Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
ShannonA

No More Grains Either

Rate this topic

Recommended Posts

So I have now been off of gluten for 10 months and 8 months ago I had to get off of corn,soy, dairy.  That said my diet has been pretty much chicken, vegetables, and 2 fruits (apple and banana).  I also became salicylate sensitive which made eating anything else impossible.  As of last week I am not tolerating grains.  My belly started getting distended in October with certain foods but now it's distended with anything I eat.  I still have daily headaches/migraines.  I am on pain meds around the clock, anti inflammatory injections and muscle injections at night due to the horrific pain in my head.  I now notice if I eat grains my muscles and bones hurt to the point I don't want to get out of bed and the fatigue is atrocious.  Also grains have started making my mind feel crazy.  It sounds so weird but it's the truth.  It's hard to explain but  there is a direct relation with my intestine, grains, and my mind.  My pain management doctor does not believe this is the cause of any of my problems.  Although out of the 25 or so symptoms I had before going gluten free have resolved, I still have a few, all neurological.  WHen I go to the ER, Tordol shot is what takes away the pain, it's an anti inflammatory medicine.  My doctor started me on Cymbalta this week and I felt like I was on serious drugs and could not function.  I literally could not drive on the 4th day.  Will this end?  Why does it seem I am not going up hill?  I have only drank water and coffee for 10 months also. My biopsy showed nothing and blood test negative for Celiac disease although he only took 2 samples.  But it wasn't until I got off of gluten that I started to get better, bed ridden for 1 year and near death, really.  So why the grains all of a sudden? I just don't understand.  Thank you for any input!

 

 

Share this post


Link to post
Share on other sites

Drop coffee if you haven't so far. It can irritate a healing gut.

Thanks did not know that.  With insomnia the last 6 months, I've been drinking about 3 pots to help me going through the day.

Share this post


Link to post
Share on other sites

When you start reacting to more and more foods it is often a sign of leaky gut syndrome.  This means that the membrane that lets digested food into the blood stream is not working properly and is letting partially digested food through.  Your autoimmune system reacts to this partially digested food as being "non-self" and creates antibodies toward it, and there is another food you are reacting to.  This is usually not a permanent loss, but healing the gut is key.  I don't know what supplements you are taking, but if you are not already doing so I wold recommend a regime of probiotics, digestive enzymes and L-glutamine (to restore the good flora in your gut, supplement the enzymes your pancreas is producing to improve your digestion, and heal the gut). 

Share this post


Link to post
Share on other sites

Drop coffee if you haven't so far. It can irritate a healing gut.

Is tea OK?

Share this post


Link to post
Share on other sites

When you start reacting to more and more foods it is often a sign of leaky gut syndrome.  This means that the membrane that lets digested food into the blood stream is not working properly and is letting partially digested food through.  Your autoimmune system reacts to this partially digested food as being "non-self"  and creates antibodies toward it, and there is another food you are reacting to.  This is usually not a permanent loss, but healing the gut is key.  I don't know what supplements you are taking, but if you are not already doing so I wold recommend a regime of probiotics, digestive enzymes and L-glutamine (to restore the good flora in your gut, supplement the enzymes your pancreas is producing to improve your digestion, and heal the gut). 

Yes the Naturopath that I saw did say I had leaky gut back in June.  I just started being able to tolerate probiotics 4 weeks ago.  I have been on Verdezyme for a couple of months and I used to take L-glutamine per Naturopath but I quit a while back because he said it was healed by now.  I'll start it again. Thank You!

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
0

  • 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 
       
  • Member Statistics

    • Total Members
      86,544
    • Most Online
      4,125

    Newest Member
    AlyssaAnn22
    Joined
  • Forum Statistics

    • Total Topics
      111,814
    • Total Posts
      955,905
  • Who's Online (See full list)

  • Forum Discussions

    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
    It sounds like you were not given the full celiac panel. The full celiac panel includes: TTG IGA
    TTG IGG
    DGP IGA
    DGP IGG
    EMA
    IGA You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.    
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×