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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

What To Do When Glutened?
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Hi there, 

 

My wife was recently diagnosed with Celaic and we are a newly gluten free household. We've done well so far, but there's a learning curve about what to do when out and about, and all the crooks and crannies that gluten can be hiding. 

 

I'm wondering what to do when she starts to have a reaction from something or other. 

 

Her primary symptoms are:

  • Migraines & headaches
  • Weariness / exhaustion
  • Brain Fog
  • Bloating & gas
  • General digestive distress
  • Neck / back pain

I want to have a roadmap of things to do when this happens to reduce the duration of her reaction and feel less helpless. 

 

Are there things that make you feel better when you (or someone you love) has been glutened? If you suspect or find out after the fact that there was gluten in something you ate, do you have tricks or tips to dealing with it?

 

Thanks!  

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This little guide has helped me: http://www.livestrong.com/article/177800-the-best-foods-for-a-celiac-flare

The brain fog hits me first so I walk around dazed and confused for a while before realizing what happened.

I stick with soft foods like steamed fish and if I eat veggies, I over cook them.

Salt baths relax me if I'm up for it

Drink lots of water

Most of all, rest and patience (that last one has been a doozy for me to learn - that IS a trick!)

Another member here was told not eat in restaurants the first year & after I stopped trying to eat out, I was saved a lot of frustration.

It helps me to come here.

Good on you for being supportive!

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Rest, drink lots of water and be patient!

Read the newbie section as it contains valuable tips. I agree -- no eating out until she feels better and you get this all down.

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Ditto.  Rest, water, and patience.  And eat mild, easily digested food in small portions.  Even if she doesn't get gastrointestinal systems, it is very much like recovering from a flu bug. 

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I've been reading a lot here and in books and other places.

 

When I become sick and feel like I've had a gluten exposure, I do a few things.

I increase my water intake.  Try to flush my system.

I've been drinking Aloe Vera every day, 2 ounces of it.  When I feel glutened, I add 2 extra ounces every day.
This is what I've been drinking:  http://images.iherb.com/l/GAV-10064-1.jpg

I go to a very strict and limited diet with things I know don't bother me.
Those things, for me, include rice crackers, cottage cheese, some jello, salmon salad made with olive oil mayonnaise.
I do this for 2-3 days.
I sleep as much as I can. 
I try and figure out what caused it, and work on not repeating the exposure.




 

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I'm sure it's horrible for your insides, especially in a weakened state, but a cup of coffee can work miracles for me.

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I usually take Alka-seltzer for the gut problems, which lessens the brain fog.  If I'm also experiencing aches or pains I'll use Alka-seltzer with Aspirin, but generally I use pain med free versions so it's really just aiming to settle my stomach.  I'll eat Rice Porridge which is just broth and rice that cooks until it's almost soggy, usually plain the first day and slowly adding things like veggies, meat, and cheese as I get hungrier/ regain my appetite.

 

My dad uses Tums and is usually right as rain within 24 hours.  We both agree on the restorative powers of ginger ale.

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I'm a newbie here, just reading through threads.  I have to commend you for posting and supporting your spouse! You rock! Not everyone is understanding and a lot of people like to poke fun at celiacs/gluten sensitives.  It's very nice that you are trying to learn what to do to help her.

 

First, my best friend becomes a 2 liter of ginger ale.  I specifically must have a 2 liter because during the time I am glutened, I cannot be counted upon to pour anything properly or see straight - but I can find that giant green bottle! I also drink ginger tea on day 2+ after being glutened, but day 1 it's only ginger ale.  I am usually dying of thirst from the V&D.  I think it's important to find the drink that works best for her to prevent dehydration (water and tea won't stay down for me - but certainly "better" options).  

 

Being glutened IS and truly feels like being poisoned, so don't be surprised if she is really upset, distraught, or withdraws.  I don't have true emotional reactions to the gluten but I feel moderately confused for the first 12-18h (brain fog REALLY setting in) and during/after this I gradually withdraw/doze and eventually sleep.  

