a long time.  Hope you are well soon.

 

D

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Thanks so much D, however I react to coconut oil and am worried that the coconut milk will be more of the same.  Any thoughts on that?  I am craving fruit juices so will try some fruit compote and cinnamon later.

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Thanks so much D, however I react to coconut oil and am worried that the coconut milk will be more of the same.  Any thoughts on that?  I am craving fruit juices so will try some fruit compote and cinnamon later.

Can you have Gatorade? I know it's gluten free - but I don't know if you can handle everything else that's in it, but that is the ONLY thing that works for me. The blue one - I think it's called blue freeze works the best - even dr's recommend that one - I don't know why!

I hope you're finally on the mend!

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Do you ever do ginger tea sweetened with honey. Both have healing properties. Just don't drink too much of it because it has some negative effects (acidifies the body) if you drink too much. I'd stop at two cups at the most.

You could also try rice and/or bananas. Both are supposed to slow down digestion though they are easily digested.

And thank you for writing this. I've been having similar thoughts about doubting what my reaction may or may not be because I have been so good at staying gluten-free since I've started, only minor cross contaminations so far. You remind me not to become complacent.

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Thanks all so much for the suggestions and support.  I can say that things are starting to calm down now.  I think the dairy free probiotics really helped a lot.  I never take a lot of anything as I find this is what can sometimes tip me over the edge.  One probiotic a day together with Aloe Vera and usual supplements has made all the difference.  So good to know that this is lesson to us all!

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Uggghh, three weeks on and I'm still suffering.  I'm on a seriously plain diet and no wine and the itching is just insane.  It's like my stomach takes in the food, plays with it for a few hours then lets it race through undigested to my large intestine, where it just poisons me further.  I can't get up in the mornings I'm so tired from all of this.  I tried L-glutamine and that seems to work a little but i keep forgetting to take it.  Does anyone know what dose is good for inflammation in the gut?

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Three weeks -- that's brutal!! I feel for you. I hope things turn around for you soon. I drink a lot of homemade chicken stock when I'm hit, but I'm not sure about the l-glutamine dose....

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i'm so sorry, caroline :(  mine lasts for 2 weeks (and i couldn't believe it either, but that's how long it lasts...)  i guess everyone is different.  however, when i hit day 15, the fog lifts and it's OVER.  

 

people wonder why i''m super careful especially with cc - and i tell them:  if i get gluten, i can kiss 2 weeks of my life goodbye.  they really don't believe me, i'm pretty sure.  <nah, you should see their faces - they *don't* believe it.  i don't care if they think i'm a drama queen or a hypochondriac or anal.  too bad.

 

lots of hot showers make me feel like i'm de-toxing, whether it actually works or not i have no idea.  it does make me feel better.  and squeaky clean...  everybody else has given good suggestions, especially drinking lots of water/staying hydrated.  i sure hope you feel better soon.  

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Thanks guys.  I had an acupuncture session yesterday and she has managed to flush some of the stuff out of my system.  Things seem a bit calmer today though I am still dehydrated... She said my spleen and stomach (or digestive co-ordination in chinese medicine) were deficient.  She's worked on those.  Here's a link to the topic you might find interesting.  Thanks so much for your support. http://www.chinesemedicineliving.com/blog/medicine/organs/the-spleen/

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Are you eating anything solid yet?  What are you typically eating during the day?

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Yes, I'm eating solids - mostly chicken, or steak, lightly cooked veggies and some potato chips (gluten free).  That's about it.  Banana's and fruit are out because of the damp issue from the spleen/stomach.

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do you go to an acupuncturist on a regular basis?  i am curious about the lip color thing - are your lips pale now?  are you going back for another session?  how often do people go -  one session per week?   is it $$ pricey or does your insurance cover it?

 

gosh i ask alot of questions lolz - glad you are feeling a little better :)

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My lip colour is ok, though my tongue has been very pale for a while.  I see the acupuncturist about every three to four weeks.  I feel it really gives me much needed support through the healing and through all the crisis - emotional or physical.  Depending on your physical/emotional state it can be once every two weeks, or more or less - acupuncturists if you find a good one are not keen on over treating.  You might find that you feel better or worse after a treatment and that will level out over the week or two afterwards.  Sometimes I can get an immediate healing reaction (very quick tummy, tiredness etc) but a lot of the time I feel much much better and brighter and taller!

 

The cost in the UK is £35 per session - some might offer discounts for a block booking.  We don't have insurance for this here under the NHS so I pay out of my own pocket.  She says that I am considerably better than I was a year ago - I think it's largely because I'm not undoing her good work by eating things I'm intolerant to - i.e. chocolate, coconut, gluten, egg, soya, milk, fish, prawns... the list goes on!!  She uses pulse reading on me for dubious foods and it works very well.  She picks up on things that professional testing hasn't.  She got everything on the list except for fish and soya.

 

Try it and see how you go!

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The heavy symptoms last a couple of weeks for me, then my body goes through a sort of 'detox' phase with symptoms that aren't as crazy as the first couple of weeks. In total a glutening can affect me for upwards of 5 weeks - its just unbelievable, people can't believe it!

 

Hot baths and I agree, showers too, really help. Baths more so for me because you can relax and switch off, maybe listen to music which helps my brain to slow down a little and stop thinking about gluten and this terrible disease that consumes our lives and thoughts.

 

Reading a good book helps too. Again, its a relaxing pass-time and whilst you're reading you're not thinking about gluten and the symptoms you have at the moment (plus you can take it with you to the W/C!). I find that settling the mind is just as important as settling the body as you know thru accupuncture.

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Totally agree with you Chris, and it is such a relief to know that it isn't only me who seems to have endless symptoms.  I, for sure, am going to be totally careful about how and what I eat from now on.  I can't afford to have such a load of time taken from me!

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i actually always wanted to try acupuncture  -- i'm going to look around for one and see what their expense is.  i live in the sticks, though.  i can't even find a decent chiropractor :(  i had one that i liked but the office he worked out of turned into a "pain center" <narcotic dispensing organization) and he quit.  i think he was so disgusted he actually retired.  

 

the good news is:  since i've been feeling better on gluten-free diet, many of my aches that he treated for have since disappeared  :)

 

yeah, once i realize i've been glutened, i find a project that will keep me still (one time i sewed robes for the church kids' presentation, once i sorted through a giant box of papers, etc) then at least i feel like i've accomplished something even if it's verrrrrryyyyyyyy slooooowwwwwllllyyyyyyyy.   <_<  stoopit. gluten.

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Well, the acupuncture looks like it has done the job.  My stomach is far better co-ordinated and the D is near enough gone.  Moods are still a little erratic but brain fog has completely gone and I have had a big shop in London show interest in my handmade soap - so there's a result!  Does anyone find they have relationship problems when they get glutened.  I've been a big snipey and ratbaggy with my boyfriend, who is now completely emotionally withdrawn - and not here!

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