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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.

Help Needed Please Re: Glutening
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GFreeMO    113

If you go to bed feeling fine after dinner and wake up fine and eat breakfast and then a few hours later blow up like a huge balloon and look 7 mo. pg with pain and trapped gas etc. is it safe to assume that what you had for breakfast is the culprit or should I look to what I had for dinner?

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kareng    1,992

For me...it would likely be something I ate for breakfast. For some, it takes longer. What did you eat for breakfast? Its possible its not gluten but a food you ate, too. Lactose intolerance does that, too.

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IrishHeart    1,633

I used to react quickly (I called myself a fast-responder") , now I am on "tape delay" :rolleyes:

so, figuring out where/when for me is like driving in Boston traffic.

In other words--nearly impossible.

I know sometimes I get gut swelling/histamine responses from OTHER foods like sausages, salami, tomato

or too much cheese.

Could be you're still healing and something is just not agreeing with you?.

or you have a temporary dairy intolerance?

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I would try to record what I ate for both. I would decide what could be suspicious and what I feel totally safe with. Sometimes you can find it in the ingredients, or can compare it to other times. Sometimes you never figure it out. I try to decide on the most questionable item and when I eat it again (If I do) beware. Sometimes I discover the ingredient does not cause it after-all, and sometimes I catch the culprit.

I hope you will find it. (Did I just see it in another post? ) I hope you will feel better soon.

Diana

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GFreeMO    113

Thanks girls!

Heck I don't know what got me but something did big time as I just had to crawl up the stairs b/c of weakness when just the other day I was out hiking and feeling good.

I have a migraine, joint pain, mucus discharge, gas....you know the drill.

-Mo

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IrishHeart    1,633

Mo,

I understand your frustration. I really do. I have to squash frustration all the time. :rolleyes:

I can't tell you how many times at the beginning of this healing thing when I thought I was home free and "cruising along" and bam!.....nope.

I had a lot of good days/bad days up -and- down stuff for many months, then it all calmed down.

(the GI stuff anyway). The other symptoms I have take longer to resolve.

Keep a notebook and see if you can tell what's bugging your system. (truth be told, I kept one and still could never figure it out).

I thought I had issues with everything from sals to fructose to amines. The thing is, with a ravaged gut, we can have issues with ANYTHING.

I actually do have a problem with high histamine foods and to resolve that, I take them out for a month and the problem resolves.

Various enzymes that help digest and break down foods in the gut are depleted because of celiac. When the villi regrow and the inflammation dies down, you should be able to eat most foods without problems. (Notice I said "should" because some celiacs have other food intolerances or allergies develop to foods like dairy and soy. Notice I said some. :D)

My GI doc did extensive testing to make sure I did not have other GI tract issues or inflammatory bowel diseases or infections.

We tested for pathogens (I had no measureable good gut bacteria, so I supplement heavily with probiotics)

We test frequently for any other AI diseases (I did have a hypothyroid, then a hyperthyroid problem, blood glucose issues and elevated liver enzymes, 3 types of anemia (iron, B-12 and Folate), and my Vit D was tanked. I have osteoarthritis, hair loss, blah blah blah

But those complications are pretty much resolved (except for the OA, of course--that's for life, I'm afraid) and some lingering nerve pain and bone pain.(which may or may not resolve--no doc can tell me for sure) For intense muscle weakness and wasting --I have worked with a physical therapist 2X a week for the last 2 years). This is an ongoing healing process for me.

I also had food allergy testing done as well. Nothing showed there, yet I cannot eat soy (which is fine, because I do not care for it) or too much dairy.(which is not fine because I love ice cream and cheese) :D.

So, one day I asked my GI doc point blank,"so, what the hell is going on-if it's none of those things? What's wrong with me? Why aren't I like other celacs who are all better in 6 months or a year"? and he said

"Nothing is going on. You're healing. Every year is a healing year."

I did not really like that answer, as I would have preferred,"It's THIS______ and here is how we fix it !! Take this _______"

That did not happen. :( No magic pills.

So, we all push on. Sometimes, the day goes on without a hitch and sometimes, I have wicked muscle/joint/bone burning pain.

It does not mean I have been glutened.

It just means I am not "there yet". But I'll get there and so will you.

That's my perspective anyway, FWIW

Hang in there, hon.

.

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Adalaide    361
It does not mean I have been glutened. It just means I am not "there yet". But I'll get there and so will you. That's my perspective anyway, FWIW Hang in there, hon. .

Some days, all you can do is feel like the 5 year old in the back seat asking "are we there yet?!?!?!"

The answer is always no, but as long as the car keeps moving at least you know you're getting closer.

And some days you whine and cry because being stuck in the back seat, along for the ride and nothing you can do to get there faster sucks.

We're all here, because we aren't there. But at least we're all sharing the back seat together. Now would you please stop touching my side. MOOOOOOOOOOOM!!!!!!! :P

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GottaSki    459

Some days, all you can do is feel like the 5 year old in the back seat asking "are we there yet?!?!?!"

The answer is always no, but as long as the car keeps moving at least you know you're getting closer.

And some days you whine and cry because being stuck in the back seat, along for the ride and nothing you can do to get there faster sucks.

We're all here, because we aren't there. But at least we're all sharing the back seat together. Now would you please stop touching my side. MOOOOOOOOOOOM!!!!!!! :P

Exactly!

Time - never thought it would take so much time to heal - luckily most folks heal more quickly than I.

Hope you are feeling better - drink lots of water and do keep a log - sometimes you will find a pattern - sometimes you'll find hidden gluten and other times it is just a one off.