 

My worst symptom is the fever/chills that follow the V&D.   I mention this because at this point I desperately need HELP.  I cannot function on my own - one time I "got stuck" in the bathtub and had to call my husband home to help me out.   I know it is not a "remedy", but having a supportive spouse is very, very important...not just emotionally but sometimes the effects of gluten are so bad I really need assistance from another person in doing basic things.  For the record I am 33y female, with one child 9y, physically fit - the "me" when I am glutened is so not me!!!  You sound like a loving, supportive spouse, and this is the BEST thing you have to offer when the G-monster hits.  

 

Like others have mentioned, I also return to "safe" foods first after being glutened.  I think these foods are different for everyone, but the most basic foods she eats regularly without any kind of seasoning.  For me it is bananas, melons, yogurt, brown rice...I have trouble with soups and hot foods at this stage. Toward the end of day 2 is the first time I can keep food down and I stick with these foods until I get REALLY hungry, which I usually do around 80-96h (3.5-4d) after being glutened...this is the sign I have turned the corner.  At this point I usually want and am willing to cook a decent meal.  After this meal I tend to feel like I am on Cloud 9 - an odd sense of euphoria that I can only attribute to my body thanking me for good food.  The meal is still usually mild - typically chicken or baked potatoes, a roasted veggie.  So get her basic foods to help her bridge back into eating again.  

 

I also take the supplement Spirulina - it is an algae that contains all the essential amino acids.  It also helps clear the digestive system of nasty stuff! I take it every day, not just when I am glutened.  But I DO take it when glutened, if I forget my other supplements - OK - but I keep with the Spirulina for the nutrients and cleansing help.  Anecdotally, I think it helps with bloating.  It's available pretty much anywhere supplements are sold, but with any supplement, research before buying - tons have gluten in the capsule :( 

 

Ok sorry for the book report! I tend to ramble! Just take away to "treat her like a pregnant woman, anything she wants or will take, make it so."   

 

A few random tips I can't omit..

- When I have a headache coming on (anytime), I eat yogurt.  It seems to work.

- I have taken Benadryl shortly after being glutened...it helped me sleep and avoid the some of the headache/fever/chills phase.

- Supplements can be your friend.  I don't advocate taking tons of supplements, but I take some basics to support the healing process.  

- Heat for the neck/back pain...hot baths, epsom salts...hot as she can tolerate and stay in for at least 45 mins...old tradition for detoxing and very relaxing. You can offer heating pads, or a heated neck wrap, even a hot towel (soaked in super hot water, this also works for leg cramps).

- Avoid grains (all grains) if bloating is bothersome. 

 

Hope some of this helps! Love the forum here!

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As some have said before, getting plenty of fluids is your wife's best bet. I try drinking at least 2 liters of water every day, but when I'm feeling particularly ill from gluten, I try to set a goal of 8 oz per waking hour (I don't vomit from getting glutened, so I don't have to worry about it coming back up) to try to keep hydrated from my incessant runs (TMI :rolleyes: ).  When I get sick of water, I'll switch to peppermint herbal tea.  Herbal teas are caffeine free, so I will count a couple of those as water intake.  I would also assume that it helps flush out your system, therefore getting the gluten out faster.

 

Also, I'm not sure if it's the detoxing that helps, or if it just helps me relax, but I run a very warm bath with epsom salts and baking soda (I don't measure, just dump in a pretty decent amount of each).  It seems to help...if nothing else, I fall asleep pretty soon after.

 

And last, but most certainly NOT least, try to get a lot of rest.  My last glutening graciously happened the day before I had a 3 day weekend, so I had plenty of time to rest (which was actually Thursday...still trying to recover, but not feeling 100%).  I've been known to sleep 12+ hours after being glutened.  I chalk it up to my body having to physically repair itself from the villi being destroyed.  I actually don't think I could be that far off!!

 

Love her, support her, and hopefully she appreciates your help!!! It seems to be anymore that a good support system is few and far between.  It's really sad, and I'm sure she appreciates all your effort to learn.  I know I do, for her!!! :)

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I am fascinated by the comments!  I have new to the Gluten Sensitivity.  I didn't realize I was trying to help myself even before I knew I had a sensitivity.  I would drink mint or peppermint tea, and lots of water.  It is so eyeopening to know why the symptoms appeared in the first place.  I am really glad I found this forum.

