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Help Needed Please Re: Glutening


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#1 GFreeMO

 
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Posted 10 January 2013 - 11:33 AM

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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#2 kareng

 
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Posted 10 January 2013 - 11:41 AM

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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#3 IrishHeart

 
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Posted 10 January 2013 - 12:23 PM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 1desperateladysaved

 
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Posted 10 January 2013 - 12:35 PM

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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#5 GFreeMO

 
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Posted 10 January 2013 - 01:36 PM

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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#6 IrishHeart

 
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Posted 11 January 2013 - 05:21 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 Adalaide

 
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Posted 11 January 2013 - 07:14 AM

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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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#8 GottaSki

 
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Posted 11 January 2013 - 09:09 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 GFreeMO

 
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Posted 11 January 2013 - 09:35 AM

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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#10 GottaSki

 
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Posted 11 January 2013 - 10:21 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 IrishHeart

 
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Posted 11 January 2013 - 12:21 PM

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!!!!!!!!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 Adalaide

 
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    It needs to be about 20% cooler.

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Posted 11 January 2013 - 01:14 PM

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.
  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#13 IrishHeart

 
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Posted 11 January 2013 - 01:29 PM

. I could just blow on you, then you'll have air.


...depends....whatdja have for lunch??
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#14 GFreeMO

 
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Posted 11 January 2013 - 01:51 PM

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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#15 GottaSki

 
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Posted 11 January 2013 - 02:15 PM

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 :)
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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