Dozey

Thanks IrishHeart, it's such a relief to know someone else knows what I'm talking about. My son often says it will be nice when I start making sense

I will take a look at that article, and thank you for always responding.

Jo

Since I have been ill I have been having trouble with bad/ disturbing dreams, waking between 3- 5am ish and being full of fear. My hands are clenched and my shoulders up around my ears! Then I can't get back to sleep and feel awful for the rest of the day. It doesn't happen every night and I'm wondering if it has to do with what I am eating. I suppose it would be an idea to keep a food diary but I don't know what to look for when. Does anyone have any ideas please? Would it be something I had at lunch or dinner, how long would it take for food to affect me like that. Grateful for any ideas. Thank you

Jo

I noticed I got really insecure when I continually eat gluten, to the level where I can now understand why I stayed in an emotionally abusive relationship for 3 years. Celiac's can mess with more than just your gut. Well, the messing with your gut can mess with your mind. The types of losses in courage and determination can be associated with depression, which (according to this article: Open Original Shared Link) is over 4 times more likely for people with celiac disease. This is because over 90% of our serotonin is produced by the gut (Open Original Shared Link). If you listen to or read any anti-depressant medication advertisement, they mention dopamine and serotonin as being key to "fixing" depression. But if your gut is damaged, you can't absorb nutrients or produce serotonin --> depressive symptoms. The good thing is, that if your loss of determination is caused by a nutrient/hormone imbalance from celiac's then once your body heals on the gluten free diet, you should go back to what you thought of as normal. I've found it really helpful to have people to talk to about all of the issues as well. I

 

(Full disclosure, I do study psychology and have a personal interest in the biological basis for pathologies, but I haven't done any personal research on these topics. I've cited my sources so feel free to take a look and form your own opinions)

Thank you EmiPark. It is good to be able to discuss your fears etc with people who understand. I have been feeling a bit low just lately and getting it all out on here helps a lot. I am just expecting to be told the blood test is negative.

Jo

Hi There Jo!!!

 

Yes....I lost those things along with a thriving career over the past fourteen years -- others have lost as much or more.

 

Here is the good news -- you can get things back -- a little at a time that small desire to do a bit of crafting or wanting to walk out the front door -- will happen. 

 

Take it slow - finish all the necessary testing -- then remove gluten -- then be patient -- I was not born patient - far from it -- Celiac taught me patience -- even more good -- those of us that lost much....greatly appreciate the little stuff and I for one enjoy finding joy in all the little stuff!

 

Hang in there

Hi Lisa and thank you.

It seems odd to think food can cause so much trouble, especially the psychological aspects. I was begining to think I was going mad till I read others suffer the same things.

Jo

i have been feeling braver lately - my brother moved nearby and we are going camping over memorial day weekend.  we were talking about things to keep the kids occupied and one of his suggestions was badminton.  he told my husband:  she was so good, and so aggressive when we were younger.  and I WAS!  nowadays, i can't even throw or catch a ball.  don't have the desire to try.  but when he was talking about the badminton, Old Me wanted to whip his a$$ just for a second.  Old Me is still in there, i hope to find a little more of her every day.  i hope you find your answers, jo

Thanks Ariene. That's just how I feel, no energy and no desire. A bit of crafting interest is creeping back, but not like I used to be. I hope you ger back to yourself soon.

Jo

Hi Adalaide. Thank you for the encouragement. I have not yet been diagnosed Celiac, but something is not right with me. I love all animals, but horses and ponies are beautiful, that's a fact.

Jo

That made me smile. Thank you. I have been housebound for a few months but getting out a bit now, as long as I have someone with me and don't go too far. Sometimes it seems immpossible to get back to how I used to be.

Jo

Could this illness rob you of character, determination and courage? I haven't always been this way but this last year and a half seems to have taken all those qualities from me. In the past I have been ice skating, horse riding, ski ing and even abseiled down a quarry. I have driven everywhere and towed a caravan, with none of this anxiety. Now I seem to feel afraid about doing anything.

Jo

I have similar issues with drugs, which is why I put up with chronic pain rather than take the stuff they give me,

so no need to explain. The one that did not make me yucky for days was when I took just  a teensy bit of xanax

before a dental surgery that was going to last over an hour. Without it, I may have balked at doing it and it had to be done..