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Every time I get glutened I google the heck out of the internet, trying to figure out how and why does this toxic process work and is there some kind of herb or anything that will help.

 

So, this last time I got glutened, I stumbled on something that was actually helpful.

 

Pelargonium sidoides, also known as umckaloabo. A herbal remedy you can buy for cough and cold. This herb blocks the production of interleukin 15 which is associated with celiac disease. Here is the article I read that led me on this path of discovery. (sorry I know I sound very dramatic. I'm just so dang psyched!)  

 

http://www.celiac.com/articles/22480/1/Blocking-Interleukin-15-May-Treat-Celiac-Disease-Symptoms/Page1.html

 

Okay, so I spent all day Friday running around town trying to find the stuff, because I was desperate. I cannot handle the symptoms of a glutening... the nausea, bloating, and pure anger at the world. I found Umcka by Nature's way. I took some. Nothing much happened at first, but by the next morning, I felt normal. The week after getting glutened, I always bloat up like I'm 5 months pregnant for a solid 6.5 days. Right now it's Tuesday and usually by this point I would be feeling the pits, hating my stomach, sleeping badly, desperately waiting for a week to be up so that I could get back to normal. But, I am normal. My stomach feels fab. I'm giddy with the potentiality of this herb. Could I maybe eat at a restaurant now and then without all the usual anxiety? That would be a freakin miracle.

 

I can't find anybody else on the internet talking about taking this stuff for a celiac flare. I took the recommended dose on the package, fyi.

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Every time I get glutened I google the heck out of the internet, trying to figure out how and why does this toxic process work and is there some kind of herb or anything that will help.

 

So, this last time I got glutened, I stumbled on something that was actually helpful.

 

Pelargonium sidoides, also known as umckaloabo. A herbal remedy you can buy for cough and cold. This herb blocks the production of interleukin 15 which is associated with celiac disease. Here is the article I read that led me on this path of discovery. (sorry I know I sound very dramatic. I'm just so dang psyched!)  

 

http://www.celiac.com/articles/22480/1/Blocking-Interleukin-15-May-Treat-Celiac-Disease-Symptoms/Page1.html

 

Okay, so I spent all day Friday running around town trying to find the stuff, because I was desperate. I cannot handle the symptoms of a glutening... the nausea, bloating, and pure anger at the world. I found Umcka by Nature's way. I took some. Nothing much happened at first, but by the next morning, I felt normal. The week after getting glutened, I always bloat up like I'm 5 months pregnant for a solid 6.5 days. Right now it's Tuesday and usually by this point I would be feeling the pits, hating my stomach, sleeping badly, desperately waiting for a week to be up so that I could get back to normal. But, I am normal. My stomach feels fab. I'm giddy with the potentiality of this herb. Could I maybe eat at a restaurant now and then without all the usual anxiety? That would be a freakin miracle.

 

I can't find anybody else on the internet talking about taking this stuff for a celiac flare. I took the recommended dose on the package, fyi.

 

Is this what you are talking about http://www.naturesway.com/Search.aspx?sv=umcka  Which one did you use? If this really works, I'm in! I am so miserable when I get glutened! 

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Sorry I took a while to respond to your question Brandiwine. Yes that is the product I tried initially.

 

Just a little update on pelargonium sidoides: I was away on vacation for the past week, at one of those all inclusive resorts in the Caribbean. I was fairly terrified to eat the food at the buffet but I did, with a lot of caution. I also took 6 capsules a day (which might have been overkill) of this product: California Xtracts, Elderberry +, 90 Veggie Caps, which I found on iherb.com. This contains pelargonium sidoides, as well as some other stuff. Anyway, I had very very very minimal glutening symptoms while on vacation. I didn't look pregnant lying there in the sun in my swimming suit, and I did not feel at all gross. It was fairly miraculous. 

 

I wish somebody would research the use of pelargonium sidoides (aka umckaloabo) for help with the symptoms of gluten exposure for those with Celiac disease. But I suppose since it is non-patentable, there's no money in it for the big pharmaceutical companies.

 

Dosage within the recommended limits appears fairly safe from what I have read. http://examine.com/supplements/Pelargonium+sidoides/

 

In my opinion, it's worth a try for anybody with celiac disease who suffers a lot from accidental glutenings.

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