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

Help


lovetofysh

Recommended Posts

lovetofysh Newbie

Hi. I have been reading thru the postings and have discovered that I am actually not alone in this battle. I recently suffered pancreatitis and have been sick for months. I've gone through a number of tests including countless blood tests, endoscopy, biopsys, etc. Just last week, I was diagnosed with having Celiac Sprue, severe malabsorption, etc. I was told to completely cut out all gluten & wheat products. I have been doing as much research as possible to learn what it is I can and cannot eat. As of Saturday, I have been, I believe, completely gluten & wheat free. Saturday, Sunday and some of Monday I felt pretty good (although had a few dizzy spells) and figured I could go back to work. Tuesday morning has been a COMPLETELY different story. I woke up nausated and feeling awful. I figured I'd take a nausa pill, feel better eventually and go to work. As the day has gone on though I've noticed that I started getting the shakes, am incredibly anxious and irritated, cant think straight and have been forgetting everything, cry at the drop of a hat (I think out of frustration), am achy and my stomach is bloated and sensitive. I don't feel like a "stable" human being. Is this all part of the withdrawal? How long does it last? Is there anything that a person can do to relieve any (preferably all) of the symptoms????? I dont want to live the rest of my life this way. I have two beautiful very young children and I want them to know that they have a mommy who's fun, loving, etc... not always sick, tired and eats "funny gross stuff" as my daughter put it. I've also havent been to work in over a month and am afraid that if I stay out more I will lose my job (and if I go, lose my mind or relapse health wise). ANY advice, support, motivation or just plain venting so I know I am not alone from anyone would be SO GREATLY appreciated.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Love to fysh,

I am about to head to bed, but I had to write to welcome you to the board and offer you words of encouragement. You will get through this---and this board is the best avenue to doing that! I didn't find it right away and wish I had...it would have saved me so much time, effort, and mistakes. The people on this board live with Celiac---we get it....and we were ALL once where you are.

Just a quick note: Celiac damage takes longer than a couple days to heal. It can take weeks or months. So even if you are eating gluten free, you might feel like your health is on a roller coaster. We all wish that we would magically feel better overnight. Unfortunately, it takes time for you body to heal, and then begin to restore itself to normal levels.

Here's the good news!!!!!!!!!!!!!

Once gluten is completely out of your diet, and you heal....your body is generally a normal body, as long as you aren't consuming gluten. Add gluten back in...and you have "turned" your system back on (gluten sets your switch off....so keep gluten out, and the switch is off). So, yes, the life that you dream of....having a normal life....is most certainly possible. And most certainly will happen.

I'll write more tomorrow with some suggestions about food, and I'm sure others will chime in. There are plenty of normal foods that are gluten free. We have people over and unless they knew (which, lets admit, they all know) it was "different," they wouldn't be able to tell. I buy very few "specialty" gluten free products...the rest are naturally gluten free.

We'll get you there---don't worry. Let us know what we can do to help!

Laura

Ursa Major Collaborator

Hi, and welcome to these boards.

Yes, it certainly sounds like withdrawal symptoms to me. They should pass within two weeks or so, and hopefully you'll feel much better after that.

Hang in there, it is bound to get better soon!

Tritty Rookie

I know exactly what you mean! I was feeling so much better, the D had stopped and I felt like I was on the right path and wham! It was like detox (I guess...:))

I was lucky - it only lasted about 2 days for me - then it progressively got better. So hopefully you'll be on the mend here soon :)

A note about the kids - my 3 year doesn't understand why I can't share his goldfish anymore. So now we share fruit snacks instead - just as Yummy and a special treat to him...He keeps asking when my belly is going to heal - how hard is that to explain! But already he's noticed a change in my energy level and the amount of fun we have - so he is starting to be less concerned with me and my belly. So it will look up - I promise - and I've only been at this not quite 5 weeks!

JohnnieHamill Newbie

I figured I'd take a nausa pill, feel better eventually and go to work.

First of all -- you're not alone! That's the best and greatest news! Second, you will go through withdrawal, but there is light at the end of the tunnel...For some people short, for some people long.

I was reading your post and saw the nausea pill...before taking any medication, check to see if it has gluten in it. If it doesn't say anything, don't assume that it doesn't. Call the manufacturer (or check this board, but I would always suggest calling the manufacturer as the ingredients change.) This goes for food items also. What you can read one time says no wheat (gluten), and the next time you will see gluten. This happened for one of my favorite snack foods, Buggles.

Anyway, take nothing for granted. I have been gluten-free since 1993 but have recently been having DH outbreaks (because I cheated in October). I'm realizing that my conditioner has gluten in in, my hand lotion has gluten in it, and other things have gluten in it too.

Needless to say, check the label.

Oh, and finally, I never thought about tortilla chips or french fries having gluten in them from a restaurant...but most of them do because they dont place them in dedicated fryers (they combine all the fried foods usually together in one fryer).

Sorry for the long post, but, I'm still learning thanks to this board!

Peace,

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,075
    • Most Online (within 30 mins)
      7,748

    MamaJessica
    Newest Member
    MamaJessica
    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

    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
×
×
  • 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.