Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Hoping for an end..

Soretummy
 Share

Recommended Posts

Soretummy Newbie
Soretummy
Posted

Hey everyone! 
 

I have been having a time.. woah. It’s been brutal. 
 

I got severe food poisoning  12 months ago and that’s the best way to describe the stomach twists and turns, cramps and excruciating pain that I often feel normally straight after or shortly within eating.. 

 

I have been in so much pain, always needing to be near a toilet as I have severe diareah and pain at mostly no notice. I went to my doctor and he’s said ‘sounds like IBS’ but I have had IBS for a long time, this is something different. 
 

He is starting to process of testing for Celiac disease now and upon researching it all, this sounds so spot on for me.. all the pain, reactions and even the lactose intolerant part.. 

It seems each day there is another food I can’t stomach. All diary is completely out, even too much almond or oat milk (I now realise that could be the gluten) cause this reaction also.. 

I am 2 years PO gastric sleeve, so my body snd digestion has changed A LOT in this time. 
 

any tips, tricks or advice/ insight from those who have gone through this journey would be so helpful.

 

im hopeful to get some answers and start to be able to live more carefree, not constantly thinking about the nearest bathroom. 
 

 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Oats do not contain gluten but have a protein called avenalin which some believe causes a similar reaction in the gut to gluten. About 10% of celiacs react to oats like they do gluten. However, it's not entirely clear whether this is because of cross contamination of the oats with gluten containing grains. There is not yet definitive research available to sort this out.

But please here this. Do not attempt to reduce your gluten consumption before you get all testing done for celiac disease. There are blood antibody tests (first stage of diagnosis) and this can be followed up by and endoscopy/biopsy which is the second stage of diagnosis and considered to be the gold standard. However, if the antibody values are high, many physicians forego the endoscopy/biopsy and diagnose on the antibody values alone. But you must still be on regular amounts of gluten daily before either test. Many physicians are ignorant of this or forget to explain this to their patients. Cutting down on gluten before the tests will allow the body to heal and recover and will invalidate either kind of test. So continue to eat one to two slices of wheat bread (or the equivalent) for at least two months before the blood antibody test and at least two weeks before the endoscopy/biopsy, should that be ordered.

Edited by trents
Soretummy Newbie
Soretummy
Posted
  • Author
4 minutes ago, trents said:

Oats do not contain gluten but have a protein called avenalin which some believe causes a similar reaction in the gut to gluten. About 10% of celiacs react to oats like they do gluten. However, it's not entirely clear whether this is because of cross contamination of the oats with gluten containing grains. There is not yet definitive research available to sort this out.

But please here this. Do not attempt to reduce your gluten consumption before you get all testing done for celiac disease. There are blood antibody tests (first stage of diagnosis) and this can be followed up by and endoscopy/biopsy which is the second stage of diagnosis and considered to be the gold standard. However, if the antibody values are high, many physicians forego the endoscopy/biopsy and diagnose on the antibody values alone. But you must still be on regular amounts of gluten daily before either test. Many physicians are ignorant of this or forget to explain this to their patients. Cutting down on gluten before the tests will allow the body to heal and recover and will invalidate either kind of test.

Thank you for all of that. 

As much as I want to, I understand the importance of having the gluten there to test effectively, so I won’t cut down until the testing is completed and I am given results. 

 

I appreciate your assistance!

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! This article might be helpful:

 

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
 Share
Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      If you mean continueing on Gluten Free my answer is yes. She showed significant improvement in her behavior and that translates to a happy family. Do get her tested as sooon as you can. You might want to investigate genetic testing for Celiac Disease. Children recover more quickly than adults. It took my son about 6 months on Nutramigen before going...
    2. Wheatwacked
      - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      Hi @Nicbent35, When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration. With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing. In the meantime, though, continue on GFD. Her health is more important than convincing...
    3. knitty kitty
      - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      3

      Anyone else with very high HDL?

      @plumbago, Are you taking any folate with your B12? Folate helps regulate HDL levels. You may try taking a methylfolate supplement with your B12. If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency...
    4. Nicbent35
      - Nicbent35 replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    5. trents
      - trents replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,889
    • Most Online (within 30 mins)
      7,748
    Missymid
    Newest Member
    Missymid
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      Anyone else with very high HDL?

      By knitty kitty · Posted

      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    • trents
      3 year old gluten intolerance?

      By trents · Posted

      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
×
×
  • Create New...