Sleeping my life away!

[Keight]

Ok, I am being slightly melodramatic, but my weekends and public holidays are largely spent lying down and watching Youtube docos. I am a little concerned my energy isn't picking up enough to 'start having a life' again. 

 

Work exhausts me, and I have cut the gym to whenever I feel the energy is enough to go. But beyond that, I simply cannot summons up the energy to do anything else. 

 

Is this going to abate? 

[Wheatwacked]

I sure hope so.

[Ennis-TX]

I still need to take Liquid B-vitamins & vitamin D in the morning to operate fully, and a bit of ketone powder (Ketones really only help on a ketogenic diet) I pace and do elliptical to get my heart rate up first thing in the morning, then exercise, sometimes taking a preworkout to get me going. Followed by a protein shake with healthy fats before fixing breakfast.

Honestly I am a zombie if I skip the vitamins and ketones, the workout works to jump start my day, but on rough days I need a preworkout or caffeine.

[cyclinglady]

You were just diagnosed four months ago, correct?  It takes most adults a year or longer to heal per Dr. Murray at Mayo: 

What were the results of your iron, blood glucose tests that were taken at the beginning of December?  What did your doctor say?  After three months post diagnosis,  has your doctor rerun a celiac panel?  Are your antibodies going down?  

 

 

 

[NNowak]

As cyclinglady said, it can take well over a year to recover. Nutritional deficiencies can impede healing, zapping your energy. Let yourself rest, attempt low impact daily exercise to get the blood pumping, and make sure your diet is healthy and balanced. Your doctor should be aware of your concerns as not everything is due to Celiac. 
 

Hope you feel better. 

[Keight]

3 hours ago, Ennis_TX said:

I still need to take Liquid B-vitamins & vitamin D in the morning to operate fully, and a bit of ketone powder (Ketones really only help on a ketogenic diet) I pace and do elliptical to get my heart rate up first thing in the morning, then exercise, sometimes taking a preworkout to get me going. Followed by a protein shake with healthy fats before fixing breakfast.

Honestly I am a zombie if I skip the vitamins and ketones, the workout works to jump start my day, but on rough days I need a preworkout or caffeine.

Thanks Ennis. I cannot tolerate caffeine at all any more. ? I am usually a chilli fiend too, but now feel ill if I have a little. Any, and all, stimulants have been told to hit the road by my body. My intestines run this show now! 

I am on a cocktail of vits and minerals, which I take on breakfast. I feel better working out early too, but it interferes with my energy for work; I am a truck mechanic, so need to be on my game for that. 

[Keight]

3 hours ago, cyclinglady said:

You were just diagnosed four months ago, correct?  It takes most adults a year or longer to heal per Dr. Murray at Mayo: 

What were the results of your iron, blood glucose tests that were taken at the beginning of December?  What did your doctor say?  After three months post diagnosis,  has your doctor rerun a celiac panel?  Are your antibodies going down?  

 

 

 

Hmm, thanks Cycling_lady. An interesting watch, though the first 5 min had me facepalming myself. 

Given it was the xmas period and I had no time to get to pathology to give blood in a fasting state, I have not done that yet. My dr is very loathe to do antibody panels for a long while yet. 

I was glutoned the Mon night before Xmas. A really rotten 5 days afterwards, I tell you! The point is, I learned a lot from that episode. I understand the full force of my diagnosis AND how freaking lucky I am to have access to healthful gluten-free foods. It also thumped it into my brain that this is no simple disease. It has life long, serious ramifications, and had I not got my diagnosis, only who knows what my life might be like 5 years from now. 

I'll get the blood work done ASAP and take it from there. I just need to learn to enjoy a more indoor, sedate lifestyle for now. 

It does sting a bit that all I enjoyed about life is no longer there. No more coffee, no more heavy gym sessions, no more lightening quick brain activity, no desire to go on long hikes and bike rides. Travel is going to be more burdensome and the energy to prepare for it seems momentous. 

I can take the food restriction in my stead, and I have zero issue with no eating conventional food, but the mental adjustment to the other lifestyle ramifications is my undoing. 

[Ennis-TX]

Took me over a year to start weights and stationery bIke like I used to, and I eased into it. Coffee...try it again in 3-6 months, start decaf and brew weak.

The social and traveling aspect is essentially bring your own goods all the time and learn to host.

On the bright side your not dealing with constant D and more allergies. Give it time.

 

[NNowak]

On the contrary, once you’ve healed a bit more you will have more energy than you know what to do with. I was diagnosed 24 years ago and started distance running when I recovered enough. I’m far healthier than I was before. 

