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Losing Hope...


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#46 GFinDC

 
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Posted 27 July 2012 - 04:31 PM

Hi Kswan,

You asked if you would feel better in 3 weeks gluten-free. The answer is probably, but not 100% better. Healing takes time, and when you start gluten-free you may develop SIBO, (small intestine bacterial overgrowth) symptoms. The problem is your guts are a symbiosis of bacteria and your own body. The bacteria help digest food and other good things for you. But there are nasty strains too and any of them can get kind of out of control at times. Gluten-free is a major diet change for many people and that can cause the bacteria strains to get out of wonk. It can help to stop dairy for a while and also limit sugar and starchy carbs. When you aren't digesting well the bacteria have a field day and make lots of gas. This is what happens with lactose intolerance also. Rather long way of saying that yes, the healing process is not a straight line to 100%, it is often somewhat up and down or back and forth. Another issue is that often people here report becoming more sensitive to gluten after being off it a little while. It seems like symptoms are more pronounced and sometimes the reactions are worse.

The usual time recommended for eating gluten before the biopsy is 3 months, not 3 weeks. But some people find they can't do 3 months because of the symptoms. Personally, I didn't do it as I had to work and that was not going be possible if I was eating gluten. And I had been off gluten 4 months or so before getting an appointment for testing. So it was really a useless thing to do testing at that point. So I flunked the blood antibody tests but I passed the symptoms test. My body hates gluten and it leaves no doubt about it.

Here is some info on various topics. The meal idea threads are just to let you know that life goes on after celiac and gluten-free and there is actually plenty of food to eat. You may end up cooking more food than before but it is not the end of the world.

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

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#47 IrishHeart

 
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Posted 27 July 2012 - 04:31 PM

kswan, Irish Heart can certainly get overly passionate at times, as you can see. :o

Read from those who have posted and make the best choice for you. I wish you success. :)



If by calling me "overly passionate", you mean wanting to help a woman who is in the exact same boat as I was for many years--and wanting to help her stop struggling and get the right help from a doctor ?...well, then, then yes, that's what I am.

I offered my thoughts, IMHO and based on the "medical criteria" most celiac centers offer.

Just trying to help.
  • 4

"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


#48 Jestgar

 
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Posted 27 July 2012 - 04:33 PM

Personally, I would take the advice of ...

Please keep in mind that no one on this forum has medical or nutritional training (that I know of) except as it pertains to their own situation. People are offering their opinions based on their own histories. What any individual says may, or may not, pertain to you.

I realize this is difficult, but this is your own personal journey, following someone else's journey is unlikely to be the most beneficial avenue. Weigh what people are saying, research what seems most relevant to you, and make your own decisions.
  • 1
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#49 Jestgar

 
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Posted 27 July 2012 - 04:35 PM

If by calling me "overly passionate", you mean wanting to help a woman who is in the exact same boat as I was for many years--and wanting to help her stop struggling and get the right help from a doctor ?...well, then, then yes, that's what I am.

This is her boat. Telling her what to do has the potential to cause as much harm as good.
  • 0
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#50 IrishHeart

 
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Posted 27 July 2012 - 04:39 PM

This is her boat. Telling her what to do has the potential to cause as much harm as good.



But, I did not tell her what to do, Jess.

I offered her my thoughts----as did everyone else--none of which are harmful.
  • 3

"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


#51 Jestgar

 
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Posted 27 July 2012 - 04:42 PM

I am thinking I should have an endoscopy too since I've learned that that is the only true way to be diagnosed with Celiac (is this true?).

To try to respond to your original question, the answer is "it depends". Are you looking for an MD's diagnosis?, if yes, then, based on comments from forum members, some will diagnose on bloodwork alone, some will not diagnose without an endoscopy, with biopsies, and a few have diagnosed on dietary response.

If you are more looking for the 'second opinion' diagnosis (second to your own, since it can be easy to doubt ourselves), you might consider a naturopath (find a good one) or some other holistic medical practitioner (good one).
  • 3
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#52 GFreeMO

 
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Posted 27 July 2012 - 04:45 PM

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.
The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.
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#53 Jestgar

 
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Posted 27 July 2012 - 04:57 PM

I think you are wise to have both procedures done --if it will make you feel better to have a sense of what "may be going on down there".


The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.

Yes to both of these. So many people have posted that their best experiences come when they take charge of their own health care. Decide what you want, and I'm pretty sure most of the people here will cheerlead you all the way through. :)
  • 3
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#54 justlisa

 
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Posted 28 July 2012 - 11:51 AM

You know what? People like Irish are the reason I keep coming back here..

I've read through this thread 3 times thinking I'd missed something. Good grief...every bit of advice/opinion she gave was done well...

I have to say this... I'm a grown woman and it's getting old the "walking on eggshells" that has to take place in here. And, you're probably not going to like this either but... I think some of the moderators are just a little too quick to chastise in here. I've yet to see anything that "crazy" and I've seen so many "interventions"... I can only speak for myself, but I'd prefer to come in here knowing I'm going to be treated like a rational adult. It really can be very insulting... I guess we will see if I'm allowed back?
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#55 justlisa

 
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Posted 28 July 2012 - 11:57 AM

Also...

Thanks for the compliment, Squirming, but I'm just learning, too...but I do try to share what I'm learning... :)

And, I'm learning a lot from folks here...
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#56 Gemini

 
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Posted 28 July 2012 - 12:53 PM

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.
The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.



