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Severe Weakness/ Fatigue Episodes, Dizziness, Brain Fluttering Sensation, Etc...

weakness fatigue brain dizziness

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#1 JoyMurphy

 
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Posted 02 November 2013 - 01:39 PM

I have been gluten free since Feb 2012.  Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted.  To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease.  Now I'm not sure.  The dr.s have no clue and I believe they are ready to send me for a psych consult.  The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it.  My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time.  I have been doing better since the Fasano diet, but these things have stood out glaringly.

I have persisting dizziness and lightheadedness.  Fatigue is severe.  I wake up fine, and do as much as I can before I am a waste case for the rest of the day.  That is between 6-9 am... and then I am exhausted for the rest of the day.  If I rest, I can get a little energy back and it is gone quickly

I feel like a cell phone that can't hold a charge.  I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation.  My face goes grey, my eyes are sunken.  I need assistance getting into a chair.  It takes a few hours before this passes.  I feel like I am trapped in my body.  Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain.  It is very concerning. However, the neurologist has never heard of this before.  (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!)  When these episodes pass, they leave me exhausted for hours to days.   

Please can someone advise if they have had some of the same symptoms?  

My ANA is high, 640   My ttg is around 29.  I live in 100% gluten free house.  Including all of my beauty products.  

 


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#2 notme!

 
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Posted 02 November 2013 - 02:00 PM

i read the title to your thread and said, yes, yes and yes.  i have all those things today (and for another week probably )  because i got cross contaminated from a restaurant on tuesday (and ate my boxed leftovers on wednesday - i don't get obvious symptoms until a few days later)  relating to your celiac, that is how i feel when i have gotten glutened.  is it possible you are getting cc'd somewhere? 

 

or maybe a different problem altogether, but i am not a doctor.  that is just my experience relating to gluten reaction.  and it lasts for a wonderful 2 weeks until the fog lifts....  so even if yours maybe lasts for that long, you might not put it together if it's something you're only doing (say, for me, once every 2 weeks - which i just did :(  )  good luck :)


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#3 SkyBlue4

 
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Posted 02 November 2013 - 02:52 PM

I experience something similar. It feels almost like an internal tremor. Very hard to describe and very scary. I wish I had some advice to offer. :(  


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#4 nvsmom

 
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Posted 02 November 2013 - 04:00 PM

((HUGS)) :(

How is your thyroid? Hypothyroidism can slow one's metabolism by over 15% (I believe that was the number I read but I can't for the life of me find the reference). I was hypo for 15 years, during which time I felt slow, tired easily and tended to consume caffeine and extra calories in a bid to boost my energy levels... it didn't work. 

 

If you want your thyroid checked, I think the best tests are: TSH (should probably be near a 1), Free T4 and Free T3 (should be in the 50-75% range of your lab's reference range), and TPO Ab.

 

How is your blood pressure? When mine drops (like when I move to a standing position quickly) I feel shaky, grey and light headed. Could that be it?

 

Hypogylcemia can give me the shakes and make me weak too; that has improved with cutting carbs and gluten.

 

What is your tTG reference range? I would guess 29 is still high. If so then your recovery is very slow, or you are being glutened... somewhere.

 

Best wishes. I hope you find an answer.


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#5 IrishHeart

 
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Posted 02 November 2013 - 04:44 PM

The "Fasano diet"  as I understand it is prescribed when people are not responding to a "typical"

G F diet (for a variety of reasons)

and it means whole foods, no packaged gluten-free items and eating out is a no-no because there is no way to control CC.

 

However, you report "3 accidental exposures". IMHO, those are the likely culprits, hon.

 

You live in a 100% G F house, so where is the exposure coming from?

 

That is probably causing these symptoms, because I had the same ones before I was G F.

 

It's not psychosomatic. No one makes up this sensation.

 

I always go with the obvious culprit before trying to sort out the other potential causes.

 

P S Are you the same Joy I "met" on GD's site? just curious.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 JoyMurphy

 
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Posted 03 November 2013 - 03:54 AM

i read the title to your thread and said, yes, yes and yes.  i have all those things today (and for another week probably )  because i got cross contaminated from a restaurant on tuesday (and ate my boxed leftovers on wednesday - i don't get obvious symptoms until a few days later)  relating to your celiac, that is how i feel when i have gotten glutened.  is it possible you are getting cc'd somewhere? 

