Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Where To Begin
0

5 posts in this topic

I dont feel at this point of telling my celiac story as its the same nightmare yuo have all been through.

But, I was finally dianosed with this last month Octobor 20. my doc simply said, "change your diet".

So I have.. I buy all the gluten free goodies in the grocery stores in the gluten free sections.. but at times a recipe calls for something in the "normal" end of the store... So I read lables and no wheat stuff blah blah blah.. Long story short I slow cooked a roast on thanksginvin, and for the next several days I got sooooooo sick

And I am not sure if what I ate caused me to be this sick beucaese I thought I was follwing all the gluten free rules...

but then I started experiencing what we have deamed to be "celiac crisis"-- again, I wont get into my past with all this, but I had no idea this Celiac crisis was the cause of my very sick times.

fast forward to the lasf few days my body has been experiencing the same celiac crisis symptoms.

So - I look up GLUTEN WITHDRAWAL-- is this now the stage I am at with this disease ? Once I detoxy off gluten should I be fine? just like a heroin attict detoxing off of heroin?

I have noticed ssOSOOOOO many things that have gotten better, the tingling in my feet from GUllian Barre I barely feel it anymore... the pains in my chest seem to have subsided quite a bit.. the constant coughing up flem and weekly sinus infections are gone...

IS there something else I need to be doing to ensure i dont experience these gluten withdrawal?.. supplements.. anythig... that is painful and my mind was so fogged up i made some very bad stupid statemens as far as wanting to give up...

Thanks

Ed

0

Share this post


Link to post
Share on other sites


If you have been gluten-free since Oct. 20th, I would think your withdrawal symptoms would be gone by now. It sounds to me like you have gotten cross-contamination somehow.

When you say celiac crisis, do you mean you had to be hospitalized? True celiac crisis is rare, and it is life-threatening. People in celiac crisis usually die from a cross between dehydration and an elecrolyte imbalance. I met someone who had it. She was hospitalized and had to have someone with her every minute because not only could she not stop the D, but she could not stop vomiting even for a few minutes. Someone had to hold her head so that, even though it was mostly dry heaves after a while, she wouldn't choke on her own bile. She was too weak to hold her own head up. Indeed, she was unconscious to semi-conscious most of the time. They couldn't pump the fluids into her fast enough to prevent dehydration. She came VERY close to dying.

I will admit though, that some of the days-long D that some folks here get must SEEM like a crisis. I am lucky. I get a little sick to my stomach, and a little bit of D. Mostly my symptoms are skin-related, brain fog, whimpering jaw pain, insomnia, and a few other goodies.

I suggest you read the "Newbie 101" thread to find out some of the hidden places gluten hides. Then continue reading as many threads here as you can. You'll learn a lot, and you'll get lots of support. Ask lots of questions. There are some REALLY smart people here who can help. :)

0

Share this post


Link to post
Share on other sites

Thank you for your response - and yes I mean the celiac crisis where I felt I had pneumonia like symtoms, hot and cold sweats, brain fog, completely confused and out of it. I called an ambulance and they told me you look sick, can you get someone from your family to take you to the doc because this is not good use for an ambulance... I called my brother but he coulnd get off work and told me to tuff it out for a few hours and would come get me... I started hyperventaling so bad I could barely breath. By the time my brother showed up had fnished a half a bottle of brandy - seemed to be the only thing could stop the shakes etc...so he thinks I'm just drunk and takes me to the emergency room where the hook me up with a IV, give me a few Ativan and literature on alcoholism and send me on my way.

0

Share this post


Link to post
Share on other sites

Please read this article and you will see that celiac crisis is different from what you describe. What you had was simply a gluten reaction. If you had been in true celiac crisis, which is very rare, they would crtainly never have turned you away from the ambulance, nor the hospital. You would have died.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660817/

0

Share this post


Link to post
Share on other sites

I'm sorry you felt so badly! :( Sounds like a bad cc situation, a hyperthyroid situation, or a really bad virus or reaction to something.

I hope you feel better.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,691
    • Total Posts
      914,447
  • Topics

  • Posts

    • Second Panel has come back...advice?
      Update!  I went to my follow up with my gastro. He's hesitant to diagnose celiac without an endo, but said he will redo the blood work after I'm several months gluten free. My DGP IGA should drop after being gluten free, right? This could confirm the suspicion? I know the TTG levels drop, but want to be sure the DGP also drops on the diet.  Thanks! I've already replaced all kitchen equipment and pantry/fridge items. Early on I didn't realize the potential for cross contamination in restaurants. Now I do, so eating out has been put on halt for a bit. 
    • does your diet have to be like a perfection?
      Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening.  As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise. You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way. Good luck.
    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,730
    • Most Online
      1,763

    Newest Member
    Fragranista
    Joined