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

If it’s not gluten, what is it?


Rosecottage

Recommended Posts

Rosecottage Newbie

I was starting to feel pretty bad, and then I read that Earth’s Own chocolate oat milk is no longer certified gluten free. They buy the oats from someone who produces wheat on the same farm, but there’s no contact in the processing area. I had been drinking it for two years, so I decided it must be an aha! Moment and stopped drinking it.
 

But before I did that, I saw my doctor for a blood test. It came up negative for a celiac reaction. If I had been poisoning myself for 2 years there would have been something. The last time I had a reaction and tested positive like this, it was because I ate a salad that some couscous or bulgur fell into. It was just a couple of balls of it. That’s how sensitive I am. 

I  guess I haven’t been glutened so, I don’t know what’s wrong. My face is swollen. My eyes are goopy. My stomach is sore. My poop is floating. I have the usually telltale stitch in my side where a giant gas bubble always forms in the large bend of my intestine on the right (I’ve had a lot of x rays when I thought I was dying over the years 😅😂) I have that achy all over feeling. But I have no symptoms of a virus or anything. No runny nose, no sore throat, no fever. 
 

The only things that have changed are: 

I was diagnosed with uterine hyperplasia but only during my periods and the gyne prescribed movisse (progesterone) about 2 months ago. I had some stomach pain at first but then I got used to the pill. It keeps me from being in constant pain. 
 

I have low vitamin D (low normal is 75, mine is 25) and the doctor recommended I use a supplement, which I started yesterday. It’s Webber naturals 1000 IU, and the gelatin they use is gluten free. 
 

I went off the chocolate oat milk a week a go, which seemed to cause diarrhea so I went back on it a couple days ago since I wasn’t reacting to it, just trying to get things to form again. Adding a new food usually causes some discomfort. 
 

Right now every time I eat it feels like the food has turned to cement, my muscles and intestine are turning to stone, that’s the only way I can describe it. If I can’t get it under control I’ll end up in emergency, on an IV, completely quarantined by docs who are just waiting for me to live or die on my own (again) and I find that really annoying, so if anyone sees anything in my post that stands out or reminds you of a symptom you’ve had, any suggestions would be really helpful. 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



trents Grand Master

"The last time I had a reaction and tested positive like this, it was because I ate a salad that some couscous or bulgur fell into. It was just a couple of balls of it. That’s how sensitive I am."

One isolated episode of getting glutened would not produce positive celiac antibodies. It takes weeks of steady exposure to get antibodies up to levels where they are detected in blood tests. This must have been a tip of the iceberg experience.

Link to comment
Share on other sites
trents Grand Master

I wonder if you are cross reacting to the protein avenin in oats or casein in dairy.

Link to comment
Share on other sites
knitty kitty Grand Master

@Rosecottage, welcome to the forum!

I had extremely low Vitamin D, had developed uterine hyperplasia (endometriosis), was prescribed progesterone, had Gastroparesis (foods turn to cement and don't move), had so much trouble with gas I felt my intestines were making balloon animals, had goopy swollen eyes and face from histamine intolerance and Small Intestinal Bacterial Overgrowth, and aches and pains everywhere.  

Celiac Disease affects our ability to absorb all nutrients, vitamins and minerals.  It's rare to have a deficiency in just one vitamin.  It's important to correct deficiencies as quickly as possible to prevent permanent damage.

Vitamin D is one of the four fat soluble vitamins (A, D, E, and K).  At higher levels (80-110), Vitamin D works like a hormone, progesterone, and makes cells more sensitive to progesterone.  

I took high doses of Vitamin D 3 to correct my deficiency.  See the article below.  Your 1000 iu a day isn't sufficient to correct the deficiency.  

An open-label, randomized, 10 weeks prospective study on the efficacy of vitamin D (daily low dose and weekly high dose) in vitamin D deficient patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6618212/

 

I followed a low histamine Paleo diet (the Autoimmune Protocol Diet).  This Paleo diet starves off the SIBO bacteria and lowers histamine levels.  I felt better within a few days.  My intestines had time to rest and heal.  After three weeks, I started adding foods back into my diet.  

I took over-the-counter vitamins and minerals to correct my deficiencies and boost my absorption ability.  In addition to the four fat soluble vitamins, I took a B Complex that contains all eight essential B vitamins, Vitamin C and minerals like magnesium (needed to work with Thiamine).  

Studies are now showing that higher levels of the eight essential B vitamins have health benefits.

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

 

And...

