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Anyone Feels Worse In The Morning?

Dozey

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Dozey Apprentice
Dozey
Posted

Hello everyone. I may not be celiac at all but I hope you don't mind me posting. I have my blood test in the morning, if I can make it to the surgery. Mornings are my worst time, I usually feel quite ill, sick, fatigue, and generally just very unwell. Since being so unwell I have developed agoraphobia and find going out very difficult so it is a double whammy for me. I try to be strong and not give into the passing out sensations and shaking but it is so hard. Does anyone else suffer in this way ? Thank you.

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dilettantesteph Collaborator
dilettantesteph
Posted

I was definitely worse in the morning.  I hope you get some answers soon so that you can get better.

IrishHeart Veteran
IrishHeart
Posted

I always felt like hell all day long and I had anxiety and a bit of agoraphobia f develop when I was quite ill before diagnosis (and I am not  shy or anxious by nature at all ). 

 

It's entirely possible that you are feeling this way  from malabsorption and vitamin deficiencies. 

These symptoms (including panic attacks) are consistent with celiac/ gluten

intolerance.

 

The good news is, they disappear off gluten (in everyone I know that experienced this sensation)

Many people on here can attest to this!  :)

 

Take deep, slow breaths, tell yourself you are safe and calm--- and hold onto someone's arm.

You can do this!

 

Positive test or not, you may well be better off  dumping the gluten  IMHO.

 

I wish you all the best.

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 12:03 PM, dilettantesteph said:

I was definitely worse in the morning.  I hope you get some answers soon so that you can get better.

Thankyou, it's horrible to feel ill all the time, as I am sure everyone here knows.

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 12:31 PM, IrishHeart said:

I always felt like hell all day long and I had anxiety and a bit of agoraphobia myself develop when I was quite ill before diagnosis (and I am not  shy or anxious by nature at all ). 

 

It's entirely possible that you are feeling this way  from malabsoprtion and vitamin deficiencies.

These symptoms (including panic attacks) are consistent with celiac/ gluten

intolerance.

 

the good news is, they disappear off gluten (in everyone I know that experienced this sensation)

 

Take deep, slow breaths, tell yourself you are safe and calm--- and hold onto someone's arm.

You can do this!

 

Positive test or not, you may well be better off --off gluten  IMHO

Thankyou, you're all so kind and the reassurance is much appreciated. I am not normally shy or anxious either, and blood tests have never bothered me in the past. Well it's not so much the test as getting there, and the waiting. Last time I practically passed out and the staff had to take me in the staff room, and get me seen by a doctor before I couldd have the actual test. Once I was getting it done, there was no problem.

IrishHeart Veteran
IrishHeart
Posted

I can honestly say I had the same peculiar thing happen to me. I even had to stop driving my car. My reflexes were shot and I felt

like a big old nervous nelly. I kept saying to my hubs "what the hell is wrong with me?" I am a very independent person and it felt so crazy to

have to rely on him to take me everywhere. I clung to his arm like a child. Totally weird.

 

I was so glad to have all that nonsense stop!! :rolleyes: .A few months after DX and off gluten, and I was back to my old self.

 

You're going to be okay tomorrow.  Hang in there.

1desperateladysaved Proficient
1desperateladysaved
Posted

I use to be as tired in the morning as I was at the end of some of my most grueling days.   I wondered why.  NOw, I do not wonder and I try to beware about gluten, and I am getting better.

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Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 12:45 PM, IrishHeart said:

I can honestly say I had the same peculiar thing happen to me. I even had to stop driving my car. My reflexes were shot and I felt

like a big old nervous nelly. I kept saying to my hubs "what the hell is wrong with me?" I am a very independent person and it felt so crazy to

have to rely on him to take me everywhere. I clung to his arm like a child. Totally weird.

 

I was so glad to have all that nonsense stop!! :rolleyes: .A few months after DX and off gluten, and I was back to my old self.

 

You're going to be okay tomorrow.  Hang in there.

I have to my husband with me if I do feel up to going out, and then it's only a few hundred yards. It is crazy I agree. I used to be able to go anywhere on my own, and drive anywhere too. I don't drive now. I also have these strange spacy, not really here feelings which I find quite distressing. Somehow I feel my life is totally upside down.

Jo

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 12:51 PM, 1desperateladysaved said:

I use to be as tired in the morning as I was at the end of some of my most grueling days.   I wondered why.  NOw, I do not wonder and I try to beware about gluten, and I am getting better.

I am pleased to hear you are getting better. I look forward to that too.

Jo

NotMollyRingwald Apprentice
NotMollyRingwald
Posted

Some mornings I do, I think it depends on what I ate in the afternoon and dinner.

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 2:27 PM, NotMollyRingwald said:

Some mornings I do, I think it depends on what I ate in the afternoon and dinner.