Well said, GFreeMO! People do get passionate about Celiac when they nearly die from it. I know that road well.
It's time people realize they do not have to live and die by what a doctor says. If you wait around for a diagnosis to come, you may end up so sick, recovery won't happen. There are huge limitations with the medical community when it comes to chronic disease and much of what they do is money driven these days. There is no money in Celiac disease, people. You recover on your own, through dietary changes and it takes a long time.
No pills, no surgery, no treatments. Just food and they don't have control over the food. Start to trust your own instincts on this and you'll get better. Listen to Irish......she's a smart lady!
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#57 Gemini

 
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Posted 28 July 2012 - 12:56 PM

You know what? People like Irish are the reason I keep coming back here..

I've read through this thread 3 times thinking I'd missed something. Good grief...every bit of advice/opinion she gave was done well...

I have to say this... I'm a grown woman and it's getting old the "walking on eggshells" that has to take place in here. And, you're probably not going to like this either but... I think some of the moderators are just a little too quick to chastise in here. I've yet to see anything that "crazy" and I've seen so many "interventions"... I can only speak for myself, but I'd prefer to come in here knowing I'm going to be treated like a rational adult. It really can be very insulting... I guess we will see if I'm allowed back?



You are very observant for someone who hasn't been here long..... ;)
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#58 justlisa

 
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Posted 28 July 2012 - 01:07 PM

Well said, GFreeMO! People do get passionate about Celiac when they nearly die from it. I know that road well.
It's time people realize they do not have to live and die by what a doctor says. If you wait around for a diagnosis to come, you may end up so sick, recovery won't happen. There are huge limitations with the medical community when it comes to chronic disease and much of what they do is money driven these days. There is no money in Celiac disease, people. You recover on your own, through dietary changes and it takes a long time.
No pills, no surgery, no treatments. Just food and they don't have control over the food. Start to trust your own instincts on this and you'll get better. Listen to Irish......she's a smart lady!


Agreed! Probably right up at the top of the list of reasons "why" celiac/NCGI is the red-headed step child of the medical community...no money...
  • 2

#59 GFinDC

 
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Posted 28 July 2012 - 02:53 PM

Hi Kswan,

Ignoring all the drama, I do want to get back to your issues for a bit. The biopsy always has a possibility of a false negative, just like it has the possibility of a false positive. So regardless of the biopsy results, it is a good idea to try going gluten-free for 3 months or so and see if there are any improvements.

You could write a food and symptom log each day starting a week ahead of going gluten-free. Note what you eat, how you feel, how much sleep you get anything that may help you identify a change. You could track your blood pressure and your blood sugar too. Doing that first thing in the morning before eating would be good. Body temperature would be interesting to note also. I can't tell you what the changes might be, but maybe your doc could read the log and interpret. It sounds like your current doctor is not real open to diagnosing you with celiac. But maybe the new one will be more informed.

For me I had changes after going gluten-free like:

Allergy symptoms reduced greatly
Teeth and gums improved greatly.
Sinuses cleared up.
Digestion improved greatly. I could keep food down.
Feet and ankles didn't swell up as much as before, but didn't completely stop. I later found out about several food intolerances that improved that through elimination diets.
Sleep improved although it has been on and off progress.
Mind became clearer.
Memory improved.
Vision improved.
Joints didn't hurt as much, especially after starting thyroid supplements and removing nightshades.
Didn't spend all night in pain, could actually sleep.
Stopped fainting for no particular reason,
Had more energy.
stopped having a tic above my eye.
Stopped having repetitive thought loops.
Complexion improved so that I didn't look like a pale zombie.
Calmed down and wasn't angry at the drop of a hat anymore.
Circulation to my feet and legs improved recently due to stopping all grapes and alcohol.
Typing didn't improve but that is because of nerve damage in my arm and not celiac.

Anyway, I am probably forgetting some things that changed, but you get the idea.

Now other people might have symptoms like rash, or thinning hair, or a whole host of other things. So my list is just to give you one example, the symptoms each person gets can vary widely. None of us can tell you what symptoms you will see improvement in first, but it is good to note anything that seems to improve. My gut pain did not go away at first, it reduced greatly but there was still some for almost a year later. But digestion did improve.

Lots of us have to self-diagnose because the tests are not perfect, or the doctors don't do them right, or they don't do them at all, or we might have NCGI which there are no tests for now. And some of us are just silly and fail tests a lot. :) Really, some people are IgA deficient and they never "pass" those antibody tests. Others just don't seem to pass any celiac blood tests but still have severe symptoms. Then there are the tricky ones (silent celiac) who don't have any symptoms and yet their doctor somehow stumbles on their celiac disease.

So, don't totally trust your doctor is the message, you need to learn about this stuff yourself. You made a great start coming here to do that, as this is the best resource for celiac and gluten free on the web. Even if we get a little drama going sometimes. :)
  • 6
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#60 love2travel

 
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    Čeznem da se u Hrvatskoj!

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Posted 28 July 2012 - 06:16 PM

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.

Amen, Sister! What she says comes from her soul with the best of intentions, offering hope from one who has been there.

And to kswan - there is always, always hope. Do not allow yourself to ever think otherwise! :) Tomorrow is a new day.
  • 2
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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