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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Do You Measure Progress?
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16 posts in this topic

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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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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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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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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"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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"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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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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Or have run out of gas :D

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

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

<<<<snort>>>>>

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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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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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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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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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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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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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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.

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