B Vitamins: Functions and Uses in Medicine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/

 

I also took high dose Thiamine Vitamin B1.  The form of Thiamine called Benfotiamine has been shown to promote intestinal healing, improve Gastroparesis and gut motility, and influence bacterial growth in the intestines.  Thiamine and Benfotiamine have antibacterial properties against those pesky SIBO bacteria.  Thiamine and Benfotiamine also have pain relieving properties.  

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Diets high in carbohydrates and fats can lead to SIBO (in which bacteria ferment your intake, producing gas as a byproduct) and absorption of nutrients is further reduced.  SIBO can also lead to Leaky Gut Syndrome resulting in high histamine levels and inflammation.  Thiamine helps lower histamine levels.  

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Hope this helps!

Link to comment
Share on other sites
shawnthehaze Newbie

I have some issues myself that really came on after I took the Vaccine. I had to suddenly quit eating anything with Gluten and that pretty much is a life changer. But, I have this similar thing happen as you where I get trapped gas and my intestines feel harder and feces gets hard inside me and I haven't been able too find out why. Something triggers this to happen, but like you I haven't figured it out and doctors where I live are useless to give me any kind of answers. Good luck. I hope you figure it out and don't have to worry about this problem anymore, because believe me I have some of the same problems and it changes the quality of life. No doubt about it.

Link to comment
Share on other sites
knitty kitty Grand Master

Welcome to the forum @shawnthehaze!

Deficiency in Thiamine (and magnesium) results in constipation and Gastroparesis (the intestines don't squish food through well).  Intestinal bacteria have time to ferment those foods and gas results.  Try the Benfotiamine and magnesium and a B Complex. 

Remember gluten based foods contain added vitamins and minerals to replace the vitamins lost in processing.  Since you have stopped eating gluten products you are no longer consuming the vitamins and minerals added to gluten products.  Gluten free processed facsimile foods are NOT required to be enriched with added vitamins and minerals.  Time to buy your own vitamins and minerals. 

Thiamine and the other B vitamins are compounds our bodies cannot make and must get from food or supplementation.   Without these B vitamins, we cannot make life sustaining enzymes.  Our bodies cannot store the B Complex vitamins for long so we must get them from our food every day.  

Doctors are not as knowledgeable about nutrition as we would like.  Out of seven years in medical school, doctors receive twenty hours of nutritional education, and taught nutritional deficiencies don't happen in well fed societies.  They rarely recognize deficiency symptoms.  They are taught to prescribe pharmaceuticals.  

The B vitamins are safe and nontoxic even at higher doses. If not needed, they are readily excreted in urine.  The World Health Organization says that the best test for vitamin deficiencies is to take them and look for improvement.  

Hope this helps!

Edited by knitty kitty
Typo correction
Link to comment
Share on other sites
Scott Adams Grand Master

Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure.

You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute.

If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here:

https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/ 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,810
    • Most Online (within 30 mins)
      7,748

    Niki111084
    Newest Member
    Niki111084
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      It will not undo all of the healing.  If it did, diagnosis of celiac disease would be much easier!  To have enough damage to see on an endoscopy requires several weeks of gluten ingestion. 
    • Jean Shifrin
      HI, I am new to this and am still in 'repair' mode, which I know will take time. But I'm wondering if anyone knows what happens if you ingest gluten after you have made a lot of progress in repairing your villi. Does anyone know if you just have a short-term issue? Or does an accidental ingestion of gluten derail all the work you've done and set you back to square one? Thanks.
    • Scott Adams
      Hydrolyzed wheat is wheat protein that has been broken down into smaller components through a chemical or enzymatic process called hydrolysis. This ingredient can be found in various products, including cosmetics, personal care items, and some food products. For people with celiac disease, hydrolyzed wheat is generally not safe to consume because it still contains gluten proteins, even in its broken-down form. Though hydrolysis reduces the size of these proteins, it doesn’t fully remove the components that trigger an autoimmune response in people with celiac disease. In food products, hydrolyzed wheat protein still poses a risk and should be avoided. With regard to the McDonald's French fries, the total amount of hydrolyzed wheat in the flavoring is small, and the amount that ends up in an order of fries is even smaller, and likely below 20ppm. McDonald’s states that the fries are gluten-free by ingredient and free from cross-contact with gluten-containing foods in their dedicated fryers. Third-party tests and statements by McDonald's confirm gluten levels are below the FDA threshold for gluten-free labeling (20 parts per million or less). So, while McDonald’s USA fries may be gluten-free based on testing, some people with celiac disease still approach them cautiously due to the past concerns and individual sensitivities.
    • trents
      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
    • Scott Adams
      There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.
×
×
  • Create New...