Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

How Do You Measure Progress?


1desperateladysaved

Recommended Posts

1desperateladysaved Proficient

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!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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. :)

Link to comment
Share on other sites
1desperateladysaved Proficient

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.

Link to comment
Share on other sites
IrishHeart Veteran

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.

Link to comment
Share on other sites
1desperateladysaved Proficient

"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

Link to comment
Share on other sites
kareng Grand Master

"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

Link to comment
Share on other sites
mushroom Proficient

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

Or have run out of gas :D

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

Link to comment
Share on other sites
mushroom Proficient

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

<<<<snort>>>>>

Link to comment
Share on other sites
kareng Grand Master

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:

Link to comment
Share on other sites
IrishHeart Veteran

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.

Link to comment
Share on other sites
1desperateladysaved Proficient

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.

Link to comment
Share on other sites
kittty Contributor

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.

Link to comment
Share on other sites
GFinDC Veteran

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...

Link to comment
Share on other sites
1desperateladysaved Proficient

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

Link to comment
Share on other sites
1desperateladysaved Proficient

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.

****

With the tape measure I am trying to see if there is an unusual variance in my tummy. There definatly is. One time way back I ate pizza and swelled 9 inches over night. And no I don't usual measure every night.

Now, my clothes feel baggier -when I can feel them. Usually, I don't feel them, because I an numb. Besides these pants have been baggy for a couple of years! They stay up, though. When they get caught on the spare tires, they stay up way too well. The capris I bought last spring were hopelessly too tight at the beginning. They are always under my dress, so nobody cares if they are too tight. They are no longer too tight, so there you go! But it might be just a fluke. Maybe they grew, or maybe tomorrow they wll be way too tight. I have seen that before.

I always do like to analyze the process, so please bear with me and don't worry I will be neurotic. Yes, I stick out like a fish out of water, but they can be really determined. Picture a salmon going up a mountain stream. I've been fighting this a long, long time. The home stream I am going to may be just ahead.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,162
    • Most Online (within 30 mins)
      7,748

    Lenabeana
    Newest Member
    Lenabeana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...