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

Need Help.


TomC

Recommended Posts

squirmingitch Veteran

Ice pack on your forehead Tom. Sorry you're having the headaches.sad.gif Yes, people report headaches while going through withdrawal. and for what it's worth I had a lot of that shaky feeling a lot of the time. And being able to hear your heart beat --- very annoying.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I agree with the icepacks. Try to stick it out. Normally it (the heavy withdrawal) does not last too long (although every day can seem too long :rolleyes: )

TomC Rookie

Thanks everyone! You're helping me stay calm!

  • 2 weeks later...
TomC Rookie

Hey guys, I need some advice again.

I went gluten/dairy free about three weeks ago.

Before going gluten free I suffered with digestion problems, hand and joint pain.

After going gluten free, as I wrote in earlier posts, I had weird withdrawal symptoms. Headaches, muscle twitching and shaking at night. All of those symptoms have gone away now on week three. No more headaches, no more shoulder and hand pain.

But now my back is in terrible discomfort. Last week I did a light work out and the next day it seemed to have messed with a nerve on my back. It wasn't so bad but each day of going to work made it worse, until yesterday I couldn't take it no more. Now I can barely do anything.

Does this sound like a withdrawal symptom or more like nerve damage? I'm thinking the gluten attacked my nerves and they are/were super sensitive.

pricklypear1971 Community Regular

All is fair in love, war and gluten.

All I can tell you is that for the first 6 months weird crap is going to happen. I thought I'd wake up one morning with wings sprouting out of my back.

Your body is "rebooting". It will make a few bad starts if you know what I mean??

Start tracking your food - that will help you pinpoint an additional food issue if you have one. And drink water. Lots of it.

You may notice weird stuff, just try to breathe deep and realize most of it will pass.

I don't remember if you had your vitamin levels checked or not, but if you didn't you should- and you may need some supplaments: iron, b's, d, cal/mag, k.

TomC Rookie

Thanks. Six months is a long time. I have a job and only so much sick time left ! But I guess I have no choice but to deal with it.

I have an appointment next week with the doctor. Right now I am supplementing with multivitamins and other supplements. I pretty much eat as healthy as I possibly can...Organic foods, totally gluten free.

pricklypear1971 Community Regular

Everyone makes their way through this. Have you read the fitness board here? there may be some hints in there.

Personally, I notice gluten makes a big difference in stamina and cramps. It's where I feel it first. Perhaps you're just going to have to take it easy for a while.

And alternate hot and cold on the painful area. Mostly cold. What about a good masseuse?


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



Celiac.com Sponsor (A8-M):



TomC Rookie

Alright thank you for the all the responses.

I been staying out of the fitness section because it depresses me to read about fitness and nutrition when I feel like I can't even move very well. haha.

A masseuse would be nice right about now.

squirmingitch Veteran

Tom, FWIW, I (hope) have just finished (fingers & toes crossed) going through weird stuff like body parts that out of nowhere swell up, get red, won't move, or you scream when you try to move them. It might last a couple hours or 3 or 4 days. You never know. One day I would drag a leg around then be fine for a week then BOOM! the back of my hand would swell & be as painful as all get out. Weird stuff.

When it happens just go with the flow & try not to panic. Lay down, use a heating pad or an ice pack or a shot or two or three laugh.gif or whatever makes you feel better if anything. Breathe. And keep breathing.

frieze Community Regular

Thanks. Six months is a long time. I have a job and only so much sick time left ! But I guess I have no choice but to deal with it.

I have an appointment next week with the doctor. Right now I am supplementing with multivitamins and other supplements. I pretty much eat as healthy as I possibly can...Organic foods, totally gluten free.

Are your supplements gluten free? and egg free?

TomC Rookie

Are your supplements gluten free? and egg free?

Yes, all of my supplements are gluten free. I barely cut eggs from my diet about a week into being gluten free after noticing I'd have lower back pain the next morning every time I ate some eggs.

MitziG Enthusiast

Ditto the above. When you go off gluten, it is like your body systems kind of go into shock. They don't know how to function properly. It takes time. Just relax, tell yourself weird stuff is gonna happen for a few months.

It is unlikely you have any permanent nerve damage. Get your vit levels checked, rest, relax and ride it out. It gets better. I promise.

TomC Rookie

Hey thanks everyone for the responses. It really helped in keeping me calm in one of the worst times of my life. I struggled for months not knowing what was wrong with me.

Because of the kind of work I do, I am trying to see a chiropractor just to make sure things are in order. I never thought gluten would cause such a wide range of symptoms, from my stomach, hands, shoulders and now my back!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.