 

or maybe a different problem altogether, but i am not a doctor.  that is just my experience relating to gluten reaction.  and it lasts for a wonderful 2 weeks until the fog lifts....  so even if yours maybe lasts for that long, you might not put it together if it's something you're only doing (say, for me, once every 2 weeks - which i just did :(  )  good luck :)

Hi Arlene,

These things definately were present and worse at the time of a gluten reaction.  But they continue when there is no gluten reaction.  My gluten reactions are pretty severe and last approx 5 weeks.  I haven't had one for a while.  That's not to say that there couldn't be traces that get through in a restaurant here and there, but I don't really go to them as much anymore at all.  

Since the super restrictive diet, lots of things have calmed, some things seem to be getting worse or standing out....These are the things.  So I wonder, could it be ongoing damage that hasnt healed yet? Or is it something else.  If it's something else.  I have exhausted the drs. in this city.

It is nice to hear that you feel these things too.  Do you feel the vibrating/ fluttering sensation in your brain?


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#7 JoyMurphy

 
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Posted 03 November 2013 - 03:55 AM

I experience something similar. It feels almost like an internal tremor. Very hard to describe and very scary. I wish I had some advice to offer. :(  

SkyBlue, have you felt in inside your head?


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#8 JoyMurphy

 
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Posted 03 November 2013 - 04:03 AM

((HUGS)) :(

How is your thyroid? Hypothyroidism can slow one's metabolism by over 15% (I believe that was the number I read but I can't for the life of me find the reference). I was hypo for 15 years, during which time I felt slow, tired easily and tended to consume caffeine and extra calories in a bid to boost my energy levels... it didn't work. 

 

If you want your thyroid checked, I think the best tests are: TSH (should probably be near a 1), Free T4 and Free T3 (should be in the 50-75% range of your lab's reference range), and TPO Ab.

 

How is your blood pressure? When mine drops (like when I move to a standing position quickly) I feel shaky, grey and light headed. Could that be it?

 

Hypogylcemia can give me the shakes and make me weak too; that has improved with cutting carbs and gluten.

 

What is your tTG reference range? I would guess 29 is still high. If so then your recovery is very slow, or you are being glutened... somewhere.

 

Best wishes. I hope you find an answer.

Nicole, I asked to see the endocrine doc,  I was worried that my blood sugar seemed a bit low, my PCP wasnt concerned, but she did give me the referal.  The ED was not thrilled to see me and wanted to know why I was even there.  Again, everyone tells me that my high ANA means nothing.   He did check a few thyroid labs, and my cortisol.  He called and said everything was pristine.  

But I did find myself drinking more coffee esp in the afternoon, just to get by and that would be on a good day.  My weight has stableized and has stopped dropping. Before I got sick I was wearing a size 16 pants and now I'm in a 4 or a small and they fall off me.  Not that I'm complaining about that......all those years in Weight Watchers....LOL...but it's not normal.

I do try to eat when I get like dizzy, b/c I feel like that will make a difference, but it doesn't.  My blood pressure is all over the place.  Lately its been more normal, but it has been low.  And I did have a tilt table test, and it did drop on the table, but it stablized quickly.  But I will be dizzy driving in the car.....or just sitting.  It does get worse when I stand quickly, but it definately happens when sitting too.


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#9 JoyMurphy

 
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Posted 03 November 2013 - 04:37 AM

The "Fasano diet"  as I understand it is prescribed when people are not responding to a "typical"

G F diet (for a variety of reasons)

and it means whole foods, no packaged gluten-free items and eating out is a no-no because there is no way to control CC.

 

However, you report "3 accidental exposures". IMHO, those are the likely culprits, hon.

 

You live in a 100% G F house, so where is the exposure coming from?

 

That is probably causing these symptoms, because I had the same ones before I was G F.

 

It's not psychosomatic. No one makes up this sensation.

 

I always go with the obvious culprit before trying to sort out the other potential causes.

 

P S Are you the same Joy I "met" on GD's site? just curious.

irish,

i'm back b/c I miss you.  yes it's me. 

The exposures...one last November...I used the wrong seasoning packet in my crockpot...I bought it w/o double checking the ingredients b/c I thought I used it before and it was fine.   WRONG....within 45 minutes I started to get sick.  The stomach issues subsided within the first few days and I was left a waste case with severe neuro issues and bone pain for 5 weeks.  Doc tried me on budesonide to help shorten the time I was sick.   

Next exposure... Dec 26 at a popular boston restaurant, well known for gluten-free menu....again within 45 mins....another 5 weeks.  Doc had me change way I took budesonide to make it more responsive and get into system quicker...I was a bit better, but still another 5 weeks...he then at the end changed me to prednisone.   

