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How Do You Measure Progress?


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15 replies to this topic

#1 1desperateladysaved

 
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Posted 05 October 2012 - 06:29 PM

I am having trouble measuring change as my body recovers. I tried measuring my belly around the belly button. However, it never seemed to change at the belly button, but all around it. I couldn't figure a way to measure in a consistent place but the belly button.

Pain: I have been numb, so that is one reason I didn't get diagnosed, I guess. I bloated, I could see it sometimes, or did I, but it was not painful. It wasn't painful even when my breath was short.

Fogginess and Fatigue: These are rather hard to measure too. They also can differ from other causes.

Weight: It is staying stable. I guess I am not over weight, but my abdomen is still big. I perceive my body seems very skinny, but in the abdomen.

I think my highs are being higher; I also think my lows are getting lower, or atleast more distinct. One can't hardly miss it when they have diarreah. I also thing my tummy is debloating some, but I can't be objective like I would like to be.

I neglected to mention that when I was measuring aroung my belly button. I saw my tummy enlarge above and belove the belly button, but the belly button measurement was fairly constant. By that I mean that it only varied by 3 inches!
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#2 mushroom

 
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Posted 05 October 2012 - 08:01 PM

I have often :rolleyes: said on here that cutting out the gluten is not like turning of the faucet or the light switch, because even when the gluten is turned off you still have all that damage that has to heal, and it does require patience. No one can say how long it will take for you, in particular to heal, or give you signposts of measurements of your progress. This is something that you have to work out for yourself. We do try to help, but there are limits to our guidance. We all have different symptoms and rates of healing, and sometimes it seems like we even go backwards for a while :blink:

But in the end, if gluten is your problem and you stick with the program, there is a 98% chance you will get better, maybe not all the way better, but better than where you are now. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 1desperateladysaved

 
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Posted 06 October 2012 - 03:42 AM

I have often :rolleyes: said on here that cutting out the gluten is not like turning of the faucet or the light switch, because even when the gluten is turned off you still have all that damage that has to heal, and it does require patience. No one can say how long it will take for you, in particular to heal, or give you signposts of measurements of your progress. This is something that you have to work out for yourself. We do try to help, but there are limits to our guidance. We all have different symptoms and rates of healing, and sometimes it seems like we even go backwards for a while :blink:

But in the end, if gluten is your problem and you stick with the program, there is a 98% chance you will get better, maybe not all the way better, but better than where you are now. :)


Yeah, it is good to know there will be imrovement. It would be nice to have something objective though. Maybe if I heard what someone else keeps track of I might find something.
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#4 IrishHeart

 
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Posted 06 October 2012 - 06:54 AM

I think it is best for you not to worry so much about the tape measure, hon. You are looking for a total immediate transformation and it's just not going to happen that way.

Changes, progress, healing (whatever word works for you) is
slow
steady
often up and down
and sometimes discouraging,

because it is NOT immediate.

I always hesitate to say this on here because some may interpret it as discouraging, but I see it as being realistic.

It takes a long time to see the cumulative changes post-diagnosis. I did see some very positive changes by 8 months, more at 12, but I did not see real substantial LASTING progress until I hit 15 months. That is when I started to absorb nutrients again and gained some weight (in fact, a little too much weight :lol: ) and a LOT more energy.

I am almost 2 years post-Dx and I STILL have symptoms unresolved that involve muscle recovery, joint pain and other food intolerances.

But I just wait.
I do not get worried about it because I see the OVERALL progress I have made and believe me, I am not at all the sick, debilitated, dying "old" woman I was 2 years ago. I am aging backwards. :D ......Just like Benjamin Buttons!

Try to be patient. It will come.

If it helps, make a chart of ALL your symptoms for yourself, stick it on the fridge and check them off one by one as they resolve.
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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


#5 1desperateladysaved

 
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Posted 06 October 2012 - 02:01 PM

"If it helps, make a chart of ALL your symptoms for yourself, stick it on the fridge and check them off one by one as they resolve." Irish Heart

This is the sort of thing I wanted.

That is a plan. I am not really a figure minded person though it may have come off like that. But I am afraid to get 2 years down the road and still not be able to objectively see progress. I have already progressed even before I went gluten free. I want to know if progress is being made with some sense of objectivity. I never knew I was such a scientist.

Diana
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#6 kareng

 
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Posted 06 October 2012 - 02:21 PM

"If it helps, make a chart of ALL your symptoms for yourself, stick it on the fridge and check them off one by one as they resolve." Irish Heart

This is the sort of thing I wanted.

That is a plan. I am not really a figure minded person though it may have come off like that. But I am afraid to get 2 years down the road and still not be able to objectively see progress. I have already progressed even before I went gluten free. I want to know if progress is being made with some sense of objectivity. I never knew I was such a scientist.

