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HumanDecency

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HumanDecency Contributor
HumanDecency
Posted

Just curious: Is it normal to wake up feeling pretty good and then just deteriorate throughout the day? I'm trying to pin down if this is a normal progression of the illness, a symptom with my acid reflux or if I am glutening myself somehow. I do not believe it is the latter as I am pretty strict on cross contamination and the like.

 

Although I may have an issue with nuts. I'm going to cut nuts out for a little while

 

I usually wake up feeling okay. I take my lanoprazole for acid reflux and go through the day. But sometimes around 5 or 6 in the evening I will get extremely tired and fatigued, semi-nauseous, heart rate will go up and gassy/bloaty. Anyone else experience this or just want to share how they are coping?

 

Thanks,

Jesse

 

 

 

 

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cyclinglady Grand Master
cyclinglady
Posted

Well, I've been gluten-free for three months.  I resolved my minor bloating and "rock" feeling in my gut (stomach not emptying) within the first two months.  My stomach issues started after I tested positive on my blood work and before I had my biopsy done (I ate, literally, a loaf of artisan bread a day!)  Now, I'm dealing with my anemia and whacked out thyroid.  Like you, I start off just fine.  By afternoon, I'm having another coffee and I'm severely dragging (like right now!).  By 10:00, if I'm not in bed, I start to get nauseous not from what I ate, but from fatigue.  I've clearly hit the wall!

 

I'm the Queen of Work Breaks!  Ha!  One of the reasons I'm always checking this site!  Break time!!!!

srall Contributor
srall
Posted

Sadly I have been gluten, dairy, corn and soy free for over 3 years, and I still feel the absolute best every morning, until I eat something.  Even after my morning cup of coffee I still feel great.   Until food.  

 

My feeling is that I have a leaky gut that just needs to be addressed once and for all.  I feel like I should go on the GAPS diet but after already giving up so much I'm just not psychologically ready.  

 

I will say that I still feel about 4,000,000 percent better than I did 3 years ago so I know that everything I've done so far is working.  I just need to find the final piece of the puzzle.

HumanDecency Contributor
HumanDecency
Posted
  • Author

I find it so hard to articulate. Plus I"m dealing with what I consider to be anxiety, but none of my doctors seem to be too worried about it. It sometimes feels like something else is wrong and there is just this impacting sense of doom. I don't know, I think I feel mortal now. So when I do have an episode... it's hard to put into perspective.

 

I just wish there were some guidelines. I'm a very a to b to c type of person. My specialist tells me that these other concerns aren't really related to my condition. So I got a new specialist, but I can't see him till August. So, it's a waiting game now.

 

I hope you both finally find the missing pieces of your puzzles.

cyclinglady Grand Master
cyclinglady
Posted

A month ago, I rode 45 miles on my bike with friends -- not super strong, but steady.  Agreed to do a century ride in November.  I had this Celiac thing down!  A few days later, I hiked with my daughter and friends in the Santa Monica Mountains to see the location where they filmed the TV show,  MASH.  Brought my gluten-free food -- no problem.  A few days later, I wake up feeling ill, throw up, wash my hands, and lay down on the floor and passed out.  Eyes hemorrhaged, nose bled like crazy, and I awoke with my head laying in blood.  I called for help and my husband and daughter freaked.  They called 911 because I must have attempted to get up and wrenched my back.  I was in shock, very low BP, back pain, and the paramedics thought "grey-haired woman in her 50's must be having a heart attack.  

 

Good news, no heart attack.  Bad news:  fracture of the vertebrae, but they didn't really focus on the back pain.  Mentioned a fracture, but I didn't pay attention.  Admitted to the hospital for stress test, etc. based on two weird EKG's.  I followed up with my PCP two weeks later and he reviews the files electronically from the hospital.  A fracture?  Now waiting for a bone scan scheduled in August (vacation coming up soon).  

 

I feel like I'm 80 years old now.  So, tired.  So hard to stay focused.  

 

I feel bad for those with intestinal issues.  Luckily, I  know all my food intolerances and I'm fortunate that my husband has be gluten-free for 12 years, so I do have the gluten thing down.  But, I never would have realized how much damage I was doing to my body for the past twenty years.  Twenty years of being anemic off and on, hyper and hypo thyroid, early menopause, fibroids, allergies, and now bone damage.  

 

Now, I understand the importance of getting family tested.  Just because you don't have major symptoms doesn't mean you don't have damage going on in your body! 

 

Okay,  time to make tacos.  Pity party is over.  Thank you Celiac.com friends for being there!  

srall Contributor
srall
Posted

A month ago, I rode 45 miles on my bike with friends -- not super strong, but steady.  Agreed to do a century ride in November.  I had this Celiac thing down!  A few days later, I hiked with my daughter and friends in the Santa Monica Mountains to see the location where they filmed the TV show,  MASH.  Brought my gluten-free food -- no problem.  A few days later, I wake up feeling ill, throw up, wash my hands, and lay down on the floor and passed out.  Eyes hemorrhaged, nose bled like crazy, and I awoke with my head laying in blood.  I called for help and my husband and daughter freaked.  They called 911 because I must have attempted to get up and wrenched my back.  I was in shock, very low BP, back pain, and the paramedics thought "grey-haired woman in her 50's must be having a heart attack.  

 

Good news, no heart attack.  Bad news:  fracture of the vertebrae, but they didn't really focus on the back pain.  Mentioned a fracture, but I didn't pay attention.  Admitted to the hospital for stress test, etc. based on two weird EKG's.  I followed up with my PCP two weeks later and he reviews the files electronically from the hospital.  A fracture?  Now waiting for a bone scan scheduled in August (vacation coming up soon).  

