Continuation

IrishHeart · June 15, 2012

On 6/15/2012 at 6:56 PM, bartfull said:

Irish, Bunnie, my heart goes out to you. My dad was my best friend too, and I know I've told you the hearbreaking story of my Celiac Mom. But as Dani said, they are all happy for us that we are feeling better. And they will be with us forever. (((((HUGS))))) to you both.

Thanks,Bartfull. Right back atcha!!

(hugs)

dani nero · June 15, 2012

I got my blood tests today, and sadly, I did understand correctly, and was right about the doc not checking for vit and mineral levels in my blood. She checked for diabetes, hormones and the IgG level only.

TSH was 4.something the first time and 5.1 the second time.

IgG was 7 .. or maybe it was <7.. the paper is in the car and I'm writing from memory.

No way to know know if I'm sluggish due to my thyroid being lazy, due to sleep apnea, or me lacking something. How long does it take for a celiac to start absorbing everything nutrients properly on their own? I actually am starting to feel a slight improvement in my health. It's small but it's there!

I did complain to the doc about fatigue and muscle pain while exercising and she told me that it sounds to her that I'm not very well trained, and that whenever I feel tired is just the time to push myself harder to overcome the fatigue and be in better condition. I did that, and I do feel a little more alert actually, but my muscles still have to ache when I do it.. even hurts to go up the stairs. It's the kindof scary sensation one would feel while they are stretching hard for the first time.. you know when you feel your muscles are burning, about to tear and you can't wait until you're done counting so the stretch is over lol! I'll just keep on pushing and hope I overcome it because I'm liking the extra alertness :-)

@IH: It broke my heart hearing about your dad's symptoms! God bless his soul.

@Bunnie: My mother is just so convinced she has it all figured out and that I need guidance.. I think.. she's still a loving mother and really does her best from her own point of view. As Squirmingitch stated she's my mom after all, which means I could not exchange her for any other no matter how magnificent they are (meaning your mom). Never send her overseas and always stay close to her :-)

I'm also sorry to hear about your dad, and god bless his soul too :-)

@cavernio: I actually didn't tell them that I diagnosed myself or that I learned most of what I know from this community. I told that that the doc couldn't officially diagnose me because I'm on the diet, but that SHE was the one who told me it might be celiac and how to do the diet properly. I tell them "the doctor said".

In any case, I do actually sleep terribly and wake up a million and one times almost every night. I read what you wrote about sleep apnea 2 times and still have to read it a few more times to be able to fully understand it as I'm feeling a little low on IQ currently ;-( but I did understand the conclusion and thank you for thinking it up. It will sadly take a while for me to know whether it's sleep, a deficiency or my thyroid for a while longer :-(

@NickMcKinnis: I don't mean to be mean towards your grandparents, but thinking you're sick because you don't believe in God is just a horrible thing to say to a person :-( Sorry that you had to hear that from them!

NickMcKinnis · June 16, 2012

On 6/15/2012 at 9:01 PM, dani nero said:
@NickMcKinnis: I don't mean to be mean towards your grandparents, but thinking you're sick because you don't believe in God is just a horrible thing to say to a person :-( Sorry that you had to hear that from them!

Not mean at all, technically it wasn't because I didn't believe but more so that I didn't believe in miraculous healing for myself. Thank you for your concern and I hope that you had a nice visit with your parents.

VydorScope · June 16, 2012

On 6/15/2012 at 9:01 PM, dani nero said:
I did complain to the doc about fatigue and muscle pain while exercising and she told me that it sounds to her that I'm not very well trained, and that whenever I feel tired is just the time to push myself harder to overcome the fatigue and be in better condition. I did that, and I do feel a little more alert actually, but my muscles still have to ache when I do it.. even hurts to go up the stairs. It's the kindof scary sensation one would feel while they are stretching hard for the first time.. you know when you feel your muscles are burning, about to tear and you can't wait until you're done counting so the stretch is over lol! I'll just keep on pushing and hope I overcome it because I'm liking the extra alertness :-)

Dani,

How long have you been exercising now, and how sedimentary were you before it? Your muscles SHOULD hurt some, and you SHOULD get tired if you are pushing yourself. Gosh, I remember when I turned my life around with exercise... a 15 FOOT jog would have me stopping to catch my breath, and to compare... in November I will be getting my black belt in American Freestyle Karate... BUT it took a decade to rebuild my muscles/etc.