I try to have a dinner free of gluten if I can but then I spoil it by having a cake or something. I am not trying to go gluten free till I have had the blood test

IrishHeart Veteran
IrishHeart
Posted
  On 4/28/2013 at 2:19 PM, Dozey said:

I have to my husband with me if I do feel up to going out, and then it's only a few hundred yards. It is crazy I agree. I used to be able to go anywhere on my own, and drive anywhere too. I don't drive now. I also have these strange spacy, not really here feelings which I find quite distressing. Somehow I feel my life is totally upside down.

Jo

 

Jo,

I called this ordeal I suffered for nearly 3 years  "my time in gluten head hell". I frequently felt as if I were lost in space. It affected my ability to

articulate, comprehend new information and  multi-task. My short term memory suffered as well.

It is hard to describe, unless you live it. There are many published medical articles that explain the neurological impact of gluten and celiac disease.

I really think this may be your problem.

 

All of that resolved off gluten. There was a time when 3 nuerologists told me the ataxia, the neuropathy and the parasthesia I suffered would be something I would have to learn to live with and take drugs to control.

 

They were wrong. I take no medications and I am fine.

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 2:34 PM, IrishHeart said:

Jo,

I called this ordeal I suffered for nearly 3 years  "my time in gluten head hell". I frequently felt as if I were lost in space. It affected my ability to

articulate, comprehend new information and  multi-task. My short term memory suffered as well.

It is hard to describe, unless you live it. There are many published medical articles that explain the neurological impact of gluten and celiac disease.

I really think this may be your problem.

 

All of that resolved off gluten. There was a time when 3 nuerologists told me the ataxia, the neuropathy and the parasthesia I suffered would be something I would have to learn to live with and take drugs to control.

 

They were wrong. I take no medications and I am fine.

I do hope this is the problem as it means I can get out of it. I just feel sort of unreal, if you know what I mean. As you say it is difficult to describe if you haven't been there. And I expect everyone would describe it differently. I don't want to take drugs so you have given me hope. Thank you. I was told by one doctor that I was severley depressed and wouldn't get better without anti depressants which I definitely don't want. I knew I wasn't suffering depression but it is really hard to get doctors to see anything else.

IrishHeart Veteran
IrishHeart
Posted

This is the same path so many of us on here have walked. Doctors symptom- treat rather than get to the cause of the symptoms.

The more you tell me, the more you sound like the rest of us.

 

 

Open Original Shared Link

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/28/2013 at 4:15 PM, IrishHeart said:

This is the same path so many of us on here have walked. Doctors symptom- treat rather than get to the cause of the symptoms.

The more you tell me, the more you sound like the rest of us.

 

 

Open Original Shared Link

I am so pleased to have found you all, you have given me hope. Even if I don't test positive for celiac I will try going gluten free and see if that helps. Thank you all so much for your support.

Jo

IrishHeart Veteran
IrishHeart
Posted

With all of my heart, Jo, I really think you should give it a good strict trial. Give it a few months.

Some people test negative on blood tests and they are celiacs nonetheless.

I know; I am one of them.

 

If your brain MRI is normal and the doctors have no other explanation, odds are pretty good it's gluten.IMHO

Adalaide Mentor
Adalaide
Posted

It really does sound a lot like no matter how the test goes, giving the gluten free thing a good go will likely make a huge difference in your life. I am insanely independent, and possibly obnoxiously outspoken. I spent years leaning on my husband for everything. I wasn't really sure what it was, but I just wasn't up to doing all of the doctors and all that nonsense by myself. I just couldn't handle it. Didn't want to, wouldn't go alone. Now, after a year gluten free I can put on my big girl pants and go to the doctor all by myself.

 

Test day is just one day, and while I have dealt with crippling anxiety I also know what it means to have support through it. You'll have a cheerleading squad here pulling for you.

Dozey Apprentice
Dozey
Posted
  • Author

Thank you IrishHeart and Adelaide. I haven't had any MRIs and the way this morning went I don't think I will be able to. Got to the surgery, was anxious before I went, got the test done then started to feel faint, so had to lie down a while. Probably 10/15 mins feeling awful and shaking. Nurse said to come home to bed and call ambulance if not better. I don't want to go to hospital, so just resting on settee. Calming a bit now. i know from experience thes attacks wear off after about an hour. It is comforting to know I am not alone with this.

Jo

IrishHeart Veteran
IrishHeart
Posted

That. dear Jo, sounds like a classic panic attack. They are awful, I know. 

This is a celiac symptom.

I hope you get your results soon.

Keep us posted.

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/29/2013 at 10:42 AM, IrishHeart said:

That. dear Jo, sounds like a classic panic attack. They are awful, I know. 

This is a celiac symptom.

I hope you get your results soon.

Keep us posted.

I hate panic attacks, there is nothing you can do to stop them! Got to go for results next Monday, unless they phone sooner.

Jo

IrishHeart Veteran
IrishHeart
Posted

well, :) being gluten free can stop them if that's what is fueling them.. 

 

Try to relax now and enjoy your day. 

Dozey Apprentice
Dozey
Posted
  • Author
  On 4/29/2013 at 11:04 AM, IrishHeart said:

well, :) being gluten free can stop them if that's what is fueling them.. 

 

Try to relax now and enjoy your day.

Thanks I will.

Jo

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