Hang in there - it does get better :)

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GFreeMO    113

Thank you all so much for the help. Your kind words mean so much to me. Sometimes I read on here that people feel great in like 2 weeks and I am struggling so I get frustrated. It hard for me as I am sure it is for all of you to think back to when you didn't have this. I would be out jogging or hiking or shopping all day etc. Some days all I have in me is to take a shower and sit and sew or read. It makes me sad to think of life like this now. It could be sooooooooo much worse though so I am thankful for that. I am thankful for people like all of you that help me get through the day.

So thanks! - MO

Irish, I have elevated liver enzymes too and I am going to get rechecked for those in a few weeks at the gastro. Do you have any idea why we get this?

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GottaSki    459

I too had elevated liver enzymes at diagnosis - they improved at each draw after removing gluten - 3mo, 6mo and at a year mine were perfect and have stayed there for nearly three years.

Celiac is taxing on many systems - the digestive organs all have to work much harder. Elevated liver enzmes is quite common for us.

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IrishHeart    1,633

Ski pretty much answered your question for me (she knew I was off getting my neck and back adjusted at the chiropractor......and thank YOU very much, celiac <_< )

:D ah, it's a blast, isn't it? and I was always the one in the middle of the back seat, since I was the baby of the family, swooning with car sickness and balancing my feet on the "hump" that used to be in floor of the back seats of most cars. (yeah, that's right---I'm old)

Mo, sweetie

elevated liver enzymes are really nothing to concern yourself with as this is often an inflammatory response in many autoimmune diseases.

In most cases, they are only mildly and temporarily elevated and are not a sign of a chronic, serious liver problem.

They'll come back down in time.

Inflammation does a bunch of weird things to our organs, blood, muscles and bones.

But, as we heal, and the inflammatory process subsides, many issues resolve.

Hang tough.

Addy! roll the window down, please. I need some air!!!!!!!!

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Adalaide    361

Oh yeah, your body will do all sorts of idiotic things that will make you :blink: or :huh: but most of the time I find it isn't particularly alarming.

Our car had a hump in the middle too. I had the sense to only have one sibling though. :P Oh, and to be the oldest.

I would put the window down but your leg was touching my leg. Besides, I don't like the way the wind blows my hair in my face. I could just blow on you, then you'll have air.

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GFreeMO    113

Well, my doctors nurse (not gastro) freaked the hell out over the liver enzymes so it scared me. This is the same dr. that gave me the ibs diagnosis and sent me out the door with antidepressants despite the fact that I have raging DH, migraines, joint and muscle pain, night sweats and low grade fevers while eating gluten.

Thanks for the advice I am seeing that the elevated enzymes is common among us.

Oh and I have terrible bladder issues from celiac and that same dr. said "well your urine showed no infection so you are fine"

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GottaSki    459

I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree.

since all the tests they chose to run were normal it must have all been in my head --- right? :(

wrong --- it was all in my gut -- at least we know better now :)

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IrishHeart    1,633

I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree.

since all the tests they chose to run were normal it must have all been in my head --- right? :(

wrong --- it was all in my gut -- at least we know better now :)

......nodding my head in total agreement.....

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Adalaide    361
...depends....whatdja have for lunch??

spam :ph34r: look... some days are just those kinds of days.

I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree. since all the tests they chose to run were normal it must have all been in my head --- right? :( wrong --- it was all in my gut -- at least we know better now :)

Isn't that the best? Being referred to a shrink was one of my favorite highlights. <_< It is so reassuring know to know we aren't crazy. Well, not that kind of crazy. :D

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GottaSki    459

Isn't that the best? Being referred to a shrink was one of my favorite highlights. <_< It is so reassuring know to know we aren't crazy. Well, not that kind of crazy. :D

Got that right! We are crazy fun - not crazy - I refused antidepressants the first 10 or so times they were offered - finally gave in when my youngest was 3 - took them for a few weeks and was so angry I almost hit one of my kids - I have never ever wanted to strike a child - went off them cold turkey against doctors orders. Brain had zappy electrical feelings for about a month but soon I was back to my "normal" self - too many AI symptoms to count, but stayed away from docs for about 4 years except for annual paps.

For anyone reading along - if docs tell you it's all in your head or maybe you are hormonal, stressed, overworked and it does not ring true to you - run away. My sister has battled major depressive order her entire life - she has ALWAYS known she was depressed. Meds are a life saver when they are needed - but they are not needed for celiac disease.

Ok hopping off soapbox ;)

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Adalaide    361

I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.

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notkuroda    4

I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.

the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:

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cavernio    9

the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:

Try telling that to someone who's been bummed most of their life and who doesn't want to try and fix 'who they are' because 'there's nothing wrong with them'. That's my sister and my dad.

Unfortunately for me I didn't have any idea what celiac disease was or that I could have it until got abdominal issues that only occured after I tried going on birth control pills.

Right now my main concern is my neuropathy because I need my hands and feet to do pretty much anything, but a close second is my mental state...little motivation, almost always tired I just want to sit down and not have to do anything, have a hard time keeping a constant focus (I space out all the time during conversations, miss things in movies and shows, going on 2 years of not working) even though I can read/communicate on my own time alright, mood swings, (I thought they'd gone away, ya right). The fact that my bowels are a little loose and I have too many stinky farts is the least of my concerns.

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GFreeMO    113

Do any of you get flu type symptoms when going through a glutening? Not the sore throat stuff but a low grade fever and terrbile muscle pain, weakness and just feel like when after you have had the flu?

I am totally wiped out.

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kareng    1,992

Maybe you have a light case of the flu? Several versions are going around.

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GFreeMO    113

I don't think so...I get this way when the DH gets going. I also have a zillion bleeding sores on my lips. Maybe it's a DH thing.

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IrishHeart    1,633

I feel pretty lousy if I get hit, Mo. If your DH is blossoming, maybe you did get CCed.

Drink water, rest up and it will pass soon. Sorry, hon.((hug))

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