 

I am just suggesting it as a therapeutic measure to get you out of the house.

Certainly, you should always do what's best for you.

I appreciate that. Maybe it's going back to the car crash we had in 2004, although I recovered from that and have driven myself about since, even did a stint as a taxi driver. Lately I just have difficulty going anywhere in the vehicle. I don't think we wil crash or anything but maybe it's just general anxiety.

Jo

But for you to get to the bottom of this and stop the madness and get your life back, you may well have to do this, Jo.

 

I am not a drug pusher, but maybe you can ask the primary care doc for a small dose of xanax to calm you enough to get you to doctor visits. IMHO

I know this sounds as though I am being negative about everything but I can't take drugs. Even ordinary painkillers have an effect on me. I was given Diazepam some years ago and it just knocked me out for a few hours, then I felt worse when I woke up. So now I am afraid of taking drugs of any kind.

Jo

Thanks Irish Heart. I can't walk very far which of course isn't helping the agoraphobia. My husband insisted on getting a wheelchair and although it just doesn't feel right being in it, it does mean I can get a bit further without worrying about ending up on the floor. So, when I feel well enough I try to go a bit further each outing. If I do too much I pay for it the next day, so I am trying to pace it.

I had my blood test yesterday but typical for me can't get to see my new doc until next Friday. I am dreading him saying I need an endoscopy because there is no way at the moment. I nearly passed out at the surgery and that's only two miles away. The hospital is 23 miles. An epic journey for an agoraphobic!

Jo

Thankyou IrishHeart, Lisa and Nicole. This is a lovely forum and I have found some welcome comfort here. And even if I am not Celiac I hope I can still keep visiting. Yes I had noticed that happy little dancer!

Jo

I recently had a positive celiac panel test and have been gluten free for 45 days.  I also have hypothyroid disease and had a positive ANA 1:320 speckled.  The Rheum. at Wake Forest was unimpressed with that number and me not having any joint pain but rather inflammation and tendonitis which is believed to be caused by celiac.  My recovery process has been slow but is improving, however I wanted to know if anyone else has experienced or is experiencing whole body stiffness.  I am stiff the entire day.  I know thyroid issues can cause stiffness and I also know I am deficient in Vit D, Magnesium, Vit B and maybe more. 

 

Sometimes I think I'm crazy, I am doing therapeutic massage and she said my entire body was tight and I had muscle knots everywhere.  She used trigger points and it helped but here I am again this morning stiff.

 

Ugh.  I have three small children and it kills me to not be the way I used to be.

Hi Tigerlilley

I have a lot of stiffness especially after sitting for any time, I am also quite tense and often have my shoulders up around my ears, and my teeth clenched. I am not diagnosed with Celiac but have had the bloods done this morning. I have hypothyroidism and b12 deficiency. Also getting tested for vit D def. hope things improve for you soon.

Jo

Hi Jo

Well, they sound like gluten-related symptoms to me. (I had almost all of those, too) but they could also be

caused by something else, so it is difficult to say for sure.

Here is a list of possible celiac- related symptoms and conditions.

Open Original Shared Link

I know you are awaiting your test results, so you may wish to read a little bit while waiting.

Hang in there!

Hi IrishHeart

I know they are also symptoms of b12 def which I have, but I am clutching at straws here ☺. I am also being tested for vit D def and I don't know what else as the nurse said the doctor had asked for several tests. She said he is very thorough so I am hopeful of some answers this time. Sounds crazy but In a way hope it is Celiac, then at least I will know something.

Jo

I read on another website that gluten can't be absorbed through the skin as the molecules are too large. Is this not right?

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

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

Hope no one minds the constant questions. But do thes sound like symptoms too?

Ringing in head/ears

Feeling faint even when resting

Burning itching feet

Disturbed sleep/ disturbing dreams

Strange blurry vision, almost like being underwater.

Trembling in limbs and some times whole body shaking

Typing words wrong way round

Feeling exhausted by conversation

Dry mouth/ sticky nasty taste in mouth

Thank you

Jo

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

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

A couple times lately I felt good at 8 am also!

That's good to hear.

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.

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.

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

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

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!!  .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