Though even after weening off the steroids, a few days later I was still feeling these weird neuro things...It's like a disconect.  My face is like a blank stare, and I just don't seem present at all.  They checked me for seizures.  there was something abnormal in my first eeg, but it was more consistant with migraines, and I don't have those.. I did the ambulatory, but I didn't have an episode then.  They don't happen every day or every week.  Maybe once a week, or at least 3x a month.  

Now back 1.5 yr ago, when I was first diagnosed, I was so sick I couldn't walk.  those symptoms were more severe then.  They calmed down a bit, but I noticed them getting worse this summer.

Third exposure...April...went to Sandals...where they promissed my husband that they welcome severely sensitive celiacs all the time....ya....I was contaminated 2x!  Same restaurant.  I knew that something was off...my stomach was off and  I was dizzy again.  chalked it up to too much rum punch...still feeling my way around this whole celiac thing....then I find out the corn chips they told me, of course they are gluten-free...were fried with the chicken patties....about 15 minutes before they promissed they would fry the french fries in their own oil and get me a gluten-free bun.....which the minute i bit into it....it tasted too good.  the second bite I woke up and about spit across the table. long story...we got the money back for the trip.  

I went home and took the prednisone right away, and I was able to function much better.   Where the other times I couldnt function for 5 weeks.  ARGH

I guess there was a fourth time....though that was my reaction to gluten-free oats....really bad.  Totally changed my personality too....

Next time I saw Dr. Leffler, he suggested trying the Fasano diet.  He thought I would freak over it , but it wasnt too different from the way i was already eating..yet it wasn't as easy as I thought.  12 weeks....first 4..only fish, chicken and turkey, fresh fruits, veggies, fruit juice, veggie juice, fresh herbs, salt, pepper, honey.   After week four, added beef, pork , lamb, lemon and nuts (only bought from nuts.com...no risk of contamination).  Nothing processed nothing touched by humans at all...

Now I bake a lot, esp for my kids.  I would rather give them something I can control, and something that I have perfected and tastes great, than something in a box...I don't generally eat that stuff,  but I would occasionaly have a bite.  My biggest fear was losing all the other gluten-free grains.  Now I really don't care much at all about that.  I felt much better on the Fasano.   So I guess I'm trying to stick to it not that it's done.  Last night I had Rudy's gluten-free stuffing (i usually make my own from baked breads..but i'm trying to simplify things)....I was up all night.

Since the Fasano, I sleep through the night.  I used to be up 5 times a night to go to the bathroom and then couldn't fall back to sleep without swigging the gaviscon.  (i also take 80 mgs pantroprazole and 150 zantac  and my bed is on huge blocks...I just started to cut the zantac).  Those things getting better, the dizziness and wierd episodes remain.  I felt that they were getting worse, but it may be that they are just more pronounced now?  The drs stopped my driving in August.  They thought it might be seizures, but they couldn't prove or disprove.  They started Keppra (it was gluten-free)to see if it made a difference.  It kickstarted my symptoms into high gear.  The episodes were one after another...they usually happen when I'm walking, and it is like walking through mud...this time they came when I was sitting....and they were almost everyday.  I was a mess.....I got off of that drug......I was still having the brain sensations on it....thus not seizures...which Im not surprised....but what the heck?  I can have the episodes without the brain fluttering....I actually hadn't felt the brain thing for months and it came back this summer.  The other thing that is coming back is the joint stiffness...So my fear really after some things got better on the fasano...some things got worse or came  back.....and I am scared as heck to go back to where I was in the beginning.  

But in my gut ( no pun intended) I know I'm not nuts, but I think my file in the hospital (which is huge) says that. 


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#10 IrishHeart

 
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Posted 03 November 2013 - 05:48 AM

I told you before and I'll tell you again...you're not nuts. :) Don't let any doc tell you that, Joy. None of us think you are making things up.

 

If I were you, I'd go back to Dr. Leffler. Ask him what he thinks about the high ANA and the sensations. Unless a doctor (with a specialty like neurology or rheumatology) has knowledge of celiac and its myriad symptoms, they are just going to symptom-treat and send you packing IMHO

 

So, who gave you the steroids? In my opinion (for all that's worth, because I am not a doctor) those things totally screw with a celiac's guts

and adrenal glands and my celiac friend who has taken steroids to control her microscopic colitis becomes a raging ultra- panicky jazzy ball

of energy whenever she takes them. Totally not herself at all. She says they make her feel as if she has had 18 cups of caffeine.  She gets paranoid and she cannot rest or sit still. My short exposure to them (to try and stop intense spinal/bone/neuro pain a couple years ago) convinced me they are not worth ever, ever trying them again. I was so hyped up on them I was trembling and jittery and thought I would burst out of my own damn skin. I felt like I was on speed and my brain was buzzing like mad..