In general, if you always stop the moment you feel a bit of fatigue, or ache, you will not get beyond that point. You do not want to over do it, but I agree with your doc, push through it. Set goals, take your time, and expect this to take a while.

IrishHeart · June 16, 2012

I have to chime in here. I "pushed through it" for the 3 years I was unDXed and it made my pain level worse. I developed neuropathy and parasthesia and did significant damage to my muscles, tendons, joints and ligaments. All because doctors, PTs and chiropractors alike chastised me for not doing more. I had major muscle mass loss and bone pain, but no one knew why.

If you are still recovering from malabsorption, your muscles and joints may not be able to do strenuous labor or exercise. In fact, it is contraindicated. My doc has told me to proceed cautiously.

Start slowly. Walk. Go aS far as you can the first time.

The next time, go a little further.

Build up to bike riding and weight training with 2 lb. weights and then, increase your reps.

I think we need to understand here that malabsorption creates major problems and do not let anyone tell "you you can do it, you're just out of shape". I heard that BS for 3 years and I suffered while trying to do what was recommended.

Give yourself a break,Dani. You're still healing.

A TSH of 4 is not critical, but some endos in the US think 3.5 is the upper range for "normal" limits. The range is .8 for hyperthryoid and 3.5 for hypothyroid

the scale looks like this:

hyperthyroid .8 -----------------3.5 hypothyroid

so, 4 is slightly elevated BUT the old range was up to 6.

Your doc may be watching you at this point to see if it comes back in range off gluten, thereby sparing you the need for meds?

Ask her.

VydorScope · June 16, 2012

On 6/16/2012 at 1:20 PM, IrishHeart said:

Start slowly. Walk. Go a far as you can the first time.

The next time, go a little further.

Build up to bike riding and weight training with 2 lb. weights and then, increase your reps.

Yes, this is exactly what I was getting at when I said do not push to hard. Thanks for further explaining that. You have to push a little to make any progress, but it should be slow and steady. Took me over a decade. Considering my iron count was ZERO (not joking) when I started, you can have an indication how far I had to go.

IrishHeart · June 16, 2012

I hear you. A soup can was heavy for me 2 years ago and walking the length of my driveway left me gasping for breath. The treadmill at the gym? well, I made the 2 miles, yes, but it took me 45 minutes and I was in pain the entire time, my legs, feet, back burning and numb and when I slipped and almost flew off it, hubs said it was time to stop. No more swimming, dancing, riding a bike.

This was before DX, so why this had happened to me was still perplexing.

My doc says to me "slow and steady wins the race". Like some us have a choice anyway?

I can walk my driveway now --several times a day---and it is a LONG driveway --and not be winded and I can lift 2 lbs. weights. 10 reps 2X a day. I drove the mower to cut the grass. I could not even shift in the car anymore.

But I also did all this with assistance from a MT/PT and it has taken me 18 months to get this far.

Not bad for someone who was headed for a "hoveround".

Dani is half my age and will rebound a lot faster, I think!!

dani nero · June 16, 2012

On 6/16/2012 at 12:05 PM, VydorScope said:
Dani,

How long have you been exercising now, and how sedimentary were you before it? Your muscles SHOULD hurt some, and you SHOULD get tired if you are pushing yourself. Gosh, I remember when I turned my life around with exercise... a 15 FOOT jog would have me stopping to catch my breath, and to compare... in November I will be getting my black belt in American Freestyle Karate... BUT it took a decade to rebuild my muscles/etc.

In general, if you always stop the moment you feel a bit of fatigue, or ache, you will not get beyond that point. You do not want to over do it, but I agree with your doc, push through it. Set goals, take your time, and expect this to take a while.

