Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
1 1
CEMO

Anyone have similar symptoms?

Rate this topic

Recommended Posts

So, for most of my childhood I didn't get sick often and would rarely throw up (only if I had food poisoning), but during the summer before freshman year of high school I began throwing up violently. I didn't have food poisoning and I wasn't sick--it came completely out of the blue--but since it was the first time it happened I just let it slide. 

As I went into high school I would wake up nauseous every day for no reason either. It always happened early in the morning, often times waking me up before my alarm even went off. I went to the doctor and they prescribed me anti-nausea medication and it worked, but they never diagnosed the issue. 

Anyway, after that a cycle of nausea has been effecting me for about five years. The pattern is that I'll be fine most of the time, but about once a month (especially if I've been eating a lot of refined carbs like bread and pasta), I'll get violently sick with diarrhea and vomiting. It always happens in the middle of the night, around 3 - 5 AM. There were periods when it stopped happening (when I went on a low carb diet, which is why I initially thought it was connected to my carbohydrate intake), but it would always come back. 

Then before going into university the morning nausea came back, this time with no vomiting. I would wake up in the middle of the night at around 3 - 5 AM, and would feel on the brink of throwing up, especially if I lied down. So I went to the doctors and they suggested I might have celiac disease (my grandmother has celiac disease and so does my cousin so I am genetically susceptible). I got the blood work the same day and after that immediately started on a gluten free diet because I wanted the nausea to stop. Well, it did. Although the first week was torture, my body slowly got used to it. I stopped experiencing bloating (I never even noticed I had the issue until it was gone). I also used to have a really hard time maintaining my weight, but now I'm the lightest I've ever been and I don't even try for it. Most importantly, I haven't had the usual periodic nausea and vomiting in over three months. 

But the blood results came back negative for celiac disease. My doctor suggested I had IBS and shooed me out of her office, and I just continued being gluten free. I've been eating lots of vegetables, lots of rice, and not a lot of processed gluten free foods (too expensive). However, I haven't tried reintroducing gluten into my diet to see if the symptoms come back (with school going on I don't want to risk it).

My question is whether you've ever heard of similar symptoms? Keep in mind that I felt fine for long periods of time (if you discount occasional bloating). It almost felt like something was building up in my system and my body purged itself once the levels got to high, and I always felt the culprit was high carb intake. Now, however, I eat tons of rice and even more sugar than I used to, and I feel fine with those.  Is it gluten? Can gluten build up in your body? thank you in advance :)

Share this post


Link to post
Share on other sites

Welcome!

Symptoms vary with those with celiac disease.  It is why a diagnosis is often so hard to get.  You said that you tested negative on celiac testing.  I would confirm whether or not you had a complete celiac panel or just a screening test: TTG.  Here is the full panel:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replaced by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)
 
Why do I ask about the full panel?  The screening TTG does not catch all celiacs.  With a Grandmother who has celiac disease, you should get a full panel.  

 

Gluten does not stay in the system.  It passes like any other food.  For celiacs (autoimmune disorder that attacks the lining of the small intestine), eating gluten can trigger an autoimmune flare-up that can last for days, weeks and months!!!

 
  • Upvote 1

Share this post


Link to post
Share on other sites
10 hours ago, cyclinglady said:

Welcome!

Symptoms vary with those with celiac disease.  It is why a diagnosis is often so hard to get.  You said that you tested negative on celiac testing.  I would confirm whether or not you had a complete celiac panel or just a screening test: TTG.  

 

Thanks! I'm pretty sure I only got a screening because I just got blood work and that's it. My doctor said she was positive I didn't have celiac disease from the results, but I'll go back and make sure. 

Share this post


Link to post
Share on other sites
1 hour ago, CEMO said:

Thanks! I'm pretty sure I only got a screening because I just got blood work and that's it. My doctor said she was positive I didn't have celiac disease from the results, but I'll go back and make sure. 

The celiac panel (blood test) is comprised of several tests.  You may have just had the TTG IgA and the IgA control test.  

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
1 1

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×