 

I feel like I'm 80 years old now.  So, tired.  So hard to stay focused.  

 

I feel bad for those with intestinal issues.  Luckily, I  know all my food intolerances and I'm fortunate that my husband has be gluten-free for 12 years, so I do have the gluten thing down.  But, I never would have realized how much damage I was doing to my body for the past twenty years.  Twenty years of being anemic off and on, hyper and hypo thyroid, early menopause, fibroids, allergies, and now bone damage.  

 

Now, I understand the importance of getting family tested.  Just because you don't have major symptoms doesn't mean you don't have damage going on in your body! 

 

Okay,  time to make tacos.  Pity party is over.  Thank you Celiac.com friends for being there!  

That is quite a story.  Realizing that I have an auto immune disease and that I will still have very bad days even when being as careful as humanly possible has been one of the hardest things to come to terms with.   

Barbarara Newbie
Barbarara
Posted

Just curious: Is it normal to wake up feeling pretty good and then just deteriorate throughout the day? I'm trying to pin down if this is a normal progression of the illness, a symptom with my acid reflux or if I am glutening myself somehow. I do not believe it is the latter as I am pretty strict on cross contamination and the like.

 

Although I may have an issue with nuts. I'm going to cut nuts out for a little while

 

I usually wake up feeling okay. I take my lanoprazole for acid reflux and go through the day. But sometimes around 5 or 6 in the evening I will get extremely tired and fatigued, semi-nauseous, heart rate will go up and gassy/bloaty. Anyone else experience this or just want to share how they are coping?

 

Thanks,

Jesse

Hi Jesse,

I had been taking omeprazole when I was IDed.

The lanoprazole may be keeping you from getting better.  No one should take it for more than a couple months.  After that it can prevent you from digesting and absorbing your food.   This is what my chiropractor explained.  If you have acid reflux, your gut may need more natural therapy. 

 

My chiro is also a clinical nutritionist and applied kineseologist and also has celiac. He understands from within what can happen when your gut is really messed up.  I'm hugely improved from 2 years ago when I first started seeing him, but still have a long way to go.

 

I've found that MDs do not 'get' gut issues. 

 

I'm reporting what happened to me and it may not work for you. 

 

Oh.  In addition to gluten, I also react to

corn

dairy

eggs

sulfites

MSG-very bad reaction

flouride

chlorine

any type of smoke

alcohol - no alcoholic drinks for me

caffeine

red and green food dyes

spring pollen-very bad

fall pollen

dust

some types of xantham gum

 

I do understand how hard it seems when you just can't figure things out.  I'm sending healing thoughts and blessings your way.

 

Like gas, this too, shall pass. = D

 

Barbara

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Barbarara Newbie
Barbarara
Posted

That is quite a story.  Realizing that I have an auto immune disease and that I will still have very bad days even when being as careful as humanly possible has been one of the hardest things to come to terms wit

 

 

You are so right about not knowing the damage. Thank you for letting us know.  You're inspiring me to be vigilant.  I hope you're doing better.  Like gas, this too, shall pass. = D
cyclinglady Grand Master
cyclinglady
Posted

Thanks for all your well wishes.  I just need more patience.  Have a great evening (what's left of it!)

GottaSki Mentor
GottaSki
Posted

A month ago, I rode 45 miles on my bike with friends -- not super strong, but steady.  Agreed to do a century ride in November.  I had this Celiac thing down!  A few days later, I hiked with my daughter and friends in the Santa Monica Mountains to see the location where they filmed the TV show,  MASH.  Brought my gluten-free food -- no problem.  A few days later, I wake up feeling ill, throw up, wash my hands, and lay down on the floor and passed out.  Eyes hemorrhaged, nose bled like crazy, and I awoke with my head laying in blood.  I called for help and my husband and daughter freaked.  They called 911 because I must have attempted to get up and wrenched my back.  I was in shock, very low BP, back pain, and the paramedics thought "grey-haired woman in her 50's must be having a heart attack.  

 

Good news, no heart attack.  Bad news:  fracture of the vertebrae, but they didn't really focus on the back pain.  Mentioned a fracture, but I didn't pay attention.  Admitted to the hospital for stress test, etc. based on two weird EKG's.  I followed up with my PCP two weeks later and he reviews the files electronically from the hospital.  A fracture?  Now waiting for a bone scan scheduled in August (vacation coming up soon).  

 

I feel like I'm 80 years old now.  So, tired.  So hard to stay focused.  

 

I feel bad for those with intestinal issues.  Luckily, I  know all my food intolerances and I'm fortunate that my husband has be gluten-free for 12 years, so I do have the gluten thing down.  But, I never would have realized how much damage I was doing to my body for the past twenty years.  Twenty years of being anemic off and on, hyper and hypo thyroid, early menopause, fibroids, allergies, and now bone damage.  

 

Now, I understand the importance of getting family tested.  Just because you don't have major symptoms doesn't mean you don't have damage going on in your body! 

 

Okay,  time to make tacos.  Pity party is over.  Thank you Celiac.com friends for being there!  

 

So sorry.  Completely understand being active and then not...but crap I hadn't realized that you were relatively symptom free until now -- given your age and exercise level.

 

Do know that you can get everything back...especially since you have been this able for so long....the best thing any body can do is keep strong and obviously you have.

 

Hang in there...but huge hugs heading to you this evening...RideStrong...when ready ;)

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