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
      102,674
    • Total Posts
      914,381
  • Topics

  • Posts

    • Itchy skin
      Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it.  Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
    • Where do I start??
      I will be going for my endoscopy on Februry 19. The other day in reading about Celiacs, I read about the strange rashes often associated with celieacs and gluten intolerrance. About six months ago, a rash exactly as you describe showed up on the backs of my knees. The doctor didn't know what it was, hought maybe it was ringworm, and gave me some topical medicine, and the spots did go away with time. However, I've had the same type of spots show up in other places occassionally. I know for a fact they were not ringworm.
    • Advice on reintroducing dairy.
      I can!   Start with hard cheeses, then yogurt/butter, soft cheeses and finally milk/cream.  Start slowly and build.  Give yourself time to get your body to release the enzymes necessary to digest lactose.  Certified gluten-free enzymes for lactose can help the transition.  Lactose free milk and ice cream are helpful too.  Remember, that genetically some of us are predisposed to being lactose intolerant no matter what (e.g. aging, race).   I wish you success!      
    • Gluten free diet, positive celiac screen...what should I eat now?
      Here is a link that explains why you should get tested (completely) for celiac disease: https://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/ As far as the link to the functional doctor....why?  If you get a celiac diagnosis, chances are you will heal on a gluten free diet.  As you have probably seen on this forum, most of us encourage newly diagnosed members to eat a whole-foods, easy-to-digest (a.k.a "cooked to death")  gluten-free diet to speed healing.  Going Paleo might not be the best right now, if you have celiac disease.  Eating lots of nuts, raw fruits and veggies can be tough on a damaged gut.  You can try that diet later!   Everyone is different due to various degrees of damage, so some may have temporary intolerances  (e.g. lactose).  You just have to experiment.   Save your money and spend it on good wholesome food.  I heartily support getting away from the SAD (Standard American Diet).   Celiac disease is the one autoimmune disorder that is healed by avoiding a food -- gluten!  
    • Itchy skin
      I have DH and itchy skin is a symptom.     Your Dermatologist could write a script for Dapsone, provided you're not allergic to Sulphur.     Expect blood labs to go with using Dapsone.      You need to study everything that goes in your mouth for possible gluten content, including all meds.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,700
    • Most Online
      1,763

    Newest Member
    Valou
    Joined