If it’s not gluten, what is it?

[Rosecottage]

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. 

[trents]

"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.

[trents]

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

[knitty kitty]

@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!

[shawnthehaze]

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.

[knitty kitty]

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 April 7, 2024 by knitty kitty
Typo correction

[Scott Adams]

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/