[cyclinglady]

Ah....the fatigue may very well be due to gluten exposures like the one you had right before Christmas even though your GI issues may have resolved within days.   Each exposure can set you back.  If frequent, it can prevent healing.  For me, a gluten exposure can last for weeks or months and trigger flare ups from my other autoimmune disorders.  

If you want to get up off the couch and move, avoid gluten at all costs.  

 

[squirmingitch]

6 hours ago, Keight said:

 

It does sting a bit that all I enjoyed about life is no longer there. No more coffee, no more heavy gym sessions, no more lightening quick brain activity, no desire to go on long hikes and bike rides. Travel is going to be more burdensome and the energy to prepare for it seems momentous. 

 

You know what you just did there? You had a little pity party. OK, they're allowed. I think all of us have had at least 1 & many of us had several. 

You're in the early stages of learning all the ropes yet. You made a mistake before Christmas. Those cost but you'll never forget the lesson either. It gets better! I promise!!!!! We have a saying...... We didn't get sick overnight and we won't heal overnight. I remember when I felt like I didn't have the energy to crawl and I couldn't remember the names of simple, everyday things like fork & plate & shirt. 

Hang in there! You have to walk before you can run. 

[Keight]

3 hours ago, cyclinglady said:

Ah....the fatigue may very well be due to gluten exposures like the one you had right before Christmas even though your GI issues may have resolved within days.   Each exposure can set you back.  If frequent, it can prevent healing.  For me, a gluten exposure can last for weeks or months and trigger flare ups from my other autoimmune disorders.  

If you want to get up off the couch and move, avoid gluten at all costs.  

 

It has been my only gluten experience since I went gluten-free. Ironically, I had spoken to the waitress, who had arranged a clean chicken breast to be cooked separately for my salad. I FORGOT TO ASK ABOUT THE DRESSING! 

But yes, I shall heed all advice above, quit the pity party and carry on. Thank you all for being here to hold our hands. 

[knitty kitty]

23 hours ago, Keight said:

Ok, I am being slightly melodramatic, but my weekends and public holidays are largely spent lying down and watching Youtube docos. I am a little concerned my energy isn't picking up enough to 'start having a life' again. 

 

Work exhausts me, and I have cut the gym to whenever I feel the energy is enough to go. But beyond that, I simply cannot summons up the energy to do anything else. 

 

Is this going to abate? 

Have you been checked for vitamin deficiencies?  You might not be absorbing enough thiamine from your diet.  Thiamine is necessary to provide energy to our cells to make muscles work.  Without enough thiamine, we feel run down. Other vitamins New Celiacs may be low in are Vitamin B12, and Vitamin D.

https://lpi.oregonstate.edu/mic/vitamins/thiamin#deficiency

Hope this helps!

 

[Keight]

43 minutes ago, knitty kitty said:

Have you been checked for vitamin deficiencies?  You might not be absorbing enough thiamine from your diet.  Thiamine is necessary to provide energy to our cells to make muscles work.  Without enough thiamine, we feel run down. Other vitamins New Celiacs may be low in are Vitamin B12, and Vitamin D.

https://lpi.oregonstate.edu/mic/vitamins/thiamin#deficiency

Hope this helps!

 

Thanks knitty kitty. I know I am iron, calcium, vit D and Vit B12 deficient. My dr isn't too keen to look further into my deficiencies, so how can I get my other statuses checked?

[cyclinglady]

This is the place to have a pity party!  ?

I am sorry that you had a gluten exposure.  The first year after a celiac disease diagnosis is tough.  What other illness requires the patient to treat themselves?  

I am concerned that you are low in minerals and vitamins.  Supplementation might be necessary.  If you were low in iron, were you anemic as well (low hemoglobin)?  That also can contribute to fatigue.  I was so anemic that I could not catch my breath.  I had to take constant breaks while doing even simple chores around the house.  

I hope you recover fast.  Maybe consider finding a GP who is more supportive.  

[knitty kitty]

2 hours ago, Keight said:

Thanks knitty kitty. I know I am iron, calcium, vit D and Vit B12 deficient. My dr isn't too keen to look further into my deficiencies, so how can I get my other statuses checked?

Those vitamins and minerals you are low in are the easiest ones to test for.  Testing for other vitamins is a bit trickier because they are mostly inside cells.  Doctors can test for byproducts of vitamin usage, but this can be expensive.  

Check with your doctor about supplementing thiamine.  Doctors can give thiamine intravenously, or you may prefer over the counter tablets.  Thiamine, like the other B vitamins, are water soluble, so excess is excreted in the urine.  Here's some more information.... 

