Jump to content
  • 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

More Questions!


Dozey

Recommended Posts

Dozey Apprentice

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


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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!

Dozey Apprentice

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

IrishHeart Veteran

Not crazy at all! I was THRILLED to learn it was celiac after years of living in hell. It was something treatable

and I was not "making things up" and I got to do the "I told ya so" dance! :D .

 

Believe me, many of us "get that part". 

nvsmom Community Regular

Yep... the "I told you so dance". Did you notice Irishheart even has it in her signature?  LOL

GottaSki Mentor

The "I told you so dance" is nice -- validation is huge and sadly many of us had to fight far too much to obtain it.  This above all else is why I hang around celiac.com -- when I stumbled in four years ago -- others that were already dancing helped me.

 

Welcome Jo!

 

I hadn't seen your other questions...but keep reading and keep asking questions.  Good Luck with your results :)

Dozey Apprentice

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


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

hey guys, Jo is in the midst of a gluten challenge, so we are cheering her on!

 

https://www.celiac.com/forums/topic/101386-anyone-feels-worse-in-the-morning/?hl=%2Bdozey#entry865664

 

and yes, I am dancing because at one point, I could not even walk without assistance. Lisa was in the same boat, Jo and she and I

are both so much better!

 

..........so do not despair. Healing happens!

Dozey Apprentice

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

IrishHeart Veteran

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

Dozey Apprentice

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

IrishHeart Veteran

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. 

Dozey Apprentice

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

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748

    Sonya Haskin
    Newest Member
    Sonya Haskin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.