I've been cycling (not hard-core but like back and forth to the market which is around 40-50 minutes of hill-type road) for around two years I think. I didn't mean the type of fatigue one would feel while working out, that I can handle. What I don't like is the burning sensation. The fatigue I feel comes after the workout and the next couple of days (around a week or more) I would not be able to do it again and it would be a little harder to move.

The ache is like a stretching burning sensation as if I hadn't moved for ages. I am trying my best to push further than what I usually would now and these few days things have actually improved.. maybe my muscles are being fed well now ;-)

dani nero · June 16, 2012

On 6/16/2012 at 1:20 PM, IrishHeart said:
I have to chime in here. I "pushed through it" for the 3 years I was unDXed and it made my pain level worse. I developed neuropathy and parasthesia and did significant damage to my muscles, tendons, joints and ligaments. All because doctors, PTs and chiropractors alike chastised me for not doing more. I had major muscle mass loss and bone pain, but no one knew why.

If you are still recovering from malabsorption, your muscles and joints may not be able to do strenuous labor or exercise. In fact, it is contraindicated. My doc has told me to proceed cautiously.

Start slowly. Walk. Go aS far as you can the first time.
The next time, go a little further.
Build up to bike riding and weight training with 2 lb. weights and then, increase your reps.

I think we need to understand here that malabsorption creates major problems and do not let anyone tell "you you can do it, you're just out of shape". I heard that BS for 3 years and I suffered while trying to do what was recommended.

Give yourself a break,Dani. You're still healing.

A TSH of 4 is not critical, but some endos in the US think 3.5 is the upper range for "normal" limits. The range is .8 for hyperthryoid and 3.5 for hypothyroid

the scale looks like this:

hyperthyroid .8 -----------------3.5 hypothyroid

so, 4 is slightly elevated BUT the old range was up to 6.

Your doc may be watching you at this point to see if it comes back in range off gluten, thereby sparing you the need for meds?
Ask her.

The second TSH scan was 5 not 4.. but that's not too far off is it ;-)

Gosh that must have been tough for you, but you proved to be the toughest one in the end IH :-) Well done!

It seems that you've experienced the same type of aching burning sensation that I feel when I paddle.. Sometimes it just makes me want to screem out!

My muscles can handle walking ok, so does that mean I can continue cycling? How can I tell if I've reached my limit and when to push more? I'm really liking the stamina I've built and the past few days I found that I am not getting as fatigued as used to.

IrishHeart · June 16, 2012

On 6/16/2012 at 3:30 PM, dani nero said:
The second TSH scan was 5 not 4.. but that's not too far off is it ;-)

My muscles can handle walking ok, so does that mean I can continue cycling? How can I tell if I've reached my limit and when to push more? I'm really liking the stamina I've built and the past few days I found that I am not getting as fatigued as used to.

It can bounce around, depending on if you were fasting when the blood was drawn. Mine was 5.3, 4.3, etc. back then.

But now, it is always between 2.4 and 3.0 . If I have eaten, it is lower. If it is a fasting draw for my blood glucose, the TSH reading is lower. (I did not know that until my doc told me)

I think you may have answered your own question here, honey!

You are building muscle and stamina and so, you can "up" your activity now and when you exhaust your muscles, then you're there.

Then, slowly add more time.

Add slowly, but just keep going. The burning sensation gets less and less.

Make sure you are HYDRATING!!! Your muscles need it. Lots of water.

I am no expert; just sharing what I have learned the hard way.

dani nero · June 16, 2012

On 6/16/2012 at 3:43 PM, IrishHeart said:
It can bounce around, depending on if you were fasting when the blood was drawn. Mine was 5.3, 4.3, etc. back then.

But now, it is always between 2.4 and 3.0 . If I have eaten, it is lower. If it is a fasting draw for my blood glucose, the TSH reading is lower. (I did not know that until my doc told me)

I think you may have answered your own question here, honey!

You are building muscle and stamina and so, you can "up" your activity now and when you exhaust your muscles, then you're there.
Then, slowly add more time.

Add slowly, but just keep going. The burning sensation gets less and less.

Make sure you are HYDRATING!!! Your muscles need it. Lots of water.

