Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Where To Begin

jklivin

Recommended Posts

jklivin Newbie
jklivin
Posted

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

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

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. :)

Link to comment
Share on other sites
jklivin Newbie
jklivin
  • Author
Posted

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.

Link to comment
Share on other sites
bartfull Rising Star
bartfull
Posted

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.

Open Original Shared Link

Link to comment
Share on other sites
nvsmom Community Regular
nvsmom
Posted

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.

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Bad Reaction To Regular Ruffles Cheddar and Sour Cream

      By Tanner L · Posted

      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
    • ekelsay
      50 YO Male Recently Diagnosed with Celiac Disease

      By ekelsay · Posted

      Today, I received the results of my Tissue Transglutaminase (tTG) Ab, IgA test. I am not sure how to interpret the results. I have left a message for the doctor that requested the test but have not heard back. The results stated that the normal range is from 0.00 - 4.99 FLU. My results came back at 92.08. Is this concerning? This seems extremely high for someone who has reached the age of 50 before finding out he has celiac disease.  The reason that I was administered the test in the first place is due to bloating issues that started about a year ago. I met with a Gastroenterologist and after a short question and answer session she wanted to test me for celiac disease and a bacteria test via the H. Pylori Breath Test. She seemed more concerned with the fact that I am a healthy male suffering from Anemia. Is it possible the anemia could be a result of celiac disease? I have been on an iron supplement for the better part of 5 years.      
×
×
  • Create New...