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

Recent Diagnosis/Side Effects


EmilyAnne89

Recommended Posts

EmilyAnne89 Newbie

I was recently diagnosed with Celiacs, which originally surprised me because I haven't always had reactions to gluten. Granted I've ALWAYS had tummy issues, I assumed it was IBS/Acid Reflux/Etc. But in the past, I would eat all kinds of things with gluten, sometimes feeling sick afterward, sometimes just okay.

Since my doctor informed me that I had Celiacs, it started to make sense to me the more I researched it. I stopped eating gluten almost immediately. I noticed after the first week so many things were better, things I didn't even realize were as bad as they had gotten. My mood was lighter, my energy levels higher, my joints felt better, my stomach wasn't constantly giving me troubles and having me run to the restroom, etc. Of course, I had a few days I needed to take Immodium AD (my doctor says part of that is due to my Type A Personality)....

However, I was out of town and due to limited options and resources I ordered a gluten-free pizza because I was REALLY craving it. After the 3rd slice (they were small slices) my stomach started hurting. I didn't think much of it because I was starving and I have conditioned myself to ignore those aches because they have been so constant in the past. Long story short, I fell asleep and woke up 2 hours later sweating with terrible pains. I ran to the bathroom and had several intense bouts of diarrhea. I felt straight up SICK. I immediately took some Immodium hoping to just get back to sleep since I had work in the AM. The diarrhea subsided after about 2 bouts of it. Regardless, the entire next day I just did not feel good, I was tired, out of it, unfocused, unmotivated. ICKY is the best word I can think of. 

Long story short, is this normal? Is this how my body is going to react now that I've eliminated it? Or is it something more than just Celiacs? I feel pretty confident that everything I consumed was within my regular realm of consumption since this gluten-free diet, however, cross-contamination could be possible. I'm concerned I have more going on because these side effects (when had), have become more intense. Does Celiacs get worse as time goes on? I've been going 28 years eating gluten and this is the first I'm hearing of this allergy. I'm just confused. Concerned. Frustrated. EXHAUSTED.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Celiac disease is like a chameleon.  Symptoms vary from person to person.  They can change after each gluten exposure.  I was just anemic when I was diagnosed.   I was shocked!  But now after being gluten free. I can get all the classic GI symptoms.  it can drive me crazy trying to guess if my symptoms are celiac-related or not.  

There is a steep learning curve to the diet.  Besides eliminating gluten, you might need to determine any food intolerances due to your damaged gut.  It you will need time and patience.  You can heal.  It just will not happen overnight.  So...I would strongly recommend not eating out and avoiding processed foods as much as possible to aid in healing.  Some folks do well on gluten-free junk food and others do not.  Give yourself a chance to heal and then experiment.  

celiac disease  is NOT an allergy!  It is an autoimmune disorder like MS, RA or Lupus except the trigger is known -- gluten (how lucky is that?).  A flare up (from even a tiny amount) can last for days, weeks, or months.  Every celiac is different in terms of symptoms, recovery and other complications (like I have osteoporosis.....).  

The good news is that you can feel better.   Just keep moving forward!  

TexasJen Collaborator

It sounds like you ordered your pizza from a restaurant.  There is a very good chance the pizza you ate had gluten in it - cross contamination. Maybe from a shared kitchen, the utensils etc.  It is almost impossible as a celiac to eat food made in a kitchen that cooks with flour. That pretty much eliminates pizza places, bakeries etc.  

There is a steep learning curve with celiac and most people continue to make mistakes for the first 6 months. And, even then, we all get glutened here and there - even the most careful of us. Keep on learning more about what foods are safe and where cross contamination is likely (restaurants, buffets, friends houses, parties, pot lucks, etc).  

Good luck!

 

Victoria1234 Experienced

Many of us have a worse reaction to gluten once we have started healing than before we went gluten-free. Sometimes the reactions last a few hours, sometimes much longer. And the reactions can change from time to time as well. It's pretty crazy. So you probably need to stay away from restaurants as much as possible at this juncture. If you go out of town a lot, pack food with you that you can eat/cook while in the hotel environment.

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. - JoJo0611 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Just diagnosed today

    2. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Samanthaeileen1 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,800
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
    • RMJ
      The normal ranges can vary for the tissue transglutaminase and gliadin antibody celiac tests because the units aren’t absolute.  Could you please tell us what the normal ranges are for the laboratory used? If her tissue transglutaminase results are 10-fold above the normal range some would diagnose her on that alone.  Endomysial antibody ranges are more standardized, and a titer of 1:5 would usually be normal.  Might that be the normal range and not her result?  Her total immunoglobulin A is normal for her age. (This is tested because if low, then the other IgA tests might not be valid).
    • Samanthaeileen1
      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
    • olivia11
      This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense.   You are not confusing yourself  you have got it right. Thiamax (TTFD) plus a B-complex, and if you want benfotiamine, the Life Extension formula covers that at ~100 mg.
    • olivia11
      High fiber can definitely cause sudden GI distress especially if it’s a new addition but accidental gluten exposure can feel similar. Keeping a simple food/symptom log and introducing new gluten-free foods one at a time can really help you spot the pattern. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense.
×
×
  • 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.