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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Dozey

Anyone Feels Worse In The Morning?

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

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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.

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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.

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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.

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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.

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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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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

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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

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

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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

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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.

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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.

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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.

 

 

http://www.livingwithout.com/issues/3_5/celiac_disease_qa-1020-1.html

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

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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

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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.

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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

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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.

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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

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

 

Try to relax now and enjoy your day. 

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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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