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

https://www.ncbi.nlm.nih.gov/books/NBK482360/

The RDA is 1.1 mg for me, but I take 2.0 mg.  I take Now brand which is gluten free, and available on Amazon.com.  I started at a lower dose (.5 mg) and slowly added more.  I experienced some buzzing or tingling when I first started taking it.  It was like my body was being re-energized.  It's made an enormous difference in my life.  Oh, consider taking magnesium, too, because thiamine needs magnesium to function properly.  Actually, all the essential B vitamins need each other to work properly, so a B complex along with the thiamine might be a good idea... again, check with your doctor.  

Not medical advice.  I'm not a doctor.  I have experienced thiamine deficiency.

Best wishes!

 

 

[Keight]

1 hour ago, knitty kitty said:

Those vitamins and minerals you are low in are the easiest ones to test for.  Testing for other vitamins is a bit trickier because they are mostly inside cells.  Doctors can test for byproducts of vitamin usage, but this can be expensive.  

Check with your doctor about supplementing thiamine.  Doctors can give thiamine intravenously, or you may prefer over the counter tablets.  Thiamine, like the other B vitamins, are water soluble, so excess is excreted in the urine.  Here's some more information.... 

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

https://www.ncbi.nlm.nih.gov/books/NBK482360/

The RDA is 1.1 mg for me, but I take 2.0 mg.  I take Now brand which is gluten free, and available on Amazon.com.  I started at a lower dose (.5 mg) and slowly added more.  I experienced some buzzing or tingling when I first started taking it.  It was like my body was being re-energized.  It's made an enormous difference in my life.  Oh, consider taking magnesium, too, because thiamine needs magnesium to function properly.  Actually, all the essential B vitamins need each other to work properly, so a B complex along with the thiamine might be a good idea... again, check with your doctor.  

Not medical advice.  I'm not a doctor.  I have experienced thiamine deficiency.

Best wishes!

 

 

Awesome! Thanks knitty kitty. I tried magnesium and found I was a bit queasy after it. I will, however, give the B1 a try. I have done a bit of reading up on it. Pretty keen to see if it helps. 

[GFinDC]

Hi Keight,

Some other things to try are boron and lemon juice.  Boron helps bones absorb calcium.  Lemon juice with meals helps our GI tract absorb iron.  I suggest taking a 1000 IU vitamin D pill daily (Naturemade brand is good) for vitamin D deficiency.  Your body will build vitamin D faster using a smaller dose daily than it will taking a larger does once weekly.

You shouldn't take calcium or dairy at the same time as you take in iron.  Calcium inhibits iron absorption.  So a cheeseburger is not a great idea for building iron.  But you can take calcium several hours prior or after a meal with meat or liver.  Cow liver has high levels of iron, chicken liver is even higher in iron.

Bone broth is good stuff to try.  The minerals from the bones are easier to absorb as they are in a natural, organic friendly form.

Restaurants can be a tricky thing.  Sometimes they have a gluten-free or allergy menu you can ask for.  But for the first 6 months of the gluten-free diet I suggest avoiding restaurants completely.  There is too much chance of mistakes in them.

It is good to stick with a whole foods diet of food that you cook yourself at home for a while.  That way you know what is in the food you are eating.  If you go to a restaurant ask if you can bring your own food and just order a drink.  Some places will allow that.  Oranges, nuts, boiled eggs and such are easy to carry around. 

[squirmingitch]

It's okay, we ARE here to hold your hand for any future pity parties. Oh & just so you know.....it's quite possible, sooner or later, you will have a teary melt down in the middle of the grocery store. Who of us hasn't? I did twice. Surprised the heck out of myself! 

We're also here to cheer the victories! And make no mistake, there WILL BE victories! 

[Keight]

Lol. Glad to hear there will be positives too! 

It feels absolutely crappy to be lying around when my boys could be living life with me. And it feels horrid to be needing time off work to sleep. 

I'm seeing my dr this afternoon, I've done my blood tests and I'll plug on with life. 

[Keight]

Ok, saw my GP. She seems to think there is something else going on. If my blood tests come back normal for iron and fasting blood glucose, she'll refer me on to a gastroentereologist. I think it is a little beyond her expertise. At least she is honest.

I have started taking B complex. A tiny bit more energy yesterday. 

I suspect that glutening Monday week ago knocked me about. I had been feeling better overall, but my energy for daily living had not bounced back. 

Ugh. I am just too mentally bankrupt to consider anything more for now. A psych visit might be the best thing for me right now.