Diana


When you are 2 years down the road and you can't see progress, you are on the wrong road or driving the wrong car! :D
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#7 mushroom

 
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Posted 06 October 2012 - 03:23 PM

When you are 2 years down the road and you can't see progress, you are on the wrong road or driving the wrong car! :D

Or have run out of gas :D
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 kareng

 
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Posted 06 October 2012 - 03:25 PM

Or have run out of gas :D



Actually.....that would be a real good measure of success! :D
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#9 mushroom

 
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Posted 06 October 2012 - 03:34 PM

Actually.....that would be a real good measure of success! :D


<<<<snort>>>>>
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#10 kareng

 
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Posted 06 October 2012 - 04:48 PM

D - the point is, if you are on the right track, you'll notice.

OK...The second point is I like to find the funny (at least what I think is funny) and laugh. :lol:
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#11 IrishHeart

 
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Posted 06 October 2012 - 05:03 PM

But I am afraid to get 2 years down the road and still not be able to objectively see progress. I have already progressed even before I went gluten free. I want to know if progress is being made with some sense of objectivity. I never knew I was such a scientist.

Diana



Diana,

I'm sorry, but your statements are not really making sense. You said: "I have already progressed even before I went gluten free"

and

"I want to know if progress is being made".

This makes no sense. Sorry.

Please hear me out and let me try this:

My husband is a scientist.

He says: To chart progress, you need a baseline. Then, you measure it from there.

So, how bad were you before you went gluten-free?

and......How are you now?

That's your progress!!! You cannot measure Progress by looking at what has NOT happened yet. You look at how far you have come!


Nothing in this world is guaranteed, honey.

This is the reality of celiac disease: it is treatable by a STRICT gluten free diet. Just do the best you can and let yourself heal. How can you start out on a healing path thinking "I will fail"?? or "what if I am not better?"

You come on here day after day after day and you are looking for a magic bullet and an instantaneous healing.

It just does not happen that way, sweetie.

I told you the truth. It took me almost 2 years to get here and I look back and say "Thank heavens!!! I am alive and happy and getting healthier as time goes by".

In my opinion, and I say this with all due respect and compassion.....you need to relax and adjust your thinking about how this works .....or you will simply drive yourself mad.
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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


#12 1desperateladysaved

 
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Posted 07 October 2012 - 02:33 PM

When you are 2 years down the road and you can't see progress, you are on the wrong road or driving the wrong car! :D


Yeah, for sure. So I wanna make sure now that I am on the right road and in the right car. Well, I fairly reasonably sure of that.
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#13 kittty

 
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Posted 08 October 2012 - 06:44 AM

Put the tape measure away. It will drive you neurotic! I used to be the same way with the scales when trying to lose weight. If you're going to measure, don't do it more often than once per month. Our bodies are never stable, and checking from one day to the next is not a good way to measure change.

Do your clothes feel looser around the middle? That's the best way to gauge if your mid-section is less bloated.
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#14 GFinDC

 
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Posted 08 October 2012 - 09:03 AM

Hi Diana,

I've read that some people get follow up endoscopies done at 6 months or once a year. I never had an endoscopy so I am not going to push that myself, but some people do it. Another thing you could do is follow up blood antibody testing at periodic intervals. A general physical might be worthwhile too, if you can get the results from the doctor. Doing your own testing is not impossible. You can take your blood pressure, glucose (sugar) testing, heart rate, weight etc at intervals too. Just do it the same way every time. So say you test blood sugar before eating the first time in the morning, and 1 hours later and 2 hours later. Or pulse and blood pressure before exercising and after exercising

Not sure about the car tho, they do have those built-in diagnostics these days...
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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

#15 1desperateladysaved

 
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Posted 09 October 2012 - 03:58 PM

Diana,

I'm sorry, but your statements are not really making sense. You said: "I have already progressed even before I went gluten free"

and

"I want to know if progress is being made".

This makes no sense. Sorry.

Please hear me out and let me try this:

My husband is a scientist.

He says: To chart progress, you need a baseline. Then, you measure it from there.

So, how bad were you before you went gluten-free?

and......How are you now?

That's your progress!!! You cannot measure Progress by looking at what has NOT happened yet. You look at how far you have come!


Nothing in this world is guaranteed, honey.

This is the reality of celiac disease: it is treatable by a STRICT gluten free diet. Just do the best you can and let yourself heal. How can you start out on a healing path thinking "I will fail"?? or "what if I am not better?"

You come on here day after day after day and you are looking for a magic bullet and an instantaneous healing.

It just does not happen that way, sweetie.

I told you the truth. It took me almost 2 years to get here and I look back and say "Thank heavens!!! I am alive and happy and getting healthier as time goes by".

In my opinion, and I say this with all due respect and compassion.....you need to relax and adjust your thinking about how this works .....or you will simply drive yourself mad.


Five years back I was dying. My blood pressure was dangerously high, my fatigue felt like 100 lbs extra weight to carry. I had 30 lbs of water on my bod. The supplements I took immensly helped the symptoms, but now I am getting to the root of the problem I know I am on the right track. I don't feel exasperated. I do expect to get better sooner than many because of my supplement program. Yet, I have had celiac symptoms for 30 years. I am not all strung out about this, but excited for progress. I also have responsibitlities that I would like to do better at. I must be a mother, wife, housekeeper, taxi driver....and I must battle the Celiac Giant.

Ha Ha ho ho, I think I am running out of gas, but I can't see the gage!

Diana
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