I am no expert; just sharing what I have learned the hard way.

In my own experience the expert is the one who lived it and figured it out, not the one who read about it and spreads it around.

Thanks for this IH :-)

IrishHeart · June 16, 2012

On 6/16/2012 at 4:01 PM, dani nero said:

In my own experience the expert is the one who lived it and figured it out, not the one who read about it and spreads it around.

Thanks for this IH :-)

Dani, girl!!!

That may be the quote of the week!no, Month, no wait--year!

Well said!

You're going to be all right, hon.

You're on your way now.

VydorScope · June 16, 2012

On 6/16/2012 at 3:22 PM, dani nero said:

I've been cycling (not hard-core but like back and forth to the market which is around 40-50 minutes of hill-type road) for around two years I think. I didn't mean the type of fatigue one would feel while working out, that I can handle. What I don't like is the burning sensation. The fatigue I feel comes after the workout and the next couple of days (around a week or more) I would not be able to do it again and it would be a little harder to move.

The ache is like a stretching burning sensation as if I hadn't moved for ages. I am trying my best to push further than what I usually would now and these few days things have actually improved.. maybe my muscles are being fed well now ;-)

Yea you want to be eating a protein heavy stuff ahead of your work out and avoid simple carbs for a bit after it. Carbs are great when you need a quick energy hit, but the fail fast often leaving you more tired then before. You may want to stick to say 2-3 days a week until you get your energy levels are up. Personally I find the pain and the fatigue comes on stronger, the less I work out. I pretty much live in constant pain, with no known reason, so I have an idea of what you feel. I personally find pushing myself in the gym, dojo, and etc helps. Everyone's body is different so play around a bit. Also look at mixing up what you do. If you bike a lot, try swimming or running for a while.

Also, I would suggest avoiding caffeine for a while if you consume it. Caffeine is a fairly safe stimulant (which I am currently drinking LOL), but like simple carbs it can (and is more likely) cause fatigue. Caution, going cold turkey on caffeine could cause withdrawal symptoms, but they will pass in a week or two at most.

I am not a doc, just a fellow traveler on the road.... so all standard disclaimers apply.

IrishHeart · June 16, 2012

On 6/16/2012 at 7:14 PM, VydorScope said:

I pretty much live in constant pain, with no known reason, so I have an idea of what you feel.

I have to ask...have you gone off gluten yourself to see if it helps? I know your wee one is gluten-free, but maybe it would help you? I have met many people with so-called fibromyalgia who have NO pain off gluten. They say "thanks, it's a miracle!" Nope, it's just a reduction of inflammation, but you're welcome.

I went from a "just kill me now" level for 7 years to a bearable "I can deal" right now (and I can take NO medications, so this is not all that fun).

Just a thought. (and I am not a doctor either. )

but my doc told me I know more than most of his colleagues about celiac. I told him I know a whole bunch of people who know than most doctors--they are fellow celiacs on c.com.

VydorScope · June 16, 2012

On 6/16/2012 at 8:06 PM, IrishHeart said:

I have to ask...have you gone off gluten yourself to see if it helps? I know your wee one is gluten-free, but maybe it would help you? I have met many people with so-called fibromyalgia who have NO pain off gluten. They say "thanks, it's a miracle!" Nope, it's just a reduction of inflammation, but you're welcome.

I went from a "just kill me now" level for 7 years to a bearable "I can deal" right now (and I can take NO medications, so this is not all that fun).

Just a thought. (and I am not a doctor either. )

but my doc told me I know more than most of his colleagues about celiac. I told him I know a whole bunch of people who know than most doctors--they are fellow celiacs on c.com.

hehehe

Well, yes and no. I did go gluten-free more of "it is simpler to make whole family gluten-free then just the kid" the first time around, and we will be doing that again this round once we finish eating up the gluten. I have had all the Celiac (blood and scope) tests, and failed them all. I really should have study more I guess?

If its gluten... I will know soon enough, but have no reason to suspect it at this time.

And we should so get one of those mail in doctorate degrees that are all over the internet so we can call ourselves doctors! LOL