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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.