Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Feels Worse In The Morning?

Dozey

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

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

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Dozey Apprentice
Dozey
Posted
  • Author

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

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

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

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

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

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

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

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,759
    • Most Online (within 30 mins)
      7,748
    maglife
    Newest Member
    maglife
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Help with genetic testing

      By Scott Adams · Posted

      The genetic testing results you provided indicate that your child carries two copies of the HLA-DQ2.5 beta chain (DQ Beta 1 *02:01, *02:01), which is a high-risk genetic marker for celiac disease. However, the alpha chain (DQ Alpha 1 *05:01, *05) is only partially present, as HLA-DQ2.5 typically requires the alpha chain *05:01 paired with the beta chain 02:01. Since your child has two copies of the beta chain (02:01) but only one full *05:01 alpha allele (the other appears truncated as *05), this suggests they are heterozygous for HLA-DQ2.5 rather than homozygous. The term "permissive for celiac disease" means your child has genetic susceptibility but not necessarily the highest-risk genotype (homozygous DQ2.5). Since celiac disease development also depends on environmental triggers and other factors, further testing (such as antibody screening or biopsy) may be needed to confirm a diagnosis. Consulting a genetic counselor or gastroenterologist can help clarify these results and next steps.
    • Jenny (AZ via TX)
      gluten-free stool softener needed for after surgery

      By Jenny (AZ via TX) · Posted

      Thanks!
    • DebJ14
      Finding gluten free ingredients

      By DebJ14 · Posted

      As my doctor said, you don't have to eat breakfast food for breakfast.  I may have a leftover piece of chicken and left over squash or eggs or I am actually more likely to skip breakfast as I do intermittent fasting.  In that case I eat lunch around 11:30 and have some guacamole and a salad with chicken or tuna.  For dinner I have pork, shrimp, chicken, lamb, or turkey with half a baked sweet potato and some broccoli, green beans, beets, carrots or cauliflower.  I do not eat any grains on the advice of my doctor.  I do not eat commercially processed products, even if they say they are gluten-free.  I make Warrior Bread every few weeks.  It has no yeast and contains almond flour and dried sweet potato.  Very tasty too.  A good book to help in this regard is No Grain, No Pain by Peter Osborne.  Thankfully, I can eat coconut and nuts and use those flours in baking and also use nut milks in cooking.  Since I am allergic to chocolate and vanilla, lemon is my go to flavor for something sweet.  My migraines totally disappeared once I went gluten and casein free.  I can occasionally eat certain high fat cheeses that are low in casein, as well as grass fed butter.  I use lots of Organic Olive and Avocado oil. The problems I thought I had with nightshades went away when I went fully organic.  And, the rest of my issues went away by avoiding the foods I tested positive to as well as avoiding all grains. I will be the first one to say that it is a very expensive way of eating, but thankfully we can afford to eat that way.  The good news is that I take no prescription meds at age 72.  At 54 before diagnosis, I was a mess and on a boatload of pharmaceuticals.  
    • lmemsm
      Finding gluten free ingredients

      By lmemsm · Posted

      With that many foods removed from your diet, what do you eat?  I also have histamine issues and migraines so that takes out certain trigger foods and high histamine vegetables.  Have allergies to coconut and issues with nuts so those are out.  I'm beginning to think I may have to remove dairy and some of the grains beyond wheat to get allergies under control.  Just having so many issues figuring out what to make at meal times.  What's a typical breakfast look like for you?  Thanks.
    • knitty kitty
      Burning sensation when I wake up

      By knitty kitty · Posted

      @Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide).  They are available over the counter.   Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.  
×
×
  • Create New...