I do not know how anyone takes steroids even though I know they help control serious AI issues, asthma, etc.. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 JoyMurphy

 
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Posted 03 November 2013 - 06:38 AM

I told you before and I'll tell you again...you're not nuts. :) Don't let any doc tell you that, Joy. None of us think you are making things up.

 

If I were you, I'd go back to Dr. Leffler. Ask him what he thinks about the high ANA and the sensations. Unless a doctor (with a specialty like neurology or rheumatology) has knowledge of celiac and its myriad symptoms, they are just going to symptom-treat and send you packing IMHO

 

So, who gave you the steroids? In my opinion (for all that's worth, because I am not a doctor) those things totally screw with a celiac's guts

and adrenal glands and my celiac friend who has taken steroids to control her microscopic colitis becomes a raging ultra- panicky jazzy ball

of energy whenever she takes them. Totally not herself at all. She says they make her feel as if she has had 18 cups of caffeine.  She gets paranoid and she cannot rest or sit still. My short exposure to them (to try and stop intense spinal/bone/neuro pain a couple years ago) convinced me they are not worth ever, ever trying them again. I was so hyped up on them I was trembling and jittery and thought I would burst out of my own damn skin. I felt like I was on speed and my brain was buzzing like mad..

I do not know how anyone takes steroids even though I know they help control serious AI issues, asthma, etc.. 

yes, I don't love the steroids.  Dr. Leffler prescribed to help with the severity of my gluten exposures...I saw him friday, and asked him about a lot of this stuff.  He did say that he has patients with the brain fluttering sensation.  Not a lot, but some.  Which thank god...b/c they neuro guy kept saying, what is that? I have never heard of that.  Maybe its a conversion disorder....argh.

at this point leffler said if I keep having the episodes and severe dizziness, try taking a low dose of the prednisone for 3 days, to see if it calms everything down and it goes away.

primary talked about getting someone to start me on a rheum drug like plavenquil?  I had one doc say she did think it was an autoimmune responce to the MRSA infection I had 2 yrs ago.  I kept telling everyone that was the start of my downfall.  I really havent been the same since then.  And my primary wants to dismiss it...says it has nothing to do with the mrsa....But that kick started everything. The fatigue, the multiple food allergies...the celiacs that has apparently been there all along....who know what else.  I just don't understand why they refuse to look at that


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#12 IrishHeart

 
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Posted 03 November 2013 - 06:53 AM

Me neither, since all the medical lit says an infection can trigger celiac. I think it's entirely possible it's related. (again, this is IMHO)

 

Sorry, Joy. :(  It baffles me why you have symptoms that keep recurring but it sounds as if Dr. Leffler is doing his best to help you.

 

do you mean plaquenil perhaps? If so, you will not be able to take antacids with it. They interact.

 

http://arthritis.abo...a/plaquenil.htm


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 JoyMurphy

 
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Posted 03 November 2013 - 07:14 AM

He is.. I have a repeat endoscopy scheduled in jan. An yes that was the drug.. I did read that about the antacids so i dont think it would be good.
So frustrating.. Of course, i know the mrsa was the infection that threw everything into play.. Dont know why they dont want to discuss that. I think it makes them nervous...pcp told me to stop throwing that word around
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#14 IrishHeart

 
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Posted 03 November 2013 - 07:26 AM

yeah, because that will "make it go away"? so, why can't you say it? I do not get that at all.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 dilettantesteph

 
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Posted 03 November 2013 - 07:38 AM

I definitely agree about continuing to see your doctors for help.  They may find something else that is treatable.  

 

The fact that the Fasano diet seemed to help is an indication to me that you are sensitive to very low levels of gluten and that could be the problem.  I am sensitive to very low levels myself.  I have spent 6 years working on figuring out what to eat with careful elimination/challenge dieting and other methods.  My son is as sensitive as I am which helps a lot.  I also know other sensitives who share what they can eat with me and that helps me find things that are safe.  I read that Hollon Fasano  study and there are foods in their diet which make me sick.  It may be that you need an even more stringent diet.  If you are interested in that, we could talk details.  I believe that I get different levels of glutening from different levels of gluten exposure.  A glutening from a restaurant feels very different to me than an ongoing glutening from low level contamination in my daily diet.

 

As sensitive as I am, and as careful as I have to be, I am currently symptom free.  It